New Urologist

Sadly, the fantasticity (c) of yesterday did not continue.

I had a urology appointment today, for a 6-month follow up for my kidney stone and for my MS bladder issues. No specific concerns on the kidney stone front, although the doctor shared that I have a 50% chance of having a second stone in the next five years. Great...

She thinks I have demyelination in a nerve going to the bladder. Right, so she thinks my bladder issues are almost certainly MS related. She could give me a pill, but she wants to hold off until I'm on a disease-modifying drug. In fact, she was shocked that I'm not already on one.

Sensory:

-Pins and needles: 2, left thigh

-Tingles: 1 had a shooting tingle in one of my forearms

-Paresthesias (burning): 1, both feet

-Paresthesias (other): 1, electricity feelings in my left thigh, some buzzing in my feet--feels like a cell phone vibrating

-Numbness: 3, have lost feeling in my legs and feet sometimes. The lateral half of my left baby toe (along with part of my foot near it) is still numb all the time. And you're going to think I'm crazy, but I realized last night that there is a little numb patch on my RIGHT baby toe. What's up with that?

-Vision: 2, because of some minor focusing issues. And the floaters. I'm seriously starting to wonder why they are hanging around. Not getting worse, not getting better... just there. At least they are easy to ignore.

-Nerve pain: 2, left thigh--ah, sciatica

Motor:

-Gait: 3, bouncy, stiff

-Sore muscles: 2, calves, quads

-Fine motor: 4--I had trouble taking a pen from a cup at the doctor's office, trouble writing, fingerspelling

-Weak muscles: 4

-Spasticity: 3 for right gastroc, 2 for left gastroc, 1 for both quads

Cognitive:

-Language processing: 2

-Memory: 3

-Attention: 0

-Confusion: 2

General:

-Fatigue: 6

-Balance: 4

-Sleep: 2, I got 8 hours

-Bladder: 3

What's up with having a not-so-good day after getting eight hours of sleep? I didn't even wake up with a nightmare! I have a lot of bad dreams lately. Like every night.

Uhhh.... I can't remember what else.

Good Day But Numbness Increasing

I went to church today. I enjoyed it, but I became frustrated a few times. I was frustrated with weakness. I was frustrated with numbness--my feet and lower legs kept losing it (it being sensation). When I moved them, they would regain feeling, but there was no reason they should have lost it in the first place. I was sitting on a well-padded chair. The last thing I was frustrated with was my brain. Tears sprang to my eyes (but did not fall) when I had trouble understanding Hebrews. I do not have problems understanding the scriptures. Or did not.

Sensory:

-Pins and needles: 2, back/side of left leg, sciatic nerve from butt to thigh

-Tingles: 2, in arms, too tired to think back on where

-Paresthesias (burning): 1, left foot

-Paresthesias (other): 1, crawly feeling along the upper sciatic nerve (gluteal), also some mild electric shocks in the back of my left thigh

-Numbness: 3, numbness off and on: feet, legs (or just left? now can't remember)

-Vision: 1, a few floaters--they keep on keeping on

-Nerve pain: 2, left leg

Motor:

-Gait: 3

-Sore muscles: 4, calves mainly, also arms when interpreting

-Fine motor: 3

-Weak muscles: 5

-Spasticity: 3 for rectus femoris, 4 for gastrocnemius, bilaterally

Cognitive:

-Language processing: 3

-Memory: 4

-Attention: 1

-Confusion: 3

-Impulsivity: I guess this is off and on. I don't know why it would increase sometimes. Of course, I don't know why spasticity would increase sometimes.

General:

-Fatigue: 5

-Balance: 3

-Sleep: 4

-Bladder: 3

Griving: Nothing. I'm not thinking about MS much. Well, I'm thinking about it inasmuch as I notice spasticity or I register the feeling of electric shocks in my leg. But I haven't been processing feelings or making plans. I suppose I should before the MS Center visit, but that's no for two weeks.

OH, my urology appointment is this Friday. I don't know what to expect from that. Hopefully not another person telling me my problems are in my head....

