More Than Just Numbers

Did I mention that I have a tremor in my hands now? I noticed it Friday night--it appears to be an intentional tremor, meaning that it happens when I go to do something. Um, wait, I do have a resting tremor, too. The intentional tremor is worse. Finely controlled movements with my fingers are difficult: when I try to adduct/abduct my pinky slowly, it trembles and jerks through the range of motion. Hopefully this is caused by the steroids and not evidence of worsening MS.

I wrote an email to my best friend, so I'll just post it here with slight modifications. Why reinvent the wheel?

By body is having kind of a rough time with the steroids. Turns out I'm on a high dose. The bishop's wife is a nurse, and she's gone on some doctor visits with me and checks with me to see how I'm doing. She asked what the dosage is... 60? 100?. Um, 1,000. Not once but five times. The bitter taste it causes sucks. It sticks around for like 10 hours and makes food taste spoiled. The steroids give me a headache sometimes and make me feel like I have the flu. Tired but can't sleep at night very well. That might just be the MS or stress, though. My ears hurt. Basically, I just feel like a pretty sick girl.

I got my period at about 4:00 am. File that under "figures."

Last night, my left eye started hurting. Kind of sharp. Not severe, but enough to keep me awake. Just hoping the steroids do their thing before I lose sight in that eye. It's the one with optic neuritis. Honestly, both of my eyes aren't great right now. I had difficulty reading music to play the piano today. I was trying to learn a piece of music for choir. It was hard to see which line the notes were on. That, along with the eye pain, made me scared to lose my vision, but then I was disappointed in myself for being afraid. I want to have faith.

I don't want to give the impression that things are only hard. I'm now a pro at the saline, medication, saline, heparin routine for doing my IV treatments. It's easy.

I have had a good weekend despite any troubles. And I'm hopeful that the steroids will work. I researched drug treatments and know what I definitely don't want and what I would be willing to try. I'm beginning an inflammation reducing diet and some other "alternative" medicine strategies. It's just hard to remain hopeful when new symptoms show up, like the eye stuff. 

Just as I was about to send this, I got a call from your brother Phil (her brother is a radiologist doing a fellowship in neuroradiology). He said phrases like this: periventricular white matter lesion near the right frontal horn--conspicuous absence near left frontal horn--asymmetricality. Lesions in subcortical white matter, periventricular area--distribution across space. Distribution across time not yet established--one MRI. Nothing enhancing with contrast.

So those are my Phil notes, and I am to question a neurologist who does not notice these details on his own. Those were things that Phil noted that were missed by the other radiologist. He did not note lesions on my spine, and neither had the other radiologist.

Phil's opinion is that the amount of scarring on my brain, while not excessive, is not normal in a person my age who is otherwise healthy. You might see it in the average 50-60 year old. You might see it in someone my age with severe kidney or vascular disease. That doesn't pertain to me. So it should be a red flag that something is wrong. Does it scream MS? No. It does call out MS, though, because although small, the lesions are in classic MS areas. And they are in different parts of my brain, which is part of the diagnostic criteria for MS. I don't have the other part of the diagnostic criteria, which is evidence of the lesions persisting or increasing over time. I've only had the one significant attack and the one MRI. The enhancing with contrast note is that the lesions didn't appear to be active at the time of the MRI. (This lends credence to what I've been reading about the role of Vitamin D--you have damage occurring but probably don't have an attack until your Vitamin D level drops. And "drop" for a person with MS appears to be within normal limits or slightly low compared with other people. My Vitamin D level needs to be double what others' need.)

So... Taking into account the images, my description of symptoms, and the finding of optic neuritis, MS is the most likely problem. Apparently optic neuritis is a key finding in the diagnosis. I guess that's why even Dr. Gabby didn't deny me treatment after that.

Phil is in favor of doctor shopping until I find someone who respects my autonomy and considers me a partner in determining treatment. He said that without knowing the fullness of the medical nuttiness I've encountered.

And he wanted to make sure I won't be on the steroids long term.

He wants to be apprised of my visit to the MS Center (he was polite enough to add only if I don't mind sharing or have enough energy). He feels that they will certainly have up-to-date opinions based on research and hopes that they will be willing to partner with me in determining a treatment plan. He advised me to send the MRI films, not just the reports that they requested. And he offered to listen and give advice any time I am unsure that my doctors are providing appropriate care.

I appreciate Phil's opinions, and I appreciate you suggesting that I contact him. I feel calmer since speaking with him (could be the totally unemotional manner with which he presented his findings ;). I think that although of course I don't want MS, I do want to be confident in the diagnosis. The diagnosis leads to the treatment, which is what I'm really interested in. My question is, "Now what the crap do I do?" Because of Dr. Gabby's vacillation and the total disagreement between neurologists, a tiny part of me still questioned the diagnosis. The way that Phil explained it made sense. Instead of just giving me an opinion, he told me how that opinion had been reached. He's nothing if not logical and thorough. :)

So that's what's up.

Numbers

So I've now had three Solu-Medrol treatments. Two more to go. I think maybe they're helping, but it's hard to say. The most noticeable side effect has been a horrible, bitter taste that begins about half an hour into the treatment and continues for about 10 hours. Eating is rather unappealing--milk tastes spoiled, sweet things taste bitter. Even water tastes awful. I can eat salty foods, but I'm not really hungry for the rest of the day after a treatment. I seem to be in the mood for cereal afterward, but I can't eat it with the milk tasting rotten.

Another side effect has been feeling sort of like a have the flu. Achy, headachy, tired during the day but not sleeping well at night. Well, I did sleep fine Friday night but not last night. I had other things going on last night, too. I'm going to write a separate blog post about this stuff. I emailed my best friend about it, so I can just modify the email I sent her and post it here.

Let's do today's numbers. Keep in mind that I do not know how much is the Solu-Medrol and how much is the MS.

