Officially Diagnosed...

...Again.

I spoke with Dr. Harry today. He supported the MS diagnosis given to me (twice, lol) by Dr. Idiot Gabby.

My spine MRI was clear--no visible lesions. My Vitamin D level was 50, which is right in the middle of where it should be. My calcium level was fine; no increased risk for kidney stones for now (whew). I tested positive for the JC virus, which means that I am at increased risk for a fatal brain infection if I choose to use a medication called Tysabri.

The tests for copper deficiency, Sjogren's syndrome, neuromyelitis optica, and lupus were all negative. What a relief. Gee, it is only MS.

So I can keep my screening appointment with Dr. Rick next week. If I do not qualify for the study, I can speak with Dr. Harry about getting on a disease-modifying drug.

But that means I will really be injecting myself. This is suddenly more real. I have mixed feelings--let's save that for the emotions section, hm?

Meanwhile, I feel like I might be coming down with something. Hopefully it is not the explosive diarrhea one of my students had yesterday!

Sensory:

-Pins and needles: 4? This, dysesthesia, and numbness all blur together. It is hard to separate them.

-Tingles: 0? The pain blurs other feelings.

-Dysesthetic pain: 8. Seriously. I should have known when it was already a 4 when I woke up that today would be a doozy. It was up and down, but this evening has been absolutely out of control.

-Paresthesias: 1, foot buzzing, which has happened a few times each day lately

-Numbness: 5, partially numb legs and feet, plus tongue issues. This evening, I have been lying on my stomach, trying to give my sciatic nerves a break. Well, my arms keep getting numb, since I am bearing weight on them. Out of the frying pan and into the fire.

-Vision: 2, still on the blurry side, plus I am very light sensitive. 

-Nerve pain: 7

-Hearing: 0

Motor:

-Walking: 1

-Sore muscles: 3

-Fine motor: 3

-Weak muscles: 4

-Spasticity: 4, the regular tightness and some muscle twitches in my right glute

Cognitive:

-Language processing: 2, mostly having problems with written language

-Memory: 1

-Attention: 2

-Confusion: 0

General:

-Fatigue: 5

-Balance: 2

-Sleep: 4, had trouble sleeping again--bad dreams, waking up scared

-Bladder: 2, which is so discouraging

-Proprioception: 1

Emotions: I am relieved that I will get treatment. I am relieved that I am being believed. I am apprehensive about giving myself injections. Forever. The rest of my life! That is overwhelming. I am sad that I have MS. I do not think it has fully hit me. Maybe people are right that it takes a year to process and accept the diagnosis.

This cannot be my reality.

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.

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.

Rough Night

I went to bed at 11:00--I need to go earlier, but I end up talking with my friend every night. Last night she was saying that it's hard for her to believe that I have MS, because I look fine. I can't remember what I said, but I ended up crying. I cry when I think about it. It's so scary.

I fell asleep easily, but I awoke at 4:30 and had trouble getting back to sleep. I briefly slept from 7:00-7:20, but then my roommate's shower etc. noises woke me up.

I have a crushing headache.

My back hurts--upper back, like between my shoulder blades.

The pins and needles and semi-numbness are bad in my feet and also affecting my legs. It feels like someone is grabbing my left foot.

It's hard to think straight.

Faith or Denial?

I think I'm in a better place today. My back is still expressing its outrage at being assaulted on Friday, but it's getting better. I can sit supported for 15-20 minutes. I can walk a lot better.

I woke up many times last night but was able to go back to sleep, so I did get enough rest. Well, it seems like there's never enough. But close enough to enough. :)

I'm tired and weak today, but I think my brain is cooperating a little better than yesterday. I'm struggling with spelling sometimes. I was stymied this morning on the word biscuit. I kept typing buis... no that's not right... bius... buis.. finally had to sound out the beginning of the word. Good thing my mom taught me phonics!

