NeuroTalk Support Groups - In need of help!

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- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - In need of help! (https://www.neurotalk.org/myasthenia-gravis/92845-help.html)

Kate121,
I too am new to the group. I am glad to you posted your concerns because you have gotten so much good information that will benefit many of us. I was diagnosed with MG even though I am anti-body negative. I struggled with symptoms for a year and a half. My husband kept telling me that my left eyelid was droopy and I just ignored it. I finally took a picture of myself and took it in to my neurologist. My droopy eyelid is not drastic. After seeing my picture, he ordered a MUSK test which was negative. Upon exam such as upward gaze I have double vision. My arms are both weak upon exertion and none of the meds have helped much with that. Only my left eyelid has been droopy so far and the meds do help with that but it still happens when I get overly tired. I have been on Mestinon for a while which helped slightly but not much at all so he put me on Imuran as well because he wanted to avoid steroids. I have been on Imuran for about three and a half months and it has helped some as well but it can take up to six months to tell for sure if it is going to really help. At least that is what he has said and what I have read. The MUSK test and the neuro exam and my symptoms for a year and a half is how I was diagnosed. My neurologist wants me to go to Duke or Mayo to get a single fiber test if I am not feeling better after six months on the Imuran. Annie B has given me some good info as well. I want to read the book she told you about. I do get better with rest but right now am staying generally fatigued but I work full time and I think I am not resting as much as I should. I need to learn how to manage this disease. I know I have a great general MD. She ran every test in the book to try to figure me out. That helped give me some peace but I like you still don't have a complete peace that I am at the right place with my neurologist. I have parasthesia and tremor that was sudden onset in 2008 and I never felt like I got good answers about these and if more testing should have been done. I have read so many stories about patients who's neuros have ended up telling them they were depressed and prescribing anti-depressent drugs. I did not experience that and I am glad. I have also heard stories of people who's dr.s would not diagnose without positive antibody tests. My understanding is that I fall into the category of a small percentage of sero-negative MGers. I also have wondered why he wants me to wait to get a single fiber test. I too wonder if I need to change neuros and at the same time I think he has done some things right. I understand your struggle. Everyone here has been a great help to me in the short time I have been a member. It's a good place. Have a good weekend.:D

One note on the viral angle - the shingles and other herpes viruses can't typically cross the blood brain barrier, but in those who are immune compromised, either they do, or some school of thought is that the antibodies begin to mimic the virus. At any rate, the result is the virus in the CNS (central nervous system), wreaking havoc on the body through damage to the nerves.

Kate, You mentioned a lesion on an MRI - the lesions from the viral infection in the CNS also show on MRI's though differently than MS lesions. I really wonder if you shouldn't push for the blood tests for the Herpes family. I'm sorry, I'm having serious brain cramps today, and can't seem to remember the name of the condition that they are investigating on me. I'll PM you when I can come up with it! Probably later today - darn these brain cramps!!!!!

Hi Kate, welcome to this group!!

They're a great source of support, I'm still hanging ard here even though I dun have MG and they're suspecting something else.. Just can't beear not coming here anymore.

and oh yes.. Annie gives advice like a professional. She's better than a lot of docs which I've seen. :D

I too started with left sided weakness, which spread to the right. My left side is still weaker than my right, i'm always slanting to my right when I sit. They're currently looking at MND for me (not meant to scare you, there can be many other causes), as almost everything else has been ruled out and my emg showed probs with both my left and right, even though I thought my right was okay. Lol. I'm also a left hander!

One thing I learnt though, is to "fire" your neuro if he's not willing to listen and take your concerns seriously.

I'm just wondering, why wouldn't he do an EMG for you? Did you check with him? My emg showed my neuros what was wrong, so it may be of help in your diagnosis.

Quote:

Originally Posted by kate121 (Post 535533)

Annie, Becky, and Joan

Thanks for all your feed back. To follow-up on a few of your questions.

1. RE one sided weakness: for years I expected my diagnosis to be MS. It wasn’t until this episode that I started feeling weaker and needing naps nearly everyday that made me explore a broader differential of diagnosis (MS, MG, spinal muscular atrophy, and a few more). I’m not sure why my left side is weaker than the right, the only thing I can attribute it to is that I am left handed and thus left side dominant so it gets used the most.

2. Yes I did have shingles on my left forearm in February 2008 (It did cross my mind as to why I would have broken out with shingles during a time when I was otherwise healthy. For those of you that may not know, -Shingles is a latent form of the chicken pox virus. The chicken pox virus that many of us had years ago, can camp out your central nervous system. The antibodies that your body made against the virus are to large to cross the blood brain barrier so the virus virtually goes undetected in your nervous system. This isn’t a problem for most people as it doesn’t do anything while it’s hiding out in there. Should the virus get bored and try to escape then normally your body’s antibodies will kill it as soon as it merges. However when your immune system isn’t functioning optimally and is focused on something else, well then your body doesn’t see the little bug on the escape and you end up with shingles.) So yes its funny that you mentioned shingles. It’s just one more thing that shows how messed up my immune system has been.

3. Tests: MRIs in 2003, 2007, & 2009. I do have a lesion from L1-L3 (found in 2007) which has been read as benign and there was minimal change to it in June when I had my most recent MRI. Otherwise the rest of my brain and spine have been clear. LP in 2003 was also normal.

4. Hot & Cold: I definitely have an aversion to heat. I also believe that because the steroid infusions ramped up my body temperature for the last two weeks that, that may have played a big part in why my symptoms became even worse. Just knowing my body, I have a habit of trying to stay in cooler environments.

5. Thanks so much for letting me know that I’m not crazy. I couldn’t make sense of why I was having mental confusion if my hunch was based on a disease associated primarily with weakness. Just knowing someone else has experienced the same or similar things gives me more energy to continue bugging my Dr. to look at my concern for myasthenia further.

Update: I did start taking the provigil today that my Neuro prescribed. This has been the first day in months where I didn’t need to take a 4hr nap. I’m trying to pace myself and not do to much but it’s amazing to be able to wash the dishes and still have energy afterwards.
Seriously my sister and I have had a running joke for months now that my plan for the day is always to clean. But everyday off I always end up needing to sleep to recuperate before another day at work and the cleaning always gets puts off to the next day.
Just so you know I am actually a critical care nurse so I do have a lot of medical knowledge and insight. However my specialty is in pediatrics not in adult medicine. I didn't mention that I was a nurse in my original posting because I didn't want to inhibit any responses. I came to this site because I knew that the best knowledge and insight I could gain would be from all of your experiences and not something out of a book.
Now that I can think straight again and stand my ground I plan on insisting that my neurologist listen to my concerns more. Even though in my head I knew my thoughts were right I just needed a little push of encouragement. You guys have definitely given me that push and I can’t thank you enough. (Also on a side note my Primary MD is diligently working on getting me in for a 2nd opinion).

Kate

everyone,

wow you are all such an amazing group. Thank you so much for all your warm welcomes.

Not so sure on the viral angle because I hadn't experienced a recent illness. And usually most encephalitic cases progress extremely rapidly (within days, rather than months) but I will keep it in mind.

I did ask my neuro (who's a neuro-opthomologist) for an EMG just last week but he didn't agree with my concerns and wanted only to focus on his latest hypothesis. That is also one of the main reasons I contacted my primary MD on a referral for a 2nd opinion (still waiting to try and get into another neurologist). My follow up appointment with my current neurologist is tomorrow and I'm absolutely going to insist on an EMG and a few other tests.
(especially since everything has only become worse over the weekend).

For the last few months I've been trying to be the good patient so I didn't come off as the overbearing medical person. As a pediatric critical care nurse I have no problem advocating for my patients and families on issues that I think need to be addressed. At work I tend to be rather domineering, but when it came to advocating for myself I somehow became a little sheepish and go with the flow out of fear that my neurologist would otherwise judge me as an overbearing know it all nurse with a psych issue. Having all your feedback and encouragement lets me know that when I talk to my neurologist tomorrow and insit on the tests i've been asking for won't make me a crazy medical person it only makes me a normal person conserned for my own well-being.