Sensory:

-Pins and needles: 2

-Tingles: 1

-Paresthesias: 1

-Numbness: 2

-Vision: 3--I had difficulty reading music today, and things have been blurrier than normal. Tiredness? The music things was weird and new. It was hard to tell which line the notes were on. 

Motor:

-Gait: 1--went to church today

-Sore muscles: 3, and I am taking ibuprofen for my period back pain

-Fine motor: 3

-Weak muscles: 4

Cognitive:

-Language processing: 3

-Memory: 2

-Attention: 1

-Confusion: 2

General:

-Fatigue: 7 this morning but I was up at 3:00 am--only got 5 hours of sleep. I took a nap in the afternoon, and my fatigue has been more like a 3 or 4

-Balance: 3--really bad when I don't have total light, like trying to walk in the middle of the night with only the light from the clock or nightlight

-Sleep: 7

-Bladder: 4--difficult to get anything out. I know I'm not eliminating as much as I'm taking in, and my urethra seems to be irritated. Hope I'm not getting a UTI.

-Anxiety: 1

Stronger

Yesterday I got a call from an infusion company. They were set to deliver Solu-Medrol, a steroid, to my house so that I could receive is through an IV.

In my house?? Wow, better than going to a clinic.

So I got the goods last night, and a nurse came today to put in the IV and show me how to give myself the medicine. It's kind of complicated, but not bad. Probably just seems complicated because I'm exhausted (that would be the four hours of sleep I'm running on).

The nurse had to stay for the whole infusion, which took 2.5 hours. We had a fantastic conversation about supplements, nutrition, enzymes, chemicals, etc. She validated that I am doing the right thing by researching vitamins. She told me about a website where they report clinical studies of various vitamins, supplements, and drugs. You can search by disorder. I want to look at that!

That nurse was exactly what I needed today. She encouraged me to take ownership of my health, to resist becoming victimized by the healthcare system. That I'm on the right track. I feel much stronger since talking with her.

Emotionally. Phyiscally... Well, I'm sleep deprived. Oh boy. I'm so tired now. I didn't want to nap, but I think I will have to. Maybe a short one.

First, today's numbers:


Sensory:

-Pins and needles: 3

-Tingles: 2

-Paresthesias: 1

-Numbness: 2

-Vision: 1--OH, that reminds me. Last night when I wasn't sleeping (ha), I spent some times watching amazing light shows in my eyes. It didn't matter if my eyelids were closed or open, I had the light shows. Not all the time. After I had been up? After I had been exposed to light? (Like when I got up and blogged.) Maybe this is normal and I never noticed it before. It was like circles and rings.

Motor:

-Gait: 1--except that I haven't done anything

-Sore muscles: 3

-Fine motor: 3

-Weak muscles: 4

Cognitive:

-Language processing: 2

-Memory: 2

-Attention: 2

-Confusion: 2

General:

-Fatigue: 7

-Balance: 2

-Sleep: 8

-Bladder: 2

-Anxiety: 5 this morning in anticipation of the infusion, after that 2

I'm hopeful that the Solu-Medrol will help me feel better.

Rough Yesterday Bleeds into Today

Yesterday was bad, emotionally. I talked to four friends at different times during the day, working through my fears and hurt. That helped. I took Nuvigil for the first time, and it was okay. It made me a little shaky, but I was able to get through the day without a nap, so I didn't mind the shakiness. When it wore off, I was ready to crash. I thought I would fall asleep easily, and I was certainly exhausted...

But I laid in bed for hours. My body was dead tired, but I couldn't turn my mind off. Not racing thoughts. Occasionally an anxious thought, but mostly just regular thoughts. I forgot that I was supposed to be sleeping. I would go half an hour without trying to fall asleep.

And I began noticing a symptom that had happened once or twice before. Darn it, I thought I was getting better! I am. I guess it's a slow process. Up and down. Lack of sleep probably has made it worse the past couple of days. Just googled... Oh my goodness, even one night of four hours' sleep increases inflammation. That's the last thing you want with MS, and I've had several nights where I have slept poorly.

OK, so the "new" symptom was pins and needles in the right side of my tongue and lower lip. Seriously, just the right side. Weird! And it's like partially numb. It feels like I had dental work several hours ago and the numbing is wearing off. Kind of burny. And today I'm having taste disturbance--things taste bitter. But it might be because I chewed on an Immodium tablet (diarrhea, joy). They're kind of bitter. But I've chewed on them tons of times and never had that taste stick around. I took it five hours ago and have eaten since then. Wasn't able to enjoy it with the bitterness, but I did eat. Um, maybe I should brush my tongue or something.

Alright, so after I blogged at 1:30 about my frustration with insomnia (which is not something I've struggled with before), I went back to bed and tried to sleep. I ended up crying. Praying and crying. Begging for sleep. I have two Ambien pills, but I knew I couldn't take one at that time. You need to be able to sleep 8 hours after taking it, which I couldn't have done. So I decided to take a Bendryl.

Wow! Big mistake! I took it at 2:00 and began to feel much "heavier" (limbs) by 2:45, but I didn't fall asleep then. Maybe half an hour later I did. But I woke up around 3:45/4:00 because my leg was twitching! Like jumping. Weird and so uncomfortable. I've taken Benadryl before and never had that. It continued for half an hour. Stuck awake. After that feeling subsided (whew), I fell asleep. I think I woke up and went back to sleep twice. Got up at 7:30. So I got less than four hours of sleep. I can't believe I am awake right now. But I did NOT want to take a nap, because I'm hoping I can sleep tonight. On the other hand, maybe you can get "overtired" and that makes it worse? I know that people with MS need a lot of sleep. I don't know how to manage that.

I don't want to do the numbers for yesterday, but I know that I was tired (would have been worse had I not taken Nuvigil), weak, and had some pins and needles in my right foot.

Oh brother. I was just noticing the bitter taste getting worse, and I wondered if it was the Solu-Medrol (please see my soon-to-be-written next blog post). Google! Yup, other people have had a bitter taste. Darn! I hope it goes away soon.

Insomnia

I'm exhausted but can't sleep. Not because of anxiety. I just start thinking about things and forget that I want to sleep. How can I forget that when I'm this tired? My body is aching for sleep.

Bad Day Becomes Good

This morning I was too tired to function and had to take a nap. Then I became human. So I'm not going to include the morning in my numbers, just how I felt during the afternoon and evening. I think I was so tired because I didn't sleep well... which I mentioned before.

Sensory:

-Pins and needles: 1

-Tingles: 3--I'm renaming this tingles, which is what I originally called the feeling. That radiology guy called it hypersensitivity. Going back to my word.

-Paresthesias: 1

-Numbness: 1

-Vision: 2--I haven't had anything this afternoon, but I'm including this since I did have floaters this morning for the first two hours after I got up.

Motor:

-Gait: 1--sooo much better!

-Sore muscles: 3 :)

-Fine motor: 3--had to interpret sign language tonight and struggled, but I'm not sure if it was my brain or my hands. Actually, maybe it was my brain.

-Weak muscles: 3

Cognitive:

-Language processing: 2

-Memory: 1

-Attention: 3

-Confusion: 1

General:

-Fatigue: 4 (but it was probably 8 this morning)

-Balance: 1

-Sleep: 7--still stressed out, but MUCH better this afternoon

-Bladder: 3

-Anxiety: 2 this afternoon, was 7 this morning

Great afternoon, right? That's what happens when I sleep what most people would call a good amount (7 hours), get up and sit in a chair for a few hours on the computer and videophone, take a nap for a couple of hours, get up and sit on the couch for a few hours, go to a restaurant (someone else driving), come back and sit around for a couple of hours more, and go out and interpret. Interpreting did make me tired, but honestly, less than two hours of work for the day? I should be feeling good! And I'm happy that I am now.

Resting helped with my anxiety, because I had a better perspective on things when I woke up. Things make more sense when you're not exhausted. And my new friends on the MS forum helped with my anxiety. Honestly, just hearing that most of them lead pretty much normal lives made me feel so much better. They do need to slow down and pace themselves sometimes. They need to rest more. They have a rough time during exacerbations, which they don't have many of if diagnosed early like me. But they walk and work, which are huge for me. I'm still worried about the cost of my medical care, but I am trying not to worry about it too much until I speak with my insurance company. It might turn out that I need to pay very little. You never know. My heavenly father knows what my needs are--I'm sure things will work out according to his plan.

MS Center Research

Clinicoradiological paradox:
MS is more than counting lesions. The lesions on the brain don't always correlate with what is happening to the patient. Sometimes there are NO lesions related to a severe symptom.

Optical coherence tomography (OCT):
This is a way to assess retinal damage. It turns out that MS causes not only optic neuritis (inflammation of the optic nerve, which kills nerve cells--I have this on the left side) but retinal thinning. And retinal thinning is related not only to vision changes but to brain atrophy.

I learned on another website that brain atrophy in MS happens when a bunch of dead areas occur in the brain, and then the brain sort of collapses down on them. Sometimes there is no evidence of brain damage (no lesions) for years, and then suddenly brain atrophy shows up on an MRI. At this clinic, they are using OCT to predict who will have brain atrophy... and prevent it.

Project RESTORE:
REcover, STop, and REgenerate. Recover function, from acute attacks, and from illness. Stop progression of disease and progression of disability. Regenerate nerve cells and myelin. This all sounds great--hopefully they can do at least some of what they aspire. I saw that my doctor is involved with this project.

Clinical trials:
They are trialing three new drugs. One is combining oral estrogen with a common injected disease-modifying drug (DMD). Pregnancy puts MS into remission, so this one sounds promising.

Another trial is to make a common DMD last longer, so that it doesn't have to be injected as often. This is great, but I suspect the main reason they're researching this slightly modified drug is because the patent on that DMD will expire in a few years.

The third trial is of a completely new DMD--one for primary progressive MS. The rest of the DMDs are for relapsing-remitting MS.

Imaging:
They are experimenting with 7 Tesla MRI. Current "high" strength MRI is 3 Tesla, and most are 1.5 or less. I think my brain images were on a 1.0 Tesla machine. It is known that 25% more lesions show up using 3T compared with 1.5T. I wonder how many more would show up using 7T.

They are also experimenting with some imaging techniques I am not familiar with: diffusion tensor imaging, magnetization transfer imaging, and magnetic resonance spectroscopy.

Psychiatric and neurological:
One doctor is interested in the immune-mediated mechanisms of depression and cognitive impairment in MS and several other autoimmune neurological disorders. He is a psychiatrist.

Sensory neuropathy:
One doctor developed a technique to use superficial nerves to study sensory neuropathies associated with immune-mediated neurological disorders: MS and a bunch of others.

Inflammation:
They are researching how to protect nerves from damage due to inflammation. Also trying to understand how new neurons are produced.


This is all going on at the MS Center where I'll see a neurologist on November 23. My guy is mostly focused on treatment--he's still an assistant professor and probably is still establishing his own lines of research.

I'm on the cancellation list, of course, and I certainly hope I can get in sooner!

Firing Dr. Gabby

Firing Dr. Gabby is going to be a process. Don't get me wrong, I can't wait to do it. The thing is, I need her for now.

I am using her for drugs. Never thought I would be using a person for drugs, but I am.

I'm certainly not using her for her expertise. I trusted her initially, but too many cracks have appeared in the facade. She changes treatment plans seemingly willy-nilly. She isn't familiar with more recent thinking about the poor relationship between MRI imaging and symptom expression in MS. She hasn't heard of some common MS symptoms.

