My B12 was a little low last year and I was way low on D. I have taken B12 ever since and my Dr. had me on prescription doses of D for a couple of months. Now I maintain with 2000 IUs of D a day. That seems to be working to keep my level of D up. The B12 I'm taking has also worked to keep my level up. No, there was no testing done to determine the cause of the parasthesia. The only tests were the EMG and the glucose tolerence test. My neurologist attributes it to the pre-diabetes and I have never been at peace with that. It and the tremor started so suddenly. What other tests are there? I do drink coffee. I stopped drinking caffeine last year when all this happened. I fear it will cause the tremor and parasthesia to be worse. I did not know about caffeine helping. I also get migraines. In fact the neurologist believes this is what caused my mini stroke. (I now wonder if I had a mini stroke or if the episode I had was MG. I plan to ask my Neurologist next appointment.) I wondered for years if getting off caffeine would help the migraines go away. I don't know. As my doses of Topamax increased and we got my level of D up and B12up and my blood sugar has gone down my migraines are happening less frequently. I still have things that can trigger a headache but the headaches don't turn into migraines as easily. As I have thought today about what you all have shared, I know that I am going to have to do better at resting when I get tired and pacing myself. I can't continue to push through indefinitely.
Thanks so much

What type of B12 do you take? Capsules? Tablets? Sublingual B12 (you put it under your tongue and it absorbs directly into the blood stream). I take sublingual every day. I had a severe B12 def. back in 1999 and only the sublingual brought my #'s up.

Since they said you had a TIA, did they do any clotting tests to see if that could've contributed. I don't want to make you dizzy but some clotting disorders, especially antiphospholipid antibody syndrome (APS) can go along with other autoimmune diseases. Have they checked your ProTime and INR?

Have you been tested for celiac disease? If not, please do! Having both a low Vit. D and B12 level would make me wonder about celiac disease. Go to the gluten forum and ask about it.

Watch out for foods that naturally contain MSG like tomatoes, yeast and cheeses. Those can bring on a migraine.

Sometimes doctors like quick fixes instead of having to think about something. If you don't feel good about a diagnosis or what they are doing, keep asking questions and asking for more ideas of what could be going on. It's your right! You pay them, they should give you a good service in return.

For the TIA, did they do a brain MRI to diagnose it?

I know it's hard to not push. I still have days when I do it cause I get so sick of not doing much!

Annie

Hi CKitty,

Welcome to the group! Well as you can see by all the wonderful responses, you've come to the right place. Having a great neuro you can comfortably communicate with is key. Write down your questions & concerns and take them with you to your next office visit. Any new changes, call him/her and let them know. Rest whenever you start to feel fatigued...even a short rest may help. Don't get over heated and cool down quickly if you do. Everyone is different with this disease and as you go a long you will learn what works best for you. We all know too well how frustrating it is not to be able to do all the things we could before this wonderful disease. After 10 years I still on occasion take on too much and the MG wins everytime. Take care and we are all pulling for you.

Hugs,
Pat

You are right, I have found a great place! Thanks so much for your encouragment and advice. By 11am today when I was just getting to work I felt like I needed to rest. I was just supposed to be starting my day at work. This is when I struggle. I did not want to turn around and go home. I worked 11:30 - 7:30 today. Could not eat all day because my stomach was a mess - Mestinon and Imuran. They don't always do this but some days they do and today was one of those days. This is one of those confusing days. Should I have gone home and rested? I don't know, but I didn't. Could my fatigue level contribute to the medication side effects? I've got to figure some things out as you said.

That I know of there were no clotting tests done and I have not been tested for Celiac. Yes, they did an MRI. The diagnosis of TIA was based on the description of symptoms I gave the neurologist which included a gray area of vision, imbalance and confusion after nearly passing out. The thing I did wrong is I did not go to the hospital right away. Like I have a tendancy to do I minimized it. I called for a co-worker but knew if I said anything else I would pass out. When she looked at me I was so pale it scared her and she froze and didn't know what to do. I laid my head on the desk and stayed that way for several minutes until I thought I could raise my head without risk of fainting. There was no one else nearby but me and my co-worker. She asked me if I was alright and I said I would be ok. I just ask her to call my husband. I was afraid to stand up because I knew I might pass out if I did so I sat at my desk until my husband came to get me. I had him take me to my chiropractor ( I know that was dumb) I have three herniated disks in my neck and I thought maybe that had something to do with it. I did not go to a hospital until three days later when the paresthia and tremor had started. My blood pressure was very, very high and my heart was palpatating. I had no history of high blood pressure. They did an MRI then, amongst many other things. They released me because they couldn' find evidence of stroke or heart attack. Suggested I see a neorologist and my general physician. I am taking B12 in tablet form right now.
Thanks everyone for your support, advice and information! You all are great!!
Thank you, Thank you!!

omg!!! the exact same thing happened to me once. tired, double vision as i was driving about 1-2 miles from home. i closed 1 eye and made it home .somehow got cell phone out did 911 but not send,sat in car for 15 mins and then collapsed on couch unable to move for 2 hrs. this was after having very short episodes of dvision for 3 yrs,being dizzy after getting up but not for about 10 mins later. fatigue i blamed on another health issue. dr[whom i love] said she didn't think that anything but dv was from mg. she meant the fast intense collapse. of course i got the lecture on yes call 911!! and i deserved it!! i trust her 100% but it so strange that the same things drs discredit sometimes do happen to others.