I kind of had to laugh at a thought I couldn't get out this morning. I was telling my friend, "I emailed my parents to ask if there are any neurological or autoimmune disorders in our family. I heard from my dad, and he said in his family there are none. But um... my um..." A few seconds went by. I was going to talk about someone else... My friend finally prompted, "Your mom?"

Oh brother.

I've misunderstood my sister a few times. She said, "It fell over," and I thought she said, "I fell over." I was like, "Are you okay??" Yesterday she said something was off and I thought she said it was on. And I get VERY tired when she talks, because she talks so fast. I have to work to understand her. That kind of concentration is tiring.

And I'm making typing mistakes, which is unusual for me. Like lo instead of ol in a word. Looks like my brain is getting hit right now. The pins and needles have not been bad in my limbs.

I decided I was ready to watch the patient information DVD from one of the drug companies, called "Inside an MS Exacerbation." It was a two-minute animation showing the immune system damaging myelin and oligodendrocytes. Boo. My friend watched it with me, which was nice. I want the people around me to be interested in it and learn with me.

I'm trying to be careful about what I read online. I know that there is a lot of misinformation on the internet--when I look up any topic in my profession, 80% of the information is wrong or incomplete. I amin (I'm leaving that as an example of the typing mistakes I'm having to correct frequently) imagine it's the same for other professions. With MS being so poorly understood in general, I think it's safe to assume that reading online information will be useless.

I am similarly disinterested in online MS communities, because I wonder if you would see people with worse outcomes in those. Wouldn't people with good outcomes be out living their lives?

When my [young and clueless] home teachers came over Thursday night, one mentioned that there was a sister in the ward who has been living with MS for 30 years or something, that I should meet her and talk to her. I politely nodded but internally had a strong negative reaction. I do NOT want to meet her. I don't want to meet people that far along in it. I don't want to think that's what I'll become. And I don't even know what her situation is, and I don't want to know.

I re-read my patriarchal blessing, which I knew brought up health. Actually, it brings it up three times, and my blessing is not all that long. Reading that, I was thinking that I would be fine, but I also know that I've misread my blessing before. Sometimes we interpret things the way we want them to be. But I did feel better.

However... I know that denial is one step in the grief process. Some people get stuck in it for years. For example, the parent of one of my students accepted the disability when the child was six years old, despite having been diagnosed while still in the womb. The child did not receive some things that would have helped her during that time.

Faith and hope are good, and I'm holding onto them. But then I start to think, "You know, I'm fine. It might even just go away."Another reason it's hard for me to accept the diagnosis and move through the grief stages is that a couple of people around me have questioned it, thinking maybe I have Lyme. Every time other people question it, I do somewhat.

I wonder if I should talk to a shrink or something. One who is a member of the church would be nice.

So although I'm not sure I'm ready to meet people with MS, I do think I'm ready for patient education. I'm ready to talk about it.

Like I said, I didn't want to google multiple sclerosis. But I did want information, so I googled multiple sclerosis patient education. I found this website: http://www.nlm.nih.gov/medlineplus/tutorials/multiplesclerosis/htm/index.htm

My friend watched it with me. It was pretty basic information, which I knew from google searches over the past few months. But my friend hadn't been learning with me during that time, so it was probably good for her.

And I googled multiple sclerosis and hearing loss, because I did have drops in my hearing and tinnitus a couple of times... I want to say around March or April. Maybe May. It was short-lived (less than half an hour each time) and always went back to normal, but it was certainly weird. I found that about 6% of people will have hearing loss, but many more have hearing dysfunction due to lesions in the auditory pathways or cortex. Hm. We'll see what the evoked potentials testing shows. I'm really glad they're doing that. I'm not at all scared to lose my hearing, though. Losing my vision would be more devastating.

I haven't cried today. That's good, right?

Still Here

Last night I went to bed at 10:30 and woke up at 2:00 am! Again! I don't know why I wake up between 2:00 and 4:00 every morning. I'm still exhausted. I don't have racing thoughts, just regular thoughts. It's becoming really frustrating, because I'm tired enough as it is. I tried and tried to go back to sleep. And I did! Around 4:00 am. I woke up a couple of times but kept going back to sleep until 7:00. That is so awesome. I was oddly proud of myself for being able to get back to sleep.