When she told me that the bugs crawling feeling had to be depression, because it's not seen in MS, I took to the intertubes. It turns out that lots of people with MS have not only that but some even weirder sensory disturbances. Some people feel like liquid or wax are dropping on them. Some people feel like they are on fire (glad I don't have that one). Our nerves are all screwy. It seems like that could cause any number of "crazy" symptoms.

I can't wait to see the specialist. I hope he will listen to me with an open mind. I think I will really despair if he doesn't.

I'm going to post what I found about their MS center.

Today's Numbers and Good News

Sensory:

-Pins and needles: 2

-Hypersensitivity: 4

-Paresthesias: 1

-Numbness: 2

-Vision: 2--floaters bugging me sometimes

Motor:

-Gait: 3

-Sore muscles: 8--legs, esp. QUADS

-Fine motor: 2

-Weak muscles: 4

Cognitive:

-Language processing: 2

-Memory: 2

-Attention: 2

-Confusion: 3

General:

-Fatigue: 6

-Balance: 2

-Sleep: 7--stressed out after being diagnosed with MS for the second time in as many weeks

-Bladder: 3

-Anxiety: 5--after speaking with Dr. Gabby. She makes me mental. "Yes, you have MS, but certainly some of your symptoms are caused by depression. Bugs crawling?"

I have an appointment with an MS specialist at a major MS Center in the #1 neurology department in the nation! November 23. It feels so far in the future, but I'm glad to have gotten in. Praying that this person is good.

I'm also praying that I can make good treatment choices, for drugs, supplements, and diet.

Another Wasted Copay AND Direction Change

I saw the other neurologist, Dr. Ronnie, today, and she had her mind made up before she even examined me: she just reiterated what Dr. Gabby had said. And she suggested that I might have a history of sexual or physical abuse. She ordered a blood test for HIV and a few other things. She emphasized that there is nothing wrong with me. My tests show absolutely nothing (huh? what about the scarring on my brain?). Maybe it's a virus but most likely all in my head. So that was discouraging. Waste of a copay!

About two hours later, the eye doctor called me. It was Dr. Sinday, the one Dr. Gabby referred me to: I had seen her on Thursday. Today I got the results: left optic nerve pallor. Apparently that means nerve damage. It's the same eye that had delayed processing. Together they confirm MS.

So now Dr. Gabby is firmly on the MS train. The eye doctor asked if Dr. Gabby had already called me (nope) and said that Dr. Gabby wants to start me on the drugs ASAP.

Unbelievable. I guess they finally found something I couldn't possibly be making up (besides, oh, the scars on my brain).

I looked up an online support group and was reading through some people's experiences. Some go 10 years and a dozen neurologists before getting diagnosed with MS! I can't believe that. I thought three neurologists was a lot. The one today implied that I'm doctor hopping. I guess I am--since they are all useless so far.


People also commented about previous "diagnoses," which included psychiatric ones. MS patients apparently are often called crazy for years, until they get so bad off that no one can deny their symptoms. That is positively criminal.

I'm going to ask for a referral to a specialist. Not sure how to find a good one, but I don't think I trust Dr. Gabby anymore. I guess I'll let her start me on ACTH. That seems to be a widely accepted medication for inflammation. I wonder if I should let her start me on the MS drugs. It will take weeks or possibly months to see a specialist. I feel like I'm choosing between speed and accuracy, and how can I make that choice? I want to get better and not have another attack!

Whew. What a crazy day. What a crazy few weeks.


I didn't realize how far back into denial I had gone until after hearing from Dr. Sindy. Now I'm anxious, unsure, and feel close to tears. I think I'm anxious because I don't trust my doctor and am not looking forward to the effort it will take to get in to see a specialist. And I'm nervous another neurologist will put me through the same turmoil I've been through with all THREE neurologists I've already seen!


I feel like I should file a complaint with the licensing board. They have been really irresponsible.

Struggling

I am pretty weak and tired today, and it was hard to interpret at church. I just wanted to lie down. I wanted to be at church, but my body was begging for rest.

I slept okay last night, except that I woke up at 4:30 and had some trouble going back to sleep. It was hot. Or I felt hot, anyway. So I slept off and on until it was time to get up, at 7:00. I probably got almost 8 hours of sleep altogether, but maybe I needed a little more. I hope I'm not getting worse again.

It's only noon, so things might change (usually mornings are better), but let's go ahead and do the numbers for the morning.

Sensory:

-Pins and needles: 2--right heel

-Hypersensitivity: 4

-Paresthesias: 1

-Numbness: 2

-Vision: 1

Motor:

-Gait: 2

-Sore muscles: 5--mostly my arms. Fault interpreting.

-Fine motor: 3

-Weak muscles: 6

Cognitive:

-Language processing: 2

-Memory: 1

-Attention: 2

-Confusion: 3--ready to throw my socks in the trash, forgetting where the milk is, etc.

General:

-Fatigue: 6

-Balance: 2

-Sleep: 3

-Bladder: 3

-Anxiety: 2

I'm nervous for the new doctor tomorrow. I hope she listens to me. And I hope I can think well tomorrow.

Plateaued But At Least Not Low

I'm doing about like yesterday, just more sore.

Sensory:

-Pins and needles: 2--had some in right heel

-Hypersensitivity: 2

-Paresthesias: 2--still in my thighs, had some in the morning and evening

-Numbness: 2, nearly gone in fingertips

-Vision: 1

Motor:

-Gait: 3

-Sore muscles: 6, and I mostly lazed on the couch. I woke up with that "hardcore workout yesterday and hurting today" feeling. Guess my little trip to the mall yesterday came back to bite me.

-Fine motor: 2

-Weak muscles: 5--Interesting that soreness increased but weakness really didn't.

Cognitive:

-Language processing: 1

-Memory: 1

-Attention: 1

General:

-Fatigue: 5

-Balance: 2

-Sleep: 1

-Bladder: 4

-Anxiety: 1

Dr. Gabby Is a Jerk

I regret attending my follow-up appointment with Dr. Gabby. Her EEG tech was right: she is a jerk.

After arriving half an hour late, she had difficulty accessing my spinal tap results. She was completely unprepared to see me. It took a while, but she got someone at the hospital to read them to her. All normal.

My auditory evoked potentials were normal. My visual evoked potentials were delayed.

She suggested fibromyalgia, MS, depression, anxiety, or a nervous breakdown. Seriously. And she brought up migraines, "just to make sure."

She dismissed fibromyalgia, because patients with it complain of pain, which is not a primary complaint for me at all. And they don't have white spots showing up on MRIs. And they don't have bladder issues. Or disturbances in evoked potentials. Yeah, probably not that.

She admitted that my symptoms do fit an MS diagnosis.

However, she felt that I must be depressed, because I was not "my old smiley self." Excuse me? Number one, I'm not smiling at you because I don't like you. Number two, I'm not smiling because you hit me with a diagnosis without providing follow-up education or support, and now you're changing your mind. And suggesting that I'm crazy. I asked what signs of depression I have, and she said tiredness. Um, people with MS are known to be tired, no?

She suggested anxiety but didn't really go into it much, focusing instead on my alleged depression.

Nervous breakdown. I can't even believe she had the audacity to say those words. And she meant it--she wants me to see a psychiatrist (not psychologist). She described a man who was paralyzed on one side of his body and he ended up having a psychiatric disorder and nothing neurological. Yeah, except that I have SCARRING ON MY BRAIN. She couldn't really reconcile that.

Migraines... She asked if I'm sure I've never had them. YES!!!!!!

Here are some Dr. Gabby inconsistencies:

1. Two weeks ago, she looked at my MRI, turned to me while pointing to one of the images, and said, "My dear, you have MS." Now she is simply ruling it out. And she stated (lied) that she had never said that I actually have it.

2. Two weeks ago, she looked at my MRI and said, "These are classic MS lesions, look here. Who was the other neurologist you saw? No, no, no, he should not have missed these. This one is quite large. Look, one is in the memory loop, and the other is in the temporal lobe." Apparently she forgot about them, or she isn't sure anymore.

3. Two weeks ago, she said that I had to get the MRIs, evoked potentials, and spinal tap completed within three business days so that she could see me within five. It was important that I get on the steroid and disease-modifying drugs immediately. Now... she's okay with the steroid. Disease-modifying drugs are suddenly off the table.

4. Two weeks ago, she said I would be taking Nuvigil to combat my fatigue. Now an anti-anxiety/depression should take care of it.

5. Two weeks ago, she said that I would have patient education. It never happened.

6. Two weeks ago, she said she would fax a request for steroid approval to my insurance company immediately. Now she let me know that she had waited until now.

7. Two weeks ago, she said that the spinal tap results might be positive or negative, depending on the phase of the disease. It wouldn't make a difference in the diagnosis. Now the fact that it was negative is somehow meaningful.

8. Two weeks ago, she said that it is nearly impossible to identify areas of damage on an MRI of the spinal cord. It wouldn't make a difference in the diagnosis, because it isn't correlated with symptom severity anyway. Now the fact that no damage was found means that I shouldn't have symptoms.

Funny, her staff were all abuzz with the fact that she had diagnosed me with MS before finishing all the tests. Suddenly she's Careful Cathy? Maybe someone said something to her?

And I found out that she lied about the other neurologists in the practice. She said that they only do seizures and migraines. Apparently not. And she said that the practice was breaking up and going in a different direction, which is why she's leaving. The practice is not breaking up. She is leaving and another doctor is replacing her. That's it. She also accused them of being in it for the money, that they are trying to get more "procedures" and do more sleep medicine, because that's where the money is. Funny, she gave me the brochure for the new practice she'll be in... It's a pain clinic! They do injections, back surgery, etc. Procedures.

I'm so offended and frustrated that she accused me of having a nervous breakdown or making up symptoms. She admitted that I couldn't make up the scarring on my brain or the delayed visual processing. But she still was adamant that I have depression. I'm frustrated that this will be in my medical record.

She brought up the fact that I'm single, as if that were relevant.

Do single people tend to invent health issues? When I told a good friend about this, she reminded me what the first doctor said after she described her symptoms of hair loss, dropping things, tiredness, and losing 40 pounds in two months: "How's your marriage?" Unfortunately, I don't have a large thyroid tumor to point to in the face of medical lunacy.

Do single people have more nervous breakdowns? Frankly, I know an awful lot of nutty married people, so I don't think marital status is medically significant.

I didn't even think that nervous breakdown was a clinical term.

I talked with my best friend about it, and she suggested that Dr. Gabby was probably kindly asked to leave the practice. I suppose there might be truth to that. She has certainly behaved erratically with me. Remember how she forgot who I was last week and asked me if I had had a bubble test done? What on earth is a bubble test?

And there was the comment that the EEG tech made about her patients going downhill fast. Maybe she's just a crappy doctor.

So do I really have MS? My symptoms do fit that diagnosis. And there is definitely something wrong with me. But I'm getting better now. Although part of me wants to let it go and get back to my life, part of me is scared that it will happen again. I guess I need to continue working to get a diagnosis. If it's really MS, okay, I'll handle it. If it's something else, that will certainly be awkward telling people oops it wasn't MS after all... but I can handle that, too.

I heard back from a psychologist who was recommended to me. She is a member of my church, which is what I wanted. She doesn't seem to be very good about answering email. Hopefully she is a good shrink. Now I'm not even sure what I'll talk about with her. I haven't felt anxious in five days. I worked through it last weekend and have been tons better since then. My sleep problems have vanished. Getting healthier might have something to do with my stronger emotional health, but I think I'm also kind of a "Oh my gosh, what will I do??" person for a while then get over it. Even if I'd still been very sick this week, I probably wouldn't have been mentally stronger anyway. I had a rough week last week, but I've been pretty well-adjusted for the past three months, considering everything I've had to deal with. I think. I wonder if a psychologist can diagnose or rule out depression. She can send her report to Dr. Gabby. I'll give it to her myself, so I can stick my tongue out at her. Jerk.