Hello! and Welcome!
I'm curious at your description of the gray area of vision and others I selected from your quote. Has the gray area stayed? Have you seen or been referred to a neuro opthalmologist or had any tests done on the eye itself?

I have a white area of vision loss that started immediately following the coiling of an unruptured brain anneurysm. My surgeon thought possibly it was a sort of stroke, but I have had field of vision tests that show the area, and a florisien (sp?) scan done that show there is no vascular reason for this area.

Apparently, the placement isn't exactly normal for MS, but the "hole" in my vision is consistent with MS, though they've never been able to dx MS on me in 14 years. I'm currently starting a round of testing at the MDA center here in Denver and I'll be posting the results.

Just wanted to get a little more info on this part of your post, and give you some direction for a possible explanation if this was in fact a TIA or not. The retinal specialist I saw could identify any type of vascular issue that would have been responsible for the hole.

Thanks so much for your reply. The gray area in my vision lasted for several weeks then finally went away. I have not seen or been referred to a neuro opthalmologist. As I understand it that is not consistent with a TIA. There should be no lasting effects from one TIA, right? You can have lasting symptoms from several TIA's. Here's the thing, I have passed out before from low blood sugar and this felt different than that. When I had passed out from low blood sugar twice before everthing seemed to close in on me and go dark. This time everything seemed to fade all at once, not close in on me. I don't know if that makes any sense. Before this happened I had been having this problem that is hard to describe. I ended up having a CT angiogram because of it. When I would look up not always but most of the time, my head would start to throb and my hearing would start to fade. I would describe it this way. When you see someone in a movie portrayed as though they are going to pass out they begin to fade sound into the background. That's what would happen to me. I wonder if I was starting to pass out - I don't know. But this also happened often when I would get out of my car and start to walk into a store or wherever or after sitting for a period of time and then after I had walked a distance. By the time I would get into a store I would have to stop and stand completely still and not talk. If I was with someone I would just say, my head is doing that thing and they would understand. After a couple of minutes I could start walking again. The doctors ruled out simply a change in blood pressure and were concerned about subclavian steal syndrome. Once when it happened I just kept walking to see what would happen. I started to see stars and it triggered a migraine. I had to leave the store and go home and rest. The vascular surgeon said to never do that again. Here's the thing, ever since I have been on Topamax for the parasthesia and tremor the problem has stopped. After that day at the office I had two other epidsodes when I felt the same way again. With every one of those events my eyes felt weird. Before I was diagnosed with MG I would say that my eye sockets feel tired which would make sense with MG, right? Since I have been on 100 mg of Topamax am and pm I have not had a nearly passing out episode either (as in the three events where my eyes felt weird and I everything faded) and as I said before my head has not done that weird thing. My eye sockets still feel tired when I get too tired even with the Mestinon and Imuran. I feel the parasthesia on a mild level every day but the Topamax has really, really helped from the very first dose. Any insight? Hope you are having a good day. Thanks so much for your help.

Xmas 25
Hope you are having a good day! Yes, it's always better to call 911. I am learning that we can really have some strange things happen to us medically and we think we are the only person they have happened to. That's one reason I am so glad to have found this site. Thanks so much for sharing your experience. I am new to this site and so glad to be here. Have a great evening!

Ckitty

Welcome to the forum! I am new also and have found it to be a tremendous help. Everyone is very kind and generous with their support. I've wanted to answer your post for several days but haven't felt strong enough to be posting for a few days.

I couldn't help but smile when I read your post. It was like someone quoting me word for word. I even had to read it to my husband. I was diagnosed 3 years ago and for 3 years have gone back and forth inside my head with the same questions and issues you spoke of - from the way my day starts struggling to be able to dry my hair, pushing through each day at work only to go home and collapse, not able to cook, grocery shop, do laundry, and wondering what my expectations should be, downplaying my symptoms, not wanting to complain, etc and etc.

Well, let me say, don't follow my example for the past 3 years. After 3 years of this, I finally couldn't go on (completely lost my voice, couldn't work, barely able to hold my head up and walk) and have had to go on disability for a while. DON"T try to force yourself to push through. Learn to listen to your body, have periods of rest through the day and don't ignore your symptoms.

My doctor told me to think of it this way:

With MG, you have one dollar to spend each day. You can't save some for the next day and you can't borrow from another day. The dollar has to last you throughout the day. If you spend 75 cents by lunch, then you're not going to make it until the end of the day. He said, spend your dollar wisely throughout the day. If you spend more than the dollar, you're going to have problems. You can't use too much of your muscles one day and expect to use less the next day and be fine.

It's really helped me to look at it this way. Everything we do requires muscle use, whether talking, walking, eating, breathing - on and on. We have to realize that and plan accordingly for the day.

Hope some of this helps you feel validated. It sure has made me feel better and also has helped me to take care of myself to hear everyone else speak about their life with MG and how "common" our un-common illness is for those of us who have MG. It has helped me understand and be able to figure out my expectations of life with MG and be okay with it - at least I know I'm not the only one.

Take care,

Hi Sharman, Glad to meet you! =) Welcome to the forum too! Read your post, and it just reminded me of "The Spoon Theory" shared by someone earlier in this forum. Tried searching for the thread, but couldn't find it.

http://www.butyoudontlooksick.com/na...poonTheory.pdf

Its like what your doctor has told you, and it has helped me a lot too. Hope you like it!

P.S.: To the one who shared the article earlier, thank youuuuu so mcuh!