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…
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…
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…
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…
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…
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…
My mother sent me a text yesterday to write down the questions I have for the neurologist. It’s been 20 years, what questions do I still have for the neurologist? I know the research, I know what’s out there and I know what I’m on. Unfortunately, there is nothing for secondary progressive and therefore there is nothing that will stop the MS progression at this point. I’m very positive, but I’m also a realist. I’m not gonna run around with…
I kicked ass this morning. New workout and I stood on my feet for a record of 18 minutes. Omg!!! That’s incredible. Granted my feet can’t move too much, but that’s ok, that was an tremendous amount of time. In physical therapy, one of the main things they do for people with multiple sclerosis, or people that can’t really stand on their own anymore, is put them in a device that either stand them up or strap them in bars…
When I first was diagnosed, maybe in the first 10 years, I have to admit any little thing I felt I used to think immediately it was the multiple sclerosis. It took me a while to kind of know how MS showed in my body, really what MS was, and how it was going to affect me. Now that it’s been 20 years, I think what I find amazing is when other doctors don’t have an answer so they blame…
It just dawned on me, that February 14 was my 20 year anniversary with MS. It was the weekend of February 14 that I was moving it to my house with my ex-husband. My left leg started to feel numb. The numbness started traveling up my leg through my muscles. I wasn’t just numb, my muscles were becoming week and atrophied. It was The following Friday I went to a family doctor who sent me immediately to this neurologist. To…