Another Good Day

Oo! Oo! Let's play the numbers game again:

Sensory:

-Pins and needles: 1

-Hypersensitivity: 3

-Paresthesias: 2

-Numbness: 2

-Vision: 1

Motor:

-Gait: 2

-Sore muscles: 5--walked partway into the mall and back, was sore from that

-Fine motor: 2

-Weak muscles: 5

Cognitive:

-Language processing: 1

-Memory: 1

-Attention: 3

General:

-Fatigue: 5, but I worked a full day and went to the mall and the Post Office--haven't been able to do that much in a while

-Balance: 2

-Sleep: 2, because it got hot around 4:30 and I was too lazy to get up and turn on the fan. I went back to sleep but woke up several more times before I had to get up at 7:00.

-Bladder: 4, still trickling and needing to push

-Anxiety: 1

Still Getting Better

I had a bad appointment with Dr. Gabby this morning. I don't have time to write about it now, but I want to tomorrow or Saturday. For now I'll just do the numbers thing:

Sensory:

-Pins and needles: 1

-Hypersensitivity: 2

-Paresthesias: 2

-Numbness: 1.5 :)

-Vision: 1

Motor:

-Gait: 2

-Sore muscles: 3

-Fine motor: 2

-Weak muscles: 6

Cognitive:

-Language processing: 2

-Memory: 2

-Attention: 1

General:

-Fatigue: 3

-Balance: 2

-Sleep: 1

-Bladder: 4

-Anxiety: 1

Despite the discouraging appointment this morning, I still had a great day. Look at those numbers! Weak muscles are really the main issue right now. And the bladder thing, I guess. But I didn't have the wave of fatigue hit me at all today. First time in like a month that I've gone all day (and it was a long day) without needing to nap or rest-almost-nap. I really hope I'm getting better for good!!

Numbers Game

First, I haven't had to do much today.

Let's play the numbers game:

Sensory:
-Pins and needles: 1--only if a bit of pressure on a limb
-Hypersensitivity: 3
-Paresthesias: 3--driving me NUTS all evening
-Numbness: 1--still some on my fingertips and right foot but improving
-Vision: 1

Motor:
-Gait: 4
-Sore muscles: 4
-Fine motor: 2
-Weak muscles: 7 for legs, 5 for arms

Cognitive:
-Language processing: 2
-Memory: 2
-Attention: 1

General:
-Fatigue: 3 for morning and evening, 7 for afternoon
-Balance: 3
-Sleep: 1 :) :) :)
-Bladder: 4--have to push or it will be a little trickle and not empty my bladder
-Anxiety: 1

The bladder issue is getting worse but slowly. Motor is definitely the main problem today. I think sleeping enough helps the cognitive issues. Maybe. Overall I'm pretty happy with how I'm doing.

Weak and Shaky

Weak and shaky are the words of the day. I slept almost 10 hours (yes, it felt GREAT), and I'm not really tired, but my muscles are weak. It feels like I skied hard all day yesterday, and now I have jelly legs. My arms are weak, too. I couldn't carry a shopping bag with my arm bent to hold an umbrella. I could carry it if my arm was straight down at my side. It wasn't at all heavy.

Yesterday I worked a full day. Wow! I drove (not well) to work and (well) back. It was weird that the afternoon was better than the morning. I did rest and almost fall asleep for about 20 minutes during lunchtime. I felt better after that.

But I was ready to crash by 6:00. Like a toddler who skipped her nap.

I'm going to see Dr. Gabby tomorrow. My goals are:
-Get the spinal tap results.
-Get a handicapped parking tag.
-Find out if my ACTH was approved.
-Get her to start the approval process for one of the ABC drugs, if she hasn't already.
-Learn more about IVIG infusions and make sure she's working on that if it's something I want.
-Get referrals for PT, OT, urology, and possible SLP. I don't need referrals for my insurance company, but if there are people who work with MS frequently, I would be interested in that.

Of course I would take any referrals by Dr. Gabby with a grain of salt, but it can't hurt to ask.

And I'm considering calling a major hospital nearby to ask about their MS clinic. I might want a third opinion there, and it would probably be a good place for PT and OT consults.

And I still have my appointment set for Dr. Ronnie on Monday.

But the good news is no pins and needles again. Five days and counting!

Tuckered Out

We went back to the grocery store and shopped 'til I dropped. I wore. My. Self. Out. My body is begging for sleep, but I don't want to take a nap at 4:30.

I'm done having MS. I appreciate the experience, but I'll take my old body back, thanks. I remember when the biggest body worry I had was being fat. I didn't know how good I had it!

Gaining Ground

I am doing so much better today! I didn't sleep great but okay--7 hours but woke up a few times. Nevertheless, I'm doing well today.

I was tired when I first got up, but I started feeling stronger around 9:00. I answered some work emails and made my schedule. I should have made my schedule more than a week ago, but it was too overwhelming to tackle. I had to fit in a bunch of kids at a bunch of schools, all of which have different schedules. But I did it!

I was feeling shaky and kind of weak still, but at noon I went with my friend to lunch, a craft store to pick up an order, and the grocery store. I asked to drive on the way to the first location. I haven't been able to drive in a week. I was not a great driver... I kept drifting to the right, and I had to pay attention to the speed of the cars in front of me, lights, etc. But I did okay. It required more concentration than normal, but I could do it. I let my friend drive after lunch. I had just wanted to see if I could... no need to wear myself out.

