In need of help!
 

I’ll try to summarize as briefly as I can. 2003 was the first onset of symptoms in which I had left blurred vision, left hand paresthesias, left arm weakness, and left foot paresthesias. During that episode I had an extensive work up for MS but my MRIs and LP were all clear. After about 4 months all the symptoms started to slowly settle down and fully disappeared by 6 months. Then in 2007 I developed a flare of the same symptoms again. This time I was treated with a higher dose of oral steroids which I responded well to and the episode promptly went away within a few weeks. Sine February of 2009 though I’ve been dealing with all the symptoms again (plus some). In march my neuro felt that I had graves disease because my left eye was bulging forward (however he ignored that I was having trouble keeping my right eyelid open). Antibodies and a thyroid scan came back positive for graves disease but when I went back for my follow-up my eye wasn’t protruding so he changed his mind on the diagnosis. At my request my primary MD ran acetylcholine antibodies (my neuro did not agree with me on my concern for myasthenia). The modulating came back positive at 29 but the blocking and binding were negative. Both my primary and neuro interpreted the labs as negative for MG (is this right?). Since then my symptoms have continued to progress over the last few months. My neuro had presumed an autoimmune induced encephalopathy and started me on high dose steroid infusions with an oral prednisone taper starting at 100mg. The IV steroids had an amazing effect but this was short lived and only lasted a few days. Now all my symptoms are back and then some (mental confusion, scattered paresthesias, weakness on the left side especially in my cheek and forearm and hand (oh by the way I‘m left handed) muscle aches in my neck chest and shoulder, intermittent double vision in my left eye, generalized blurred vision, and extreme fatigue requiring daily naps). This week my neuro changed his mind again and now says my “dopamine levels must be low” he didn’t bother to order an EMG or anything that I would have expected him to do. Instead he prescribed Wellbutrin and Provigil med trials. I’m waiting for an appointment for a 2nd opinion but in the meantime I was wondering if any of you had any thoughts. Thanks so much for your time.

Hi, Kate. Welcome! I'm sorry you are going through diagnostic hell.

I'm not one to mince words, especially when someone has not gotten good care. And, oh boy, do I have "thoughts."

First, MG is all about weakness upon exertion that gets better with rest, cold, Mestinon, Tensilon and other MG drugs.

Throwing drugs at symptoms is not good medicine. Drugs are not benign and could cause even more problems. Provigil, for example, does help with some MG fatigue but can also make MG worse. Why the heck they are giving you Wellbutrin is beyond me. Are you depressed? If not, why did they give you an antidepressant? Depression does not cause antibodies to be positive (which your antibodies were, by the way) or ptosis or generalized weakness.

Paresthesias are not caused by MG. They can be caused by the Graves you had, B12 deficiency and LOTS of other causes including electrolyte imbalance. Did they check your B12?

3 - 4% of patients with MG only have modulating antibodies. I am one of those patients. Having an IgG subclass deficiency (i.e., IgG3) can also cause MG antibodies to not look positive. If you are on steroids or if a doctor runs the antibodies while you are on steroids or shortly thereafter, the antibodies will more than likely be negative. The job of steroids is to get rid of the autoimmune process and make the antibodies go away. Duh! So if your docs ran that while you were on steroids, the test is not accurate anyway and should be redone.

You can see a neuro-ophthalmologist to have them evaluated any eyelid droop, aka ptosis (toe-sis). They can determine with their tools if you have fatigable ptosis, a hallmark of MG. Does your blurry/double vision go away when you close one eye? If so, that is binocular vision and that is indicative of MG too (it can be caused by other things though). Does it get worse when you do an "upward gaze?" MG gets worse upon exertion.

You can see a pulmonologist, who can do very specific breathing tests like MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) that show neuromuscular weakness. This is a very good idea because they can track progress of MG and can compare baseline readings to when you may get worse. Breathing muscles/chest wall muscles get weak in MG.

You can find a GOOD neurologist who is an MG expert AND nice. An MG expert will understand that Acetylcholine Modulating antibodies are positive in 3-4% of MG patients and are very specific to MG. People just don't make antibodies for no reason!!! ;) And you have Graves, which quite a few people with MG have. Some people tend to get more than one autoimmune disease in their life. I have MG and celiac disease, for example.

The book "Neuromuscular Junction Disorders: Diagnosis and Treatment" by Meriggioli, Howard and Harper is a very good book. You will find that antibody info in it.

If you have MG, you need to be very careful of getting hot, either by going out in hot weather or getting an infection, etc. Heat makes MG much worse.

If your breathing is getting worse, you absolutely need to have someone see you immediately. Breathing in MG can get rapidly worse and only a doctor and doing pulmonary function tests, arterial blood gases and oxygen saturation tests can tell if you are in trouble.

You need to be very careful with steroids for two reasons. One, MG can temporarily get worse when you first start taking them. Two, if you get "hooked" on them, they cause LOTS of side effects like secondary diabetes, bone demineralization, infections, glaucoma, etc. And if you go off of steroids too quickly, you can have an adrenal crisis, which is life threatening!! Some doctors do NOT understand how to give steroids well. For example, like doing every other day to keep your adrenal glands working. When you are given long term steroids, your adrenal glands tend to just sit back and not work. Why should they have to since artificial steroids are doing their job?!

If you want more information, go to www.myasthenia.org or www.mdausa.org

My instincts about your care is that it has not been good. Throwing drugs at someone and dismissing very real test results is dangerous, especially when you possibly have a disease like MG that can kill someone if it is not treated properly!!! I'm not saying that to scare you. Most people do okay having MG. But if it is untreated, muscle weakness can get so severe that you can stop breathing.

