Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hey Guys,
I am new here, but I have been struggling with a host of issues since November. It started out that I was losing all muscle strength in my hands, this progressed to my arms and legs and eventually swallowing. I have been passed around from a Rheumatologist to a Neurologist, then to a Neuromuscular disease specialist. They suspect I have myasthenia gravis but we have no diagnostic evidence of it. I have been sent for the antibody tests and they have been negative so far. I was sent for an MRI to see if there could be a central cause of the muscle weakness, where they found a lesion in my pituitary. They have tested all my hormones and they believe the lesion is just a Rathke Cyst and is fine where it is.
My neurologist has also sent me to a neuro-ophthalmologist and to an internist. The neuro-ophthalmologist has noticed a cogan eye twitch in my most droopy eyelid. The internist however says I meet the criteria for Chronic Fatigue Syndrome. I have found mestinon to be a huge help, however I have interstitial cystitis and it really bothers my bladder. I got to a point where I was unable to swallow solid food and my breathing was getting difficult. So at that point I was given a round of prednisone and it helped immensely. However all of my symptoms started to return again when I dropped from 20mg to 15mg.
My neurologist is now at a loss. She says I have a host of symptoms and I dont really fit into either the MG box or the CFS box. So she is hesitant to give me a label if it might be the wrong one. She is also hesitant to put me on steroid staving agents or anything as it is a long term commitment with a host of bad side effects. The breathing problems have now started to come back, I wound up going to the ER on Saturday. The doctor there seemed to think it was just anxiety; only after being there for 5 hours with no change did he start to believe me. He then just offered to put me back on prednisone, but I am hesitant to do that without discussing with my neurologist. It seems my neuro is just waiting for me to get bad enough I can be diagnosed with something. She wants me to see a pulmonologist but I cant get in there until Aug. 5. I am also awaiting the results of a repeat MUSK antibody test (I am sensing it was negative though as it was over a week ago and have not heard)
Here are all of my current symptoms:
- Muscle Weakness
- Muscle Fatigue
- Eyelid Droop w/ Cogan eyelid twitch
- Hands are shaky
- Fingers feel swollen, as if in hot weather, and feel difficult to move (this goes away with the Mestinon)
- Numb fingertips (Also with pain, feels like rug burn)
- Can't swallow properly, choking on food
- Constipation (must take PEG everyday)
- Muscle ache with the slightest exercise
- Thinning hair on head, extra hair on face
- Vertigo
- Sensitivity to sound, particularly in the mornings
- Sore wrists
- Patellar Femoral Sydrome (Knee Pain and clicking) (This went away while on prednisone, my only explanation is that while on it my muscles were stronger allowing my knee cap to track properly, when I go off, it slowly weakens and comes back)
- Lower back pain
- Brain fog/terrible memory
- Constant headache (pressure and paid behind my nose and eyes and then squishing feeling behind my ears)
- Chest feels heavy at rest, and very out of breathe with slightest activity
Have any of you guys been through this same thing? I am soo frustrated. It has also started to tear apart my relationship. My boyfriend is getting worn out and feels more like a caregiver than a boyfriend. So I have been trying to do it all on my own, but I gotta admit, just getting through the day is tough. I pretty much go to work, and if I can get home and manage to get food in me before I go to sleep, I consider it a success.
I am new here, but I have been struggling with a host of issues since November. It started out that I was losing all muscle strength in my hands, this progressed to my arms and legs and eventually swallowing. I have been passed around from a Rheumatologist to a Neurologist, then to a Neuromuscular disease specialist. They suspect I have myasthenia gravis but we have no diagnostic evidence of it. I have been sent for the antibody tests and they have been negative so far. I was sent for an MRI to see if there could be a central cause of the muscle weakness, where they found a lesion in my pituitary. They have tested all my hormones and they believe the lesion is just a Rathke Cyst and is fine where it is.
My neurologist has also sent me to a neuro-ophthalmologist and to an internist. The neuro-ophthalmologist has noticed a cogan eye twitch in my most droopy eyelid. The internist however says I meet the criteria for Chronic Fatigue Syndrome. I have found mestinon to be a huge help, however I have interstitial cystitis and it really bothers my bladder. I got to a point where I was unable to swallow solid food and my breathing was getting difficult. So at that point I was given a round of prednisone and it helped immensely. However all of my symptoms started to return again when I dropped from 20mg to 15mg.