At the grocery store I looked longingly at the motorized carts but decided to try walking it. I figured that if I got super worn out, well, at least I didn't have to go anywhere afterward. But I did fine! Unfortunately we had to leave early because I was sick. My friend was sick, too. Darn lunch. We'll have to go back later and finish our grocery shopping.

From being stuck on the couch on Wednesday to barely sitting on Thursday to walking slowly on Friday to needing rest every two hours all weekend... to today, walking around the grocery store! I'm so happy to be doing better and hope this continues. If I feel the same tomorrow, I'm planning to drive myself to work.

Good Evening

I went to a friend's house for dinner and had such a good time. I was weak and shaky but at least had had a nap, so I felt alive.

I was so afraid I would drop food dishes as they were passed around. I had to put them down very quickly, because they were too heavy for me.

But I had NO pins and needles. Two days now!

Hypersensitivity and weakness are out of control though. :(

At least my head doesn't feel too heavy. And I was able to sit up the whole time I was there--two hours.

I am so glad that I went, because I felt normal. This friend knows about my MS, and I assume she told her husband, but her kids don't know. Kids aren't terribly perceptive, so I'm sure they didn't notice my weak, shaking hands. I was just like anybody who might come over, which was nice.

Confronting Anxiety

Last night I didn't take anxiety or sleeping medication. I had a few anxiety attacks in the evening, and I handled them using the steps I found here: http://www.anxietycoach.com/overcoming-panic-attacks.html

I couldn't remember them all, but I did remember the first A: acknowledge and accept. I'm finding that just verbalizing the fear internally is incredibly helpful for me. I can't push the fears away, because they will keep coming back. "I'm feeling afraid that I might not be able to handle my job." That sort of thing.

And I turned off the TV by 9:00 and listened to calm music. I chatted with my friend when she came home from a work get together, and when she brought up topics that would be worry triggers, I said that I don't want to talk about that.

I fell asleep without a whole lot of problems.

I woke up early in the morning (didn't look at the clock but guessing around 2:00?) and fell asleep within 15-20 minutes. I woke up again at 4:30 and fell asleep after about an hour. The first time I had one chest-tightening moment, and the second time I had a few. But they were brief when I used the acknowledge and accept thing. It also helped to remind myself that it would pass. The more I used the tools I had read about, the quicker the anxiety did pass. It really worked!

I had anxiety pop up a few times during church, and I used the techniques--each anxiety event lasted less only a minute or so.

I'm so glad that I decided to work on this myself. I didn't realize how often anxiety was hitting me. Now I feel like this is something that I can handle. I still want to see a shrink, but I'm happy that I can help myself.

Rest and Energy

I had a good day today. I was so excited to go to church again. I got up at 7:00.

Beforehand I asked my deaf friend to choose one meeting for me to interpret--I knew that I couldn't do all of them. That is progress for me, recognizing that I can't do everything and letting someone know. She chose the second meeting.

Someone else interpreted the first meeting, which was good, because I just wanted to lie down. It took all my strength and willpower to keep sitting up for the whole hour.

Then I interpreted. Not fantastically, but good enough. I still didn't feel well.

Someone else interpreted the third meeting. As it began, I started to feel better. Then I started to feel really good! I was glad that I had stayed for all three meetings.

At home I continued to feel good. I helped make lunch and tidy up the kitchen. I commented how much more I was able to do, and my friend acknowledged it.

We ate lunch and watched a movie about the deaf experience in France. The movie was in French, subtitled. Very good, but an hour in I started drifting off. When the movie was over, I went to my sister's bedroom, which is downstairs and therefore more accessible than mine, and took a nap. I fell asleep before long, and I think I slept almost two hours. I needed that!

See why this was a good day? I had energy in the morning while preparing for church... 7:00-8:30. My energy took a dip but came back with rest. I had energy again 11:15-1:15. I rested/slept 2:30-4:20. I'm feeling weak right now but hoping I will have energy again to go to dinner at a friend's house.

Radiology Second Opinion

My best friend from out of state who didn't come up to see me this weekend? Her brother is a radiologist doing a fellowship in neuroradiology. I spoke with him on the phone this evening, and he offered to look at my MRI images. I'm going to get them on CDs and send them to him. I really appreciated the offer.

Not an Addict

I'm not an addict, and I don't want to become one. I'm not going to take the Lexapro or Ambien. I'm going to try cognitive-behavioral strategies first. I found one online that was helpful to me when I felt anxious/panicky this afternoon.

I was looking at the definitions of the various anxiety disorders. I'm not sure I have generalized anxiety disorder. I wonder if it's more of a PTSD thing. I've had a few traumatic events in the last week or so, which seem to have traumatized me--I get the hot tightness in my chest when I think about them. I'm working on that and was pleased that I went through it okay this afternoon instead of pushing the thoughts away and having them try to come back over and over again. I don't want to mask the feelings with medication. With the right tools, I know that I can handle them.

I really want to see an LDS shrink.

Ambien

I am still nervous about taking Ambien, and I was checking it out online. I saw some information that said it will not help if you wake up early in the morning. That's me! I don't have a big problem falling asleep. I just can't get to back to sleep if I wake up.

I think I will try not to take it tonight. What I need is to solve my anxiety problem, which I believe to be the underlying issue.

Sleep Disorder

I slept seven hours, woke up still exhausted, but couldn't get back to sleep. I need to figure out this sleep disorder. I was googling the effects of sleep deprivation, and I saw that you can't catch up on just a few good nights of sleep--and seven hours is not a good night of sleep for someone with MS.

But I don't think I have a sleep disorder, per se. The more I think about it and pay attention to how I'm feeling, the more I believe that I have an anxiety disorder, which is affecting my sleep. I usually fall asleep fine. I did take more than an hour to fall asleep last night (after taking 5 mg of Ambien), but typically I'm asleep within 15 minutes. The problem is that I can't stay asleep all night. Thoughts keep me awake.

