Have you had the anti MuSK test? Different type of MG with different responses to meds.
Good luck

Erica, I feel and have felt the same way. Every time our dr's don't take the lead, it's so frustrating. FYI, I chose cellcept. There are fewer studies, but it seems less cancer reports too. Just my take. Hope today is better...
Be well,

Hi Erica,

I 'm sorry for all the craziness you are going thru. I have positive antibodies and had a thymoma, so my diagnosis isn't questioned. However, my SMFEMG was negative and I have never responded to mestinon. IVIG does help me greatly, but I have 3 days of infusions( do you only have 2? ) It usually takes 4-5 days to kick in. I would contact MGFA and find the best neuromuscular dr. in your area. Many of us have had to drive hours to find one and many of us go thru multiple neuro's

Are you on prednisone? As much as I hate it, it really helped with my breathing and double vision.
I am on cymbalta for anxiety and depression and it has really helped me. It also is supposed to help with aches and pains.
It must be so hard with little ones to take care of. I'm very lucky that my kids are old enough to be a great support for me.

Things will get better!

Judith

I was negative for anti MuSK also.... Negative for thymoma, too. Also every other blood test for the other things that cause diplopia and lagging eye muscles. My IVIG is 5 days long, totaling 2g/kg. I had three of them last week before the migraine complication. They cancelled my last two and just ended up moving them to Yesterday and today. I'm taking 120mg of mestinon 3x per day and extended release at night. Does everyone have immediate clearing of symptoms if the mestinon works? Mine seems to improve, but I'm not sure if its just my mind playing tricks on me. I need to pick between the cellcept and Imuran.... Imuran has been around longer. I wonder if that's why not as many cancer reports. The studies are also nit long enough in duration for either one to be sure. It is really difficult, as well, to tell if a drug contributed to cancer or if he person would have gone down that road either way.

Mestinon does not have a total clearing of symptoms for me. I still have the symptoms but they are much improved (well, depending on the severity of the symptom that moment, that hour, that day...it's all so variable on activity level, stress, weather, etc) The mestinon peaks for me at 45 min after dose. (60mg every 3 hours)

I also remembered that for a time in the hospital after crisis, my symptoms were worse in the mornings. Around 5pm, my eye would open and my speech cleared. They had no idea why. Now, I am back to being stronger in the mornings.

So glad the Dr isn't giving up on the idea that it is MG and is continuing to treat you.

About your IVIG migraines, catnap has them also. You might contact her to see what her pre and post medications are. Are they running the infusion at a slow rate! Drinking lots of water a few days before, during and a few days post?

Hugs
sherry

Have you been screened for Lyme's disease? Lupus??

erica,
It makes sense that the eyes might be the hardest thing to treat since small differences in muscle function would make large differences in ability to focus and coordinate. Most people seem to need prednisone to get it under control. Remember that Mestinon does not work if the receptors are not functional. I drown myself with fluids and have not had the migraines with IVIG, but my diplopia is worse afterwards--don't know why when everything else is better after a couple days.

I had a weird skin and joint reaction to IVIG that slowing the rate seems to have greatly mitigated. I am also seronegative, etc. It is all frustrating, and it greatly helps if the doctor is calm and decisive. Mine is 300 miles away, maybe that helps him! Since I have had symptoms of MG since I can remember (although only treated for two years) and am doing so much better than my father and aunt, that helps steady me, too--most of the time :-)
Hang in there, b.

It took me 13 years to get a diagnosis...and that only came from my own research (don't mean to sound arrogant here). Thank God and Google!!

I had been tested for CMV, EBV, Mono, and when I got in front of a world reknown Infectious Disease Physician (took me 5 months to see him for less than 10 minutes), he looked at me and told me I had Bipolar Disorder.

From there, I had a couple of Psychologists more or less tell me I was a malingerer.

I was hospitalized (twice) for the anxiety and depression and tried the full gambit of antidepressants...everything from Desipramine and Amitriptyline to Wellbutrin, the SSRI's and the SNRI's. I was offered, in fact encouraged, to have ECT in the hospital...the second time around.

That afternoon, I signed myself out AMA and went home in a terrible mess. I toughed it out and had to pay a hefty hospital bill because my insurance would not cover a large part of it. That was in 1994 and I finally paid it all off about 8 years later.

It was awful, to say the least.

I started back at square one. I went through 4 more years of having being poked, prodded, stuck, scanned...everyone guessed around it.

I kept gaining weight and I noticed a thickening of my breast tissue...then, one day, I had this discharge from my breast...I was lactating. I went to my doctor with that and, of course, it was blamed on the Risperidone I was taking. I got off that, which was making me sick anyway, and the lactating stopped...case closed, huh?

No, about 5 months later...the milk is flowing yet again. They took me off all medications and...it stopped...for a while...then, finally, I had enough other symptoms (E.D.) and they sent me to a Urologist.

Well, I was given Viagra, then Cialis, then Levitra...and the curse continued.

I researched my problems, the week between Christmas and New Years (my boss was out of town and I had time on my hands) and I went to my PCP and asked for a Prolactin test. He wouldn't give me the inexpensive test...he gave me the $450 free testosterone test.

Well, it was off. THEN I got the Prolactin test...and it was high. Duh...and then I got the MRI...and there it was...a tumor the size of a #2 pencil eraser in my Pituitary gland...had been there for Years...as if I didn't know!!!

Doctors may be well intentioned but they almost always play to their specialty...except in Psychiatry...because everyone from an O.D, an OBGYN, or a good ole Country Doctor can prescribe antidepressants within a certain formulary.