So, get yourself some new doctors, have tests redone, get someone who does other MG tests like a repetitive nerve stimulation test or Single Fiber EMG. You need an "official" diagnosis before having meds. And, please, before you even consider taking meds, read ALL of the prescribing info for them first! Some meds are contraindicated in MG and some meds shouldn't be taken together. Or with certain foods.

I hope you will get some good care soon. I know how frustrating this diagnostic process is. And, meanwhile, your life is put on hold! ;)

Annie

Annie,

Thanks for your time and advise. To answer your questions, I'm not depressed. I'm just extremely worn down lately so my affect is a little flat. I think my neuro may be percieving my flat affect as being depressed even though I have made it a point to tell him I'm not depressed. His idea for the wellbutrin was again to increase my dopamine levels to boost my energy levels. Up until now I had not had any problems with this neurologist because he is known for thinking outside the box and trying new things. His latest thoughts however I'm having a hard time swallowing. I'm a little mad that when I went to him on tuesday with numerous concerns (ie increasing weakness on my left side) he didn't even do any sort of exam (his assistant looked at my pupils but that was it). Thanks again for your input. I've just been feeling rather uneasy this week about where to go next. On a good note my primary is not impressed with my neurologist at all and is working diligently to get me into another neurologist for a 2nd opinion.

If you want to increase your dopamine, drink some coffee! Did you know it does that? ;)

One sided weakness?
 

Hi Kate and welcome. I'm sorry to hear you're having to get on the neuro merry go round! It's so frustrating, but Annie has given you some wonderful information!

One thing I'm wondering, Annie, is about the one sided weakness. That doesn't fit real well with my understanding and experience of MG if it's a really pronounced, obvious difference, does it?

Kate, two things I've learned on my merry go round trip is that 1) some neuros love to jump to depression if they can't find the solution elsewhere, and 2) there are SO many different conditions that can cause the same symptoms that you really have to find a GOOD, knowledgeable and dedicated neuro.

You mentioned the search for MS, which I have been going through for years! The way yours has come back and much of what you're saying about your symptoms sound eerily familiar to me. I was clued in to the possibility of the shingles or another of the "herpes" family going into the central nervous system, and when my GP put me on anti-virals for a rash I had, it made such a difference in how I feel! Have you ever had a high fever illness that defied diagnosis, or had shingles? MIne is actually the cold sore virus, but a blood test can show if you have the antibodies for the Herpes family - there are several of them. At some levels, they just demonstrate that you have had the virus, but at very elevated levels it demonstrates that the virus is active.

Just a thought - it's such a easy, fairly safe treatment too, if that's what it turns out to be. I'm getting ready to have a spinal tap to check for all the viruses in the CNS next month and will post the results when I get them.

Good luck to you. I hope you get enough information from all us here to help you find an answer relatively quickly, although you have already been dealing with this for too long!

Feel free to PM me with any questions you may have on my illness if you like. I have to warn you that I am back to work full time and don't make it on to the forum nearly as much as I like (that's why the PM may be best if you have any question for me), but I will check in as often as possible.

Big hugs to you!:grouphug:

Hi, Becky. Where you been?! ;)

Actually, some people with MG do have one side weaker than the other. I know most people think of things like MS or strokes when they think of that. I used to.

Have you ever noticed how you use one side of the body more than the other? I drive with my left more than my right but I'm right-handed and use that more. The right arm always gets weaker. My right eyelid is the dominant droopy one but they both droop. And I think it depends upon when a neuro examines you!

Kate, have you ever had a brain MRI? I'm glad you like the neuro but even doctors we like can do not so great stuff or have weird thoughts about things. And I wonder if he was just tired of doing neuro exams on patients that day! I know, that's not a good excuse. He should have done an exam, especially with new symptoms.

If you are having a hard time swallowing (just caught that in your post), then try sipping on ice water in between bites of food. Try putting a cold washcloth on your neck (not too cold) to help those muscles. People who talk a lot have more trouble with the voice/neck muscles.

Annie

Kate, welcome to the best site for support. I too have the same symptoms as you, weaker on the left side, neck control problems, many signs of MS but don't have MS. I have had MG over 20 years and was treated by the guru of MG in NYC many years ago. So I know I have it. When I was DXed with MG it was believed that pain, one sided weakness, foggy brain, none of it was related to MG, but I see a lot has been learned over the last 20 years. A new Dr. is definitely needed for you. Good luck and keep us posted. Oh and Annie always give the greatest advice.

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

i was only recently diagnosed in spite of all neg tests. but the neuro opthma and reg neuro are 100 % POSITIVE BASED ON RESPONSE TO MESTINON AND SOME STEROIDS. A CLOSE FRIEND ASKED IF I WAS ALSO GETTING DEPRESSED WITH IT . I DO SEE PSYCH FOR pain MANAg. FOR CHRONIC GI ISSUE FOR 20 YRS NOW. I ASKED HIM ABOUT IT ,WE TALKED ,DID QUICK SCREENING AND WE BOTH WROTE WHAT WE THOUGHT ISSUE IS. I DEFINITly like to be in control,want to fix whatever[motherly instinct] and am frustrated over the variability of this disease. we laughed becuz we both wrote the same thing. sorry about the capitals but it's 5pm and i'm too tired to fix it. have a great w/e!!!:Wave-Hello:

Hi Kate,

I just want to welcome you to the group! As you can see from all the responses, you've come to the right place. I'm glad your GP is working on getting you another neuro...I really think you need a new one. Let us know how things are going. We'll be keeping good thoughts. Take care.;)

Hugs,
Pat

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!
 

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.

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

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