I'm worried about the habit-forming effects of Ambien. I really don't want to take it, but seven hours of sleep is certainly better than four.

Hopefully Lexapro will help. I took the first one last night. It takes a few weeks for it to start working. I would like to try therapy, though, because I hate to rely on pharmaceuticals. And I am planning to decide on a firm bedtime and stick to it, maybe develop a routine, and try some lavender oil. Can't hurt to try.

Today I have felt nauseated, achy, tired, sinus headache, and had a bit of a cough. And hypersensitivity through the roof. I wonder if I have a cold or flu. I think it might have started yesterday and I just assumed it was the MS. I took some non-drowsy cold/flu medicine a little over an hour ago. My aches are tons better, I'm not coughing, and I feel more awake. I guess we'll see how the day progresses. Of course I do NOT want to be sick on top of everything, but I would be relieved if it's not the MS making me feel this badly. I can't do anything right now, because I'm exhausted and feel crappy.

Sleep deprivation affects not only your energy level but also your cognition. It can make you forgetful and have difficulty processing things. I have that anyway! I feel like I need to get the anxiety and sleep under control so that I can sort out how much is the sleep problem and how much is MS.

Bad Dream

My friend from out of state canceled on me. That was disappointing. She sent flowers, which I appreciated, but it just reminded me that she's not here.

Last night I went to a church social and made two new friends. One is a nurse, and I ended up telling her that I have MS. Both of these ladies were so nice and have checked in with me today to see how I'm doing.

Today was a tough day. At work I just wanted to lie down. Good thing I work with young kids--older kids might be more than I could handle. My brain is tired, not only my body. My students today were doing work like, "What is your favorite food?" That was totally my speed.

I came home from work and tried to sleep. I'm a horrible napper but was able to sleep a little. I dreamed that I was typing something and when I went back to read it, it didn't make any sense. I was horrified at the mistakes I made... It was a very upsetting dream. I was glad it was only a dream.

I wish this were all just a bad dream.

I spoke with Dr. Gabby today. I already decided to switch neurologists and have an appointment with Dr. Ronnie on September 12. But for now I'm stuck with Dr. Gabby. She's done some things that I don't like, and I've heard bad things about her. Anyway, today I begged her for anxiety medication, and let me stop by and pick up a sample of Lexapro. If I like it, I should call for a prescription next week. And she wants to see me next week to review my test results. She said that the spinal MRIs were clear. That's good.

She mentioned me starting IVIG treatments. I googled it and found that they are two-day (5 hours each day) IV infusions. It looks like I'd need to have the first infusion in a doctor's office or clinic or something, and I would be sent home with the IV in for the second infusion. Then I'd go back to have the IV removed. I don't know how that would work out with my job... Could I go in the evening? Of course I'll have to make it work. Maybe go on a Friday and give myself the second infusion on a Saturday. I can see that my future will be filled with needles.

I think I've lost my appetite. Am I depressed?

Still Here

Got a blood patch. It worked. Not fun--basically a second spinal tap. But so, so worth it, because my headache is gone.


I'm sleeping 4-5 hours per night, which is probably making me crazy. Despite being absolutely worn out yesterday and getting home late last night, I slept 12:30-4:30... and couldn't go back to sleep. I've been up since 4:30! I want to sleep!


The neurologist on call prescribed Ambien. I'm kind of nervous to take it, but I'm going to give it a try tonight. I can't function like this.


I really think that the lack of sleep is preventing me from feeling better. Let's do the symptom scores:


Sensory problems:
-Pins and needles: 2--right foot, that's all
-Hypersensitivity: 6
-Paresthesias: 2
-Numbness: 2--just a bit on my right foot and fingertips


Motor problems:
-Gait: 3
-Sore muscles: 6 (not including my back--separating blood patch side effect from MS symptoms)
-Fine motor: 2--writing
-Weak muscles: 7


Cognitive problems:
-Language processing: 2
-Memory: 2
-Attention (adding this one): 3--trying not to, but missing things that are said to me because I'm not listening for a second.. or more than a second


General problems:
-Fatigue: 7 (amazingly... it definitely was worse yesterday, but I'm being honest that it's a 7 today)
-Balance: 2--sway when I stand still, mild trouble with direction changes
-Sleep (adding this one): 8--four hours is unacceptable--MS info says ten is more like it


New problems!
-Vision: 2--I have some "floaters" (a nurse friend said that's what they're called)
-Bladder: 2--trouble initiating, trouble getting it all out--better today but has been rough sometimes this week
-Anxiety? Is this why I'm not sleeping?


As you can see, the sensory problems are much better, aside from hypersensitivity. The numbness and pins and needles are back where they belong: right foot and hand. My gait is not terrible despite being tired. My muscles are sore, but that might be from walking around while tired. I think the main problem is fatigue, and certainly some of that is from sleep deprivation.


I'm wondering if I am experiencing anxiety. I thought that anxiety means nervous, super duper worried, racing thoughts, paranoia, etc. Maybe I had the wrong idea. I think it is normal to feel anxious after having been given a diagnosis without follow up information or care. I'm going through all these tests... My arms look like a drug addict's... I'm all strung out on no sleep...


Why can't I sleep? I go to bed and fall asleep okay. I wake up during the night, which is normal for me--I'll wake up once or twice and go back to sleep. The problem is that now I don't go back to sleep. If I wake up during the night, I'm up. Not up and walking around but up and awake. I think, of course, but not "racing thoughts." Just normal thoughts. What will I do today, I need to remember such and such for work, remember when such and such happened. And of course I think about MS and what I want to ask the doctor. But it's not like I'm unusually worried or crying or anything. I do plenty of crying, but not in the middle of the night.


But maybe this is anxiety. Maybe I have too much on me right now. I guess I would be willing to try an anti-anxiety medication. I really don't want to become dependent on Ambien.