My neurologist is now at a loss. She says I have a host of symptoms and I dont really fit into either the MG box or the CFS box. So she is hesitant to give me a label if it might be the wrong one. She is also hesitant to put me on steroid staving agents or anything as it is a long term commitment with a host of bad side effects. The breathing problems have now started to come back, I wound up going to the ER on Saturday. The doctor there seemed to think it was just anxiety; only after being there for 5 hours with no change did he start to believe me. He then just offered to put me back on prednisone, but I am hesitant to do that without discussing with my neurologist. It seems my neuro is just waiting for me to get bad enough I can be diagnosed with something. She wants me to see a pulmonologist but I cant get in there until Aug. 5. I am also awaiting the results of a repeat MUSK antibody test (I am sensing it was negative though as it was over a week ago and have not heard)
Here are all of my current symptoms:
- Muscle Weakness
- Muscle Fatigue
- Eyelid Droop w/ Cogan eyelid twitch
- Hands are shaky
- Fingers feel swollen, as if in hot weather, and feel difficult to move (this goes away with the Mestinon)
- Numb fingertips (Also with pain, feels like rug burn)
- Can't swallow properly, choking on food
- Constipation (must take PEG everyday)
- Muscle ache with the slightest exercise
- Thinning hair on head, extra hair on face
- Vertigo
- Sensitivity to sound, particularly in the mornings
- Sore wrists
- Patellar Femoral Sydrome (Knee Pain and clicking) (This went away while on prednisone, my only explanation is that while on it my muscles were stronger allowing my knee cap to track properly, when I go off, it slowly weakens and comes back)
- Lower back pain
- Brain fog/terrible memory
- Constant headache (pressure and paid behind my nose and eyes and then squishing feeling behind my ears)
- Chest feels heavy at rest, and very out of breathe with slightest activity
Have any of you guys been through this same thing? I am soo frustrated. It has also started to tear apart my relationship. My boyfriend is getting worn out and feels more like a caregiver than a boyfriend. So I have been trying to do it all on my own, but I gotta admit, just getting through the day is tough. I pretty much go to work, and if I can get home and manage to get food in me before I go to sleep, I consider it a success.
I have been to the ER several times now at various hospitals in the area. Each time I tell them that they suspect MG. Each time they say it is outside of the scope of an ER doctor and that I need to contact my neurologist. They basically say I still have 100% oxygenation of my blood and therefore it is safe for me to go home. I was really upset on Saturday as my neurologist said I should go to the ER if I felt short of breathe. I did too much the day before and that day and could no longer get a sentence out without having to stop to breathe. She said that while she knows they seldom do much, they would at least test my breathing and get a baseline. So I went to the ER, he did some blood tests, a chest Xray, tried to convince me to take ativan and then sent me on my way advising me to start prednisone.
I am a bit frustrated at my Neuro lately. She doesn't seem to believe that it is MG and that the prednisone helps. Despite me and my boyfriend explaining that it really does. I have explained some days I crawl up the stairs or my bf carries me as I have no strength and/or don't feel safe on the stairs, as I can't be sure how high I will be able to lift my leg. She said that this is not typical of myasthenia. She also doesn't want me on it it seems because of the side effects long term. Last time I was there she offered to give me another trial if I wanted to, in the hopes that I taper off of it I will be OK.
Sadly she seems like the only one I can go to as she is the Head of the Neuro Muscular Disease Unit. So even if I wanted to switch I can't really as the new one would be on the same team and in the same office as her and wouldn't likely take me on as a patient.
At this point I don't even feel like I should call her to tell her my breathing is getting worse as I feel she will just tell me it is nothing :(
I am so sorry you have to go through this.
I understand your symptoms. If she said she would give you prednisone I would highly advise you take the 20 till you get this figured out.
There are just too many people in hospitals etc that have trouble understanding.
Sure we can have long term effects but not breathing can really be worse.
Maybe the 20 would keep you from getting worse.
My local neuro was highly recommended but he made too many life threatening mistakes with me.
I go to university of michigan now and I am very happy.
I was on 60 of prednisone for about 6 months to a year. That was 4 years ago. My cellcept took about a year to help and now I am down to 6 of prednisone. We have constant challenges. My diet has been changed. I eat no gluten. I know all my spellings may be off but I feel a bit lazy....haha
I would love to start prednisone, but I also worry it will delay a diagnosis. I know it is silly, but I just want to know what it is and get the label, so people will stop questioning me and will start helping me. I would also love to get my bladder fixed as it drives me crazy. Haha no one seems to care that some days I have to get up like 5 times a night, which means not soo much sleep, which makes the MG symptoms worse.... But they won't fix it until I get diagnosed. At this point my dentist won't even do a filling out of fear. Haha I am the one no one wants to help or touch until it is sorted out. So I feel in a way like if I take the drugs and feel better, I will never get an answer :S
I am sure soon some friends here who have tests results that are negative also
Sorry you are suffering.
D
First I was DX clinically by my neuro and my GP kept wanting a firm DX and put a little pressure on my neuro. So I went to a Univ. Hospital and I barely got a DX from an SFEMG.
If your neuro is waiting for you to go into crisis before he/she gives you a DX, I think I would find another opinion.
Good Luck. Welcome to the Group. HUG!