Getting Better?

Sensory:

-Pins and needles: 1

-Tingles: 3, in my hands

-Paresthesias: 4, on the full 1800 mg dose of gabapentin today

-Numbness: 1

-Vision: 1

Motor:

-Gait: 2

-Sore muscles: 8 OMG my back was killing me this afternoon. Some flank pain but also weird upper back pain. Spasmy. Aside from that, I'd give the rest of my sore muscles maybe a 3 or 4. My spasticity was tons better today. I think the gabapentin helps with it.

-Fine motor: 2

-Weak muscles: 4

Cognitive:

-Language processing: 0

-Memory: 1

-Attention: 0

-Confusion: 1

General:

-Fatigue: 3--I went to work all day, came home for a while, then went out to the grocery store. I didn't drive to the grocery store in the evening--my friend did. But I walked around in the store. 

-Balance: 3

-Sleep: 3, got 8 hours--but maybe that's enough now?

-Bladder: 3

-Anxiety: 1

-Vertigo: 0, yeah, totally was the Nuvigil or the Solu-Medrol. My money is on Nuvigil.

Grieving: I cried a little today, not much. Felt anxious when I considered money. I mostly felt pretty normal emotionally. I suppose that is because I was feeling pretty well.

I forgot to mention that on Saturday I had some reddish-brown flakes in my urine. Definitely in my urine and not already in the toilet. It was the same color as my kidney stone before.. made me wonder. I passed stuff like that the day I passed my kidney stone, before the stone passed. Maybe I should be straining my urine, in case I have a stone and it doesn't hurt too bad? I don't know. I wish I had collected some of that to show the urologist. Whatever, I'll just tell her.

Oh, I'm seeing a urologist in about three weeks. Dr. Hilary wants me to get CDs of my CT scan from the ER in March, when I had my kidney stone. And the ultrasound from the urology follow-up shortly after that. All of my medical records related to that. So I have to get all that done. It's all such a pain in the butt. How am I supposed to get all this done and be sick (and hopefully get better)?

Good Internist?

I saw the new internist, Dr. Rob, today. I liked him! He was a little odd... like autism spectrum odd... but I'm cool with that.

He is not just assuming that I have MS. He wanted to hear the argument for it. I guess he accepted the diagnosis (he didn't say but stopped questioning). Then he wondered if I have primary progressive MS, not relapsing-remitting. Since it's been four months. Long flare. Or that I have something wrong in addition to MS.

He is not just assuming all of my problems are from MS. He pressed on some places on my back and knees, and sometimes it HURT. He seemed to have thoughts about it but didn't share. He did wonder aloud why I would have pressure points like that, because it wouldn't be from MS.

He questioned my medications. Even the Protonix, which no one has questioned before. He said it's a strong medication to be on at my age. He didn't say to stop taking it, just wanted to know what was up. And he questioned the gabapentin, saying I'm not taking enough. THANK YOU! He asked if it helps. I told him that it did, but I'm not sure it does now. He didn't think it would, at that strength. He increased me from 600 mg daily (300 am and pm) to 600 mg 3x day. I'll increase slowly, make sure I don't get too tired. He said I could try Lyrica if the gabapentin doesn't help me.

He found that my left leg is weak. I could have told him that. I also could have told him why: spasticity. That's my guess, anyway, but I didn't say so. Next week I'll ask whom I can see about that, like maybe a PT. We didn't have time for everything today.

He wants another brain MRI, with and without contrast. Oh boy. I made an appointment for that on Friday.

At my request, he referred me to Dr. Hilary for urology. I am supposed to have a 6-month follow up on my kidney stone, but mostly I want to talk MS bladder. Dr. Gabby said I have a spastic bladder. I feel like I'm not fully emptying it or something. Or it's thinking it needs to go when it's not totally full. And weak stream. Whatever, it's not normal.

I will see Dr. Rob again next Tuesday.

I am so blessed to be able to see him. He's been closed to new patients for over a year, but his secretary, a member of my church, got him to take me.