Then I felt awful, like having the flu. And of course my back hurt. At 9:00, my friend sent me upstairs with orders to sleep more. I was discouraged and depressed. I wanted to give up. I sort of dozed... and then I slept! Not straight through, but off and on until noon!

Oh, I felt so much better. I woke up feeling clear headed, with a little bit of energy. Then my phone started buzzing. It was my bishop! He was pulling into my parking lot. Yikes, because I hadn't showered since yesterday morning, but I really needed some company. I was happy he called.

We talked for a long time. About an hour, I think. I told him what has been going on, and we talked about some other stuff. I love my bishop. I felt a little guilty that he spent so much time with me, because I'm sure his family misses him. But talking with him was so good for me.

People ask me what I need or what they can do for me. I don't know what I need, and I don't know how to ask for it even if I did know. I think I just need company for now. I need someone to talk to and cry with. This is a scary time for me. I don't want to be in a wheelchair. I don't want to go blind. I don't want to have MS. I was wondering why I want company when I have my sister and friend here, but I realized that what I need are people who aren't in it. My sister and friend are going through their own grief stages.

But I am seeing good in this situation. I'm close to the Lord right now. I want to go to the temple so badly, but I don't know if I can. It was so rough last time. Maybe if I have a temple buddy.

Other good things are coming from this, too. I guess I'm the carrot in the boiling water, not the egg. ;-)

Today was the first time I felt depressed about it. I've been tearful and hopeful and scared and grateful and many things. Sometimes just numb. Shell-shocked. Getting the news and having the lumbar puncture back to back was probably not the best thing. Or maybe it was. It's all so real now. I have to deal with this.

Well, I am healing from the LP, slowly but surely. I sat up for the first 10 minutes the bishop was here. Record breaking! Then my back was hurting too much to sit, but at least I didn't have the electric shocks. I took a shower--it's nice to feel clean now. I'm just getting through. I'm glad I don't have a lot of work to do this weekend. I have to write one progress note, which I'll do this afternoon if I remember. I keep forgetting stuff today. My mind is not very organized.

More about the Neurology Appointment

So... Dr. Gabby is great and hilarious and brilliant. Hilarious in an absent-minded professor way. Her office looked like a paper tornado hit it. She had papers everywhere! All over her desk, shelves, chair, and exam table. And books, too. And junk from drug companies. I didn't mind, because it reminded me of the offices of some of my college professors. And I don't care about the way someone (or their office) looks as much as the way someone is.

And she is smart. All over the place, but smart. Just what I hoped for! I wasn't valuing social skills as much as intelligence, but she's nice, too. After she told me point blank that I have MS and I started crying, she gave me a hug and promised to take really good care of me and make me feel better.

Like I said, she read my films and spotted two classic MS lesions--that means areas where my immune system has destroyed a whole bunch of nerves. Enough that together they show up as a white spot on the MRI. Just a few damaged nerves here and there don't show up. Dr. Gabby could tell that my body has been working on this for a while.

Looking back, I've had at least two attacks that I know of.

A year and a half ago, I had cognitive issues (fogginess, confusion, forgetfulness) and was tired all the time. It lasted about a month. That was after my gallbladder surgery. It took me a month to heal (after they said two weeks max), and then the next month was maybe an MS exacerbation. Probably from the stress on my body.

Three years ago, I had weak muscles with poor stamina. Having to put the car into park at red lights because I couldn't maintain pressure on the brake pedal... that sort of thing. And sciatic nerve pain. I went to a chiropractor (WASTE OF TIME AND MONEY), and they used an electrical stim thing on my lower back. That made it worse. So bad that I was having trouble walking. And I was tired all the time. I remember that my chiropractor appointments were around 5:00 pm, and I would be ready to fall asleep as I was leaving. After I stopped going to the chiropractor, I slowly got better.

