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?

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!

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