There is nothing better than being your own Researcher and Advocate...and never, never take a Doctor's word as the full gospel.

Sorry for the long time on the Soapbox.

I am seronegative with a negative SFEMG and a questionable REPSTIM. My response to Mestinon and steroids was and is so profound that the one thing of which I am unfortunately confident is that I have MG. In fact, I went in initially telling my PCP that I had MG, which my ob/gyn already believed to be true. My own neuro, despite his over attachment to data that he obtains on his own time schedule for a fluctuating disease, has treated me. It is a constant thing we face: trying to make our symptoms fit into their outlook calendars. Absurd and ridiculous. Do you feel confident in the MG diagnosis? If so, do not let a neuro lead you down time consuming paths that may find you sicker. If not, well, then, you'll have to be patient. My symptoms that are more MS like do not fluctuate throughout the day, but the fatigue and sleepiness I deal with gets progressively worse as the day progresses. Of course, there are times when I have all the symptoms, and it can be very difficult to sort them out. My neurologist unnerves me then when he starts second guessing himself, because the one thing for certain is that I could NOT go a day without Mestinon. I hope you aren't dealing with more than one thing and that it is just your neuro's lack of confidence getting in the way of things. Remember, we can get retested, too. :-) Hope you get answers soon! Hug.

When I was in the hospital in April the neuro group says the eyes are hardest to treat, and for me that is true.
Annette

Hi, Erica!

I am sorry for your distress and hope your Neuro can get everything sorted out!!! I can definitely empathize with what you are going through!!!

I am seronegative and MUSK negative. I had an unequivocally abnormal Stimulated SFEMG by a SFEMG expert (resulting in MG dx in 10/2012) and, later, a normal Volitional SFEMG by a Neurology fellow (calling my dx into question in 7/2013).

I never experienced the Mestinon Magic other people here report and eventually went off of it because of the gas it gave me was more bothersome than any help Mestinon (150mg 4x/day) was providing.

I was also started on Imuran in 1/2012, but was taken off it in 6/2013. It turned out that I was a carrier for a TPMT genetic defect which caused me to metabolize Imuran slowly and my white count had plummeted to 2.9. It is my understanding that I should have been tested for TPMT genetic defects before I was put on Imuran... something potentially important for you to consider if you and your Neuro are considering Imuran.

Since my diagnosis is now in question, I am not receiving any treatment for MG. I will be having MRI and MRA to look at my brain (and heart?) and will be seeing a Neuro-opthalmologist to check out my eyes.

In the meantime, I am struggling to manage anxiety over being back in Limbo again. Lexapro has helped me a lot with chronic mild depression and anxiety.

I am also receiving weekly IV infusions of Alpha Lipoic Acid (for support on the cellular level), nutritional help with optimizing my diet and nutrient intake, and regular medical acupuncture performed by an MD internist. All of this is to help my body function as well as possible, with the ultimate hope of reducing/minimizing my need for medications.

I believe that I have had mild MG for over 50 years, much like b's history.

I hope you feel less alone, Erica, hearing other people's stories. I am in Boston, if you are ever down this way!!

'Holding you in the light!
Rosie

Ooops... I started Imuran in 1/2013, and was on it for less than six months when it was discontinued. I did feel like it helped a lot, incrementally, over time. And it has been sad to feel like I have been losing hard won gains without the Imuran.

XOXO Rosie

Kathie I would say bweeds is correct, getting control of MG without a form of immune suppression would most likely be difficult.

I am fairly new to this as well but did have the advantage of already taking Imuran at a lower dose to help control my Crohns. I did find that with the IVIG and increased dosage of Imuran that the Mestinon was more effective.

Overall for most of my symptoms I find that the Mestinon is about 80% effective, the eyes do seem to be the hardest to treat though. My neurologist did mention the eye muscles never rest, even when we are asleep and as such they can be a far more problematic and stubborn symptom to resolve.

I hope the rest of the IVIG treatments go well and that you feel better soon.

Joe

PS (I forgot to say that I take Imuran. I think it helps to take a steroid and an immunosuppressant. There would be no life for me without my steroids. Of this I am sure.)

O Erica I am so sorry to hear you sounding so down! Before my diagnosis I too was faced with several neuros who kept missing the diagnosis because I didn't fall into that textbook category of MG ( not that anyone ever really does). First I was told my reflexes were too brisk then my weakness was asymmetrical and yes I too was and am still weakest in the early morning. When I finally found a neuro who did her Phd under Prof Newsom-Davids in Oxford, one of the top experts in MG, she was sure of my diagnosis within an hour. I am hoping that this neuro you are getting a second opinion from is one who deals with MG because I think that is definitely what you need. If it's any consolation, the mestinon certainly has never completely reversed my symptoms and when I am very unwell it doesn't have any effect at all. Like B says if your receptors are already blocked or broken down from being bombarded by antibodies then irrespective of how much you increase the acetylcholine in the NMJ you will still get no response. When I am stronger and start to recover the mestinon typically starts to work. So the fact that it isn't reversing your symptoms certainly doesn't count out a diagnosis of MG. Also the whole early morning weakness thing puzzled me for a long time and I spent alot of time thinking why this could be. I think it happens when I don't wake up to take mestinon. Suboptimal respiration during sleep I think may also make those early mornings hard for me. I usually start feeling better at around 10 or 11 and then have a slump again later in the day. Have you noticed a slump later in the day as well? This period before definitive diagnosis is really tough. Most of us have gone through it and really feel for you. I will be praying that your second opinion helps get you some answers that make sense. Until then hang in there and know that we are all here rooting for you! Hugs Ange