So I guess maybe those were MS exacerbations.

Back to the neurology appointment...

It was kind of a blur. I remember her checking the feeling in my feet. Having me track her finger with my eyes. Touch tool then nose then tool then nose. Stand with my eyes closed (I sway). Walk with my feet touching, heel toe heel toe. I was bad at that. Disappointing given my gymnastics background. I could walk on the balance beam with my eyes closed!

We talked about what MS is and how it works. We walked about the medicines and tests I'll need. We talked about how the medicines work.

Besides the lumbar puncture that I had today, I also need two more MRIs: cervical spine and thoracic spine, both with contrast. The ones I had last week were without contrast. Dr. Gabby said that I need both, but with contrast is the more important one, because that's where she'll see the lesions. But she warned that spinal lesions are more difficult to spot than brain ones, so even if I have them, they may not show up. I have an appointment for the MRIs on Tuesday.

And I need an evoked potentials test. Auditory, visual, and sensory, I believe. I'll have electrodes on my head to measure my brainwaves. I guess they'll measure my processing speed for various stimuli. I'm not worried about that one--I'm geekily looking forward to it. It will be on Wednesday.

On Thursday I'll see Dr. Gabby again to review all the test results and make plans. So far I know that I have to start taking Vitamin D because it does something for MS. Low Vitamin D can precipitate an exacerbation. (Amazing that I might have trouble thinking of the word spoon but can bust out a word like precipitate--word retrieval problems are truly random.) And I need to take a lot of B12, which helps nerves develop. I definitely wants some of that!

I will need to start taking a drug called ACTH, which I think is only while I'm in an exacerbation. Again, the visit was kind of a blur. I'm supposed to call and see if my insurance approves it (it's expensive, of course) and also set up a time to be trained on how to inject myself with it. Should be fun times.

And I will need to start taking at least one of the ABC drugs. They slow the progression of the disease. Sign me up.

And I will keep taking gabapentin and maybe increase my dose. OH, and I told Dr. Gabby how I went off Dr. Dummy Barry's directions to take 600 mg at night and instead have been taking 300 in the morning and 300 and night. She said that's perfect!

I think that's everything.

Oh my gosh. I'm soooo tired.

More

I couldn't continue last night. I was handling it fine and didn't even cry when I told my friend and my sister. But around 9:00 pm I began to cry and had trouble stopping. My newly assigned home teachers came over around 10:00 to give me a blessing... I sort of wanted to say never mind, because I was ready to pass out around 8:00. I didn't end up going to bed until 10:30 or 11:00, but I woke up several times during the night and couldn't sleep any more after 4:30. I can't believe that! I was (am) exhausted. Why can't I sleep?

Crying + exhaustion = headache. This sucks. I feel like I could fall asleep any second, but apparently I can't!

I guess I'll take a shower now. I still have an hour until I leave for the hospital, but I have a feeling I'll be in slow motion today, just because I'm so tired. Darn, I can't eat. I feel nauseated.

I'm going to have a lumbar puncture today, aka a spinal tap. I'm nervous about it and hope I don't get the shooting-down-the-legs pains or a spinal headache. The impending hurricane only adds to my nervousness, that I won't be able to get the follow up treatment I need. Or that we have to evacuate while I'm supposed to be on bed rest (I think you have to lie flat for 24-48 hours afterward). I really don't think those things will happen, but there's always the what if.

OK, now I'm really going to take a shower.

Diagnosis Filled In

Multiple sclerosis. "Lots of scars."

My gut feeling was that it was MS, but somehow it still surprised me to hear the neurologist say that's what it really is. She listened to my symptoms and knew that's what it was. When she glanced at the MRI, she immediately saw two "classic" MS lesions, one of which was rather large and sitting right in the memory area--frontal lobe. The other one was in the temporal lobe, which probably explains the language processing difficulty sometimes.