MG doesn't cause pain but the use of your muscles can. I have been diagnosed with Fibromyalgia and MG. Your symptoms are very similar to mine. I think some of your symptoms are more consistent with Fibromyalgia than CFS. Have you seen a rheumatologist before? There is medication to treat Fibromyalgia and it's working very well for me but I'm very new to it.
It sounds like your Neuro is looking for a single diagnosis as the cause of all of your symptoms instead of looking at the whole picture.
Seronegative patients are diagnosed based on their clinical symptoms. The basic criteria for a diagnosis is your history of symptoms, response to mestinon (those without MG do not respond to this medication), response prednisone or other immune suppressant medications.
I also have constant headaches but we've established that the vast majority of them are due to neck weakness and strained vision (double or blurry vision) Brain fog is common with both MG and FMA/CFS. FMA and CFS are often coupled together as one diagnosis but there are specific points of pain (a total of 18, I think). You might want to do a little research in that area to see if your symptoms are consistent with that.
So as far as I can tell, you have the "classic MG" symptoms of ptosis (droopy eye lid), muscle weakness/fatigue, shortness of breath, brain fog, swallowing/choking issues, symptoms worse in heat or later in the day, shaky hands AND you respond well to both Mestinon and Prednisone.
Most people with MG have multiple diagnosis and in many cases, multiple autoimmune diagnoses. I wish that you could take the mestinon but I understand that it can be difficult with the IC.
**more information**
Autoimmune Interstitial Cystitis:
A bladder inflammation caused by an autoimmune disorder such as fibromyalgia, scleroderms or lupus.
This means that many of your medical issues may be helped by the use of prednisone. I would suggest that you see a rheumatologist to see what other issues may be occurring at the same time. If you can rule in other diagnosis that explain the symptoms that don't fit with MG then your doctor might be more supportive of the MG diagnosis. It's just a thought.
I hope some of this helps and that you find a diagnosis or two soon. Best of luck to you. BIG HUGS!
Angie
Barbel, some of my EMGs have shown slight downward trends, but it was put off to technical error, others have been completely normal. My SFEMG (the one with the needle where you must tighten your muscle just enough to get the popcorn sound?) have always been normal. It is frustrating as I think at times that the repetitive stimulation isn't long enough to tire the muscles. Also, they like to do them in the morning in a freezing cold room. I can't help but think they might get a different result if they tested me at like 9pm in a warm place....
limpnoodle, the interesting thing is my neuro threw out the prednisone and IVIG options quite early on, but has now since rescinded them. It is like she believed me at the beginning and is now just giving up and thinking that it is CFS or something. I don't think I have been tested for LEMS. I am guessing there is an antibody test for that? I see my internist today, perhaps I will see if I can get her to send me for it....
ahpotts72, I know right! I totally agree, my neuro seems to be trying to fit me into one box, instead of thinking of overlapping issues. I think I kinda fit a combo of CFS and MG. I don't really have much pain besides the patellar femoral syndrome in my knee from the weakness, and muscle aches from when I push myself too much. I have actually been to a rheumatologist, that is where I was sent first, as I had this weird blisters on my fingers and I had a high ANA test. The rheumatologist however said that while they could not rule out it being rheumatological, they could not rule it in either. He was then soo concerned about my lack of hand strength he had be sent to a neurologist and was sure it was all neurological.
The internist seemed ready to diagnose me with CFS, but is holding off for my neurologist to sort out her bit. The internist basically said that once the neuro sorted me out she would help treat all the remaining symptoms.
I think that there is definitely something autoimmune happening, haha my body hates me for sure.
I don't have much to add except that I am seronegative and dx MG, likely because of my knoweldgable neuro. During my many doctor visits I mentioned MG to my PCP, who instantly said..."you don't have that". She didn't even consider it for one moment. So I do think it make a big difference on your doctors. I know leaving a doctor is almost as bad as breaking up with a long-term hairdresser, lol. Seriously you really do not find another doctor. If for no other reason but to get someone fresh to review it.
For me, I foolishly kept pressuring my neuro if he was right about my MG dx. As if he was wrong then my symptoms would go away or something, ha ha. Wish it could work like that.
You mentioned a lesion on yr pituitary, I guess you've looked into Addison disease? I think some of the symptom for MG are similar to adrenal insufficiency. And pred. would help you feel better if it was adrenal issue. But a droopy eyelid seems to be MG's trademark. I've heard many people say MG doesn't hurt, but my jaw hurts all day long. It goes from a dull ache to unable to chew/finish a meal from the pain. I also get headaches frequently. I had to stop worrying about fitting a diagnosis box and focus on trying to feel better.
Keep up posted. Everyone here is a lifesaver!
With a pituitary lesion could certainly be experiencing adrenal insufficiently. I think it would be beneficial to have a heart to heart with your neuro about that aspect and push for more answers there.
Good luck to you and please keep us updated. Hugs!!
Angie