Browsed by
Tag: ms neurologist

Secondary Progressive Multiple Sclerosis

Secondary Progressive Multiple Sclerosis

For my wheelchair evaluation, I’m going out…my wheelchair evaluation my neurologist needed to submit a letter of need. Due to the coronavirus, we did this via teleconference the second week of April. He’s been my neurologist for 22 years. He has files upon files upon files on May. We laugh, actually, at how many times my files have been thinned and moved to storage. My file still always remain as thick as medical encyclopedia. I explain this so you know…

Read More Read More

Teleconference neurologist appointment

Teleconference neurologist appointment

I have my neurologist appointment this morning. My second neurologist appointment admits the coronavirus isolation. Once again this will be a teleconference appointment as was my other one. I’m thankful that both my doctors know me so well. What would this be like if I was a new patient or something? I can’t imagine. This appointment was always scheduled as a checkup but now it is also serving as my wheelchair evaluation. I need to be seen by my doctor,…

Read More Read More

But it isn’t even 11am…

But it isn’t even 11am…

I was so happy to have nothing to do today. This week has been long already. However within the first hour of waking I realized things weren’t going to be as smooth as I would have liked. It started with a notification from Quest Labs. That is just one of the labs out here I do bloodwork at. Since my last bloodwork was done with my doctor on Tuesday at LabCorp I was curious what this was. It was on…

Read More Read More

Neurologist check in tomorrow

Neurologist check in tomorrow

I have one of my neurologist appointments tomorrow. I have two neurologists. One is the specialist in NYC at one of the big hospitals. She prescribes my main MS drug, currently Rituxan, plus recommends anything in clinical trials like biotin or statins. She’s a great neurologist but I don’t consider her my main neurologist. That is the one I have the appointment with tomorrow. This is the neurologist that diagnosed me 21+ years ago and has been my doctor the…

Read More Read More

Couldn’t hold myself up

Couldn’t hold myself up

This wasn’t good. I went to play mahjong for the second time yesterday. It is a game like rummy cube with Asian tiles. Your hands must match to an approved hand on a card. You play with four people around a square table taking turns picking and throwing tiles. Not very strenuous unless you have some type of multiple sclerosis symptom making it difficult. I had that MS symptom. At first I was fine, other than my game itself. However…

Read More Read More

An unexpected surprise at breakfast

An unexpected surprise at breakfast

A 45 minute trip from Saugerties to eat breakfast at the greatest pancake place ever. I did come off Keto for the morning and it was worth it. I had the greatest chocolate chip pancakes. The place was packed. We haven’t gone there in over 3 years because my sister hates the wait, trip and calories. To me, it was worth it. However the most amazing part of this whole thing was when I walked in sitting down was my…

Read More Read More

Neurological doctor appointment today

Neurological doctor appointment today

I see my neuro who I’ve been seeing now for over 20 years. These appointments always seem to upset me. Not the doctor, the reality of my disease. It isn’t that I don’t understand multiple sclerosis or I don’t know the current research, I like to think I am somewhat current on the disease. It is more going to a doctor and leaving with the knowledge that your not going to get better. It’s very silly actually because I know…

Read More Read More

Another strange MS symptom

Another strange MS symptom

I’ve had L’hermitte’s sign. It is defined by Wikipedia as: is an electrical sensation that runs down the back and into the limbs. The sensation can feel like it goes up or down the spine. It is uncomfortable. If you never experienced it, for me, I’d get these electric sensations down my leg. I’d get it without even bending my neck. At least it had a name. About four years ago, I started getting this symptom in my lower back…

Read More Read More

Self-love day 6- Doctors, doctors and more doctors

Self-love day 6- Doctors, doctors and more doctors

I’ve been eating right, exercising and going to the doctor as needed. A few weeks ago I saw my specialist for MS. I’ve been seeing a podiatrist for the fungus and the swelling blisters on my toes. Today I’m off to the vascular doctor to discuss the swelling in the extremities and see if I can get any answer to that. Then I have to make the decision if I want to go to the endocrinologist and go further to…

Read More Read More

Update on the European withdrawal on high dose biotin application

Update on the European withdrawal on high dose biotin application

As promised it was the first question I asked my neurologist. She explains that the study had 93 people in it. According to the study, over the course of a year, of the 93 people enrolled something like 20 of them had relapses that I never had a relapses before. That’s why they deemed that the high does biotin was not effective. This is the information on the application for the withdrawal. http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/004153/wapp/Initial_authorisation/human_wapp_000247.jsp&mid=WC0b01ac058001d128. Well my doctor explained that she, as…

Read More Read More

%d bloggers like this: