Need ASAP advice- please help- clearly MG
 

I am new. I will make this brief b/c at this point, I can barely breathe.

Long story short, I am 45 female. I believe 99.9% that I have had undiagnosed MG for the past 15 years and don't know what to do.

15 yrs ago I had bizarre head/eye/headaches/parasthesias/chest pain and trouble breathing that came and went. but very severe so they took bone marrow from me. Nothing found except a polyclonal IgM in my blood and a bone marrow deletion showing a lymphoproliferative disease or plasma cell disease. Drs could not explain. Told me to forget it. I was a postpartum everyone chalked it up to depression.

I have had various neuro symptoms on and off for the past decade. At some point, one dr. told me my Lyme was positive and that was probably it. THe Lyme has been doubted by other drs. Positive AnA starts showing up. But low.

Fast forward. August 2013. Eye tugging sensations like someone pulling at my eyes. Terrible cranial nerve headache issues like nothing I ever felt before - unresponsive to any meds. Stress. Maybe. But it lasted for 3 months. THen it was followed by these episodes of "stiffening" where I would feel dizzy and my neck would stiffen up and I would get these terrible occipital pains, with jaw pains, teeth pains and ear symptoms - pressure rushes, I would call them.

Then around Christmas I started getting muscle spasms all over my body and twitches. I felt like my muscles in my arms, shoulders and neck were all burning with lactic acid. Had CT scan. Lungs showed "FOCAL CALCIFIED MEDIASTINAL LYMPH NODES."

I have horrible horrible throat and tongue pain and my facial muscles are weakening when I drink, I slurp. LIke someone is pulling my tongue out. My throat is always sore. Ears ringing/pain, terrible. My mouth burns and my tongue and face go numb. My eyes burn like hell. So do my sinuses. My occipital pressure coming back. "Stiffening episodes" in my head increasing. My right arm starting to feel "weird." For the past 9 months I have wanted to lop my head off.

I am an athlete. This week, I started feeling EXTREMELY TIRED after workouts and not capable. Chest pressure. First time I can't complete a workout. Something iS WRONG.

I have seen several neuros b/c worried about MS or ALS and had very full workups. Most say small fiber neuropathy, but something is missing. They did 2 EMGs. Normal. One said to come back in 3 months if not improved we will do biopsy for small fiber neuropathy. IN the meanwhile my family wanted me to go on SSRIs and Klonopin for muscle relaxant and mood issues. They felt that nothing was showing in the medical workup so must be in my head. Psych dr can't figure out why things getting WORSE on meds for 3 months.

I have had the million dollar workout but no one is tying the pieces together. Just had neck CT which shows "EXTRA THYMIC TISSUE APPEARS BENIGN."

Help! This all clicked with me today -the AnA, the mediastinal lymph nodes, the thymic tissue, the stiffening and craniobulbar symptoms, the burning muscles-

Is it possible ALL ALONG for 15 yrs I had MG and never knew it? If thats the case, its an answer - I have been terrified for the last 9 months. Now I am more terrified its Thymoma cancer or lambert eaton syndrome-- does it sound like either, help!!

So scared in NJ but I feel like this coming together on Easter Sunday is a sign from God, please help. WHo do I call??? Primary care dr, neuro, ER etc.

Welcome --- I am so sorry for what you have been and are going through! I can't answer much, but I can say that I don't actually experience pain with my MG. It's more like a heavy, slow response, and sometimes actual weakness. (Like when you rake leaves until you just can't hold the rake anymore....except without the raking part!!)

My eyelids will get heavy and 'fall' down sort of hooding my pupils. The corners of my mouth droop in a rather constant frowny face.

But I can't say there is pain (and I do understand pain like migraines and broken bones and even severe sinus infections).

Others will share their thoughts and experiences and may have more insight and help to offer. I do hope you find the answer(s) soon.

Thank you for sharing. Your history is very interesting, and there are some similarities with my symptoms over the past 15 years. I am just now putting my own puzzle together. I am also wondering if I have actually been suffering from generalized MG for a lot longer than I had originally thought.

For me, going on Pyridostigmine Bromide (Mestinon) 3 months ago has changed my Life! It helps with my arm and ankle weakness, my generalized fatigue, and the best part for me is that it helps with my ptosis, double vision and crossed eye! :-)

Hi, Pyr2. Welcome!

Have you seen a rheumatologist, or has it only been neurologists? If not, I highly recommend that.

With inflammatory disorders, there is pain involvement, as you have. A good rheumy will take another look at the Lymes and IgM.

http://www.mayomedicallaboratories.c...erpretive/8158

Until you figure this out, you need to reduce your workouts! If you have MG, you can go into what's called a myasthenic crisis. It sounds like you are having serious issues breathing right now. If you can't breathe well, no matter what the cause, that is an EMERGENCY. You need to go to an ER.

Tell the ER doctor that you suspect something like MG, due to how weak you are. Don't tell them what they "should" do, but this is what ER docs should do if they suspect MG. They should do a walking oximetry (that thing they put on your finger to check O2 saturation). They should do a pulmonary function test. They can do an Ice Pack test. If you have ptosis, they can put it on your eyelids to see if ice improves it. Sometimes they'll do an arterial blood gas, if your breathing is bad. They can also consult with neurology, but don't count on it.

A pulmonologist would be very helpful in evaluating what kind of breathing issue you have and what the possible causes are. MG patients need the basic pulmonary function tests (PFTs), plus MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure).

Do you have ptosis (eyelid drooping)? Take a photo of your face when you wake up, and then another later in the day. Look for any drooping of eyelids or eyebrows.

Have you had your vitamin B12 checked? Vitamin D? If so, what were the numbers?

A muscle relaxant would make MG worse!

Did they even do the acetylcholine receptor antibody tests (binding, modulating) or the MuSK antibody test for MG? What about the striated antibody test?

I don't know any MG specialists in your area. Any doctor can run the MG antibody tests, however. Do you like your primary doctor? If you can see them right away, ask them to do some of these basic tests (like B12 and thyroid). If you call first thing, they can usually get you in right away.

Someone needs to check your O2/oxygen saturation.

Does any weakness get worse the more you do? Sounds like it. Fatigable muscle weakness is the hallmark of MG.

I think the most important thing is to get to a doctor, or the ER. Please let us know how you're doing! I really hope someone can take the bull by the horns here and help you!

If you do have MG, heat will make it much worse. Don't push yourself until you figure out what is going on!!!

Annie

Welcome and sorry you have to be here! The worst thing for MG is physical or emotional stress. I know how going through the rounds and rounds of specialist with all the possible different diseases is frustrating and frightening. You need to find some way to de-stress so you don't make the situation, especially if it is MG, worse.

As Annie said, the hallmark of MG is fatigue. Are you better in the morning than at night? Are you better after you rest or sleep? Are you worse in the heat?

Due to your thymus results, I would ask for ACHR and Musk antibody test. You said your ANA is positive. Did they do a C reactive protein and sed rate?

I am double sero-negative MG diagnosed by single fiber EMG. I also have another autoimmune disease. I have a lot of pain, but I think that is due to the other autoimmune disease, probably Lupus. MGers do not usually have elevated crp or sed rate, but you may have more than 1 thing going on. MGers often have more than 1 autoimmume disease. Thyroid problems, Vit D and B12 defiencies are also common. Ask for thyroid test and test for Vit D and B12.

I would suggest going to a neuromuscular specialist at a large teaching hospital where they have more experience with rare diseases like MG. Many local neuro have never even had a patient with MG.

Good Luck and let us know how you make out,
kathie