Connie, I too have had concerns for a Motor Neuron Disease. For the last few months I kept feeling it was MG because I could see improvement after sleep (however many days I needed to sleep 16-20hrs to feel better).

However Since my symptoms started coming back 2 days after the steroid infusions everything has gone done hill rapidly. I'm having more and more periods of mental confusion (loss of short term memory, difficulty remembering words, and at times an inability to finish a sentence because I forget what I'm talking about half way through). This happens more frequently in the evening or when I'm tired but improves after I sleep. I can't really figure out why or how all the mental changes fit into anything. This weekend was awful. The provigil worked the 1st time I took it, and I felt great. But it hasn't done anything for me since. I'm having more and more myoclonic jerks and when I try to write or do even a mildly laborous task for more than 20 minutes my body just starts going nuts and muscle fasciculations (muscle twitching) start going off all over. So much so that my family can see the muscles of my thigh twitching through my jeans. All of this only has me more and more concerned for a MND.

If my neurologist doesn't help me tomorrow and if I can't get into another neurologist this week then I'm just going to go the emergency department. I hate to mis-use the ED if its not a true emergency but I need someone that can help me figure this out. Luckily I work for a rather large hospital, and I feel comfortable with the care their. I didn't utilize my hospitals neurology department to begin with because I had so many great referrals on my current neurologist. When I started seeing him years ago, the main concern was for multiple sclerosis and I chose him because he is a big MS guru. Only problem is I think being an MS guru limits him as well.

Thanks so much for everyones help. This is such a great group of people.

I'll let you know how things go

Kate

Hi Kate,
I know this is a pat answer and I don't mean for it to sound this way at all. But I think you may need a second opinion, or a fresh look from a neuro muscular specialist. Not all neuros are equal.
As far as Provigil goes, I'm on Provigil, and I've never had it make my MG worse, nor have I ever heard that it would, also it's a very good med for fatique, I highly recommend it. It is one of the safest drugs for alertness that's on the market today. Having said that, I need to also say that of course everyone reacts differently to meds. But I can tell you that my body is very sensitive to meds, and Provigil has been great, and has saved my life in many respects. Before it, I was napping two three times a day, now I'm down to napping three of four times a month. Big difference. My life before was constant naps, and sleepiness. (I'm also a narcoleptic)
I was told that MS may not show up on an MRI for 5 years after onset. So, it's possible that it hasn't showed up yet. But am hoping you don't have it.
My left side is weaker than my right, but not by too much. These symptoms your having can be so many different things, it's like all these diseases got together and said, "How can we really mess with their minds? Oh, I know, Lets produce simular symptoms" This is why, I thought, maybe you could get a fresh look from a Neuro-Muscular Specialist.
You may want to call your local MDA and ask for a list of doctors, and then go from there.

I know, I really hate saying "get another opinion, as I do know what a pain in the tush this is, but I really think you need to for the good of your health".
And Kate, I'm really sorry about the Graves diagnosis, that really stinks.
If you have any questions at all, feel free to ask.
Best of wishes in all this mess. I know your really burdened down with it, and it's not easy.
Much Love :hug:
Lizzie

Kate, my severe illness was way back when I was only 18 - I can see some minor symptoms that were there prior to the big onset at age 38, but this has progressed. Without something similar in your background I wouldn't suspect the viral aspect too much either, but the "benign lesion" made me wonder a lot. I remembered the name finally - it's post infectious recurring tranverse myelitis.

I hope you're not going to find an MND, but definitely keep us posted. I can't imagine either why your neuro wouldn't want to do an EMG on you, but as others have said I think a fresh look by a 2nd neuro is a good idea. I know when my symptoms started to progress kind of quickly and the neuro's were taking that casual approach to seeing me it about drove me crazy!

Lot's of luck to you!

Becky