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.
So I had an absolutely awful appointment with my internist yesterday. She basically said that she had talked to my neurologist and they are convinced it is not MG and is Chronic Fatigue. She said that my neurologist is just trying to be nice to me. I asked about being tested for LEMS and she said no, and that my neuro had ruled that out along with MG, so there was no point in that test. Apparently my Pulmonologist appointment has nothing to do with MG or no MG and is to see if I have a lung condition. She basically said that I was likely to be handicapped for life and that I should just accept that :'( She suggested I go to support groups for people with undiagnosed diseases.
She then offered to drug me up. So I explained I didn't want to be on a bunch of drugs that would confuse a potential diagnosis. So she said there was some things she could put me on to "help me cope with day to day life better" and offered to put me on antidepressants and sleeping pills. I then had to explain that I was not depressed, I was not in pain, and I slept fine (Clearly she had no listened to any of my current complaints I just said).
I then said that it felt like no one was believing me. She assured me this was not the case. So I had to explain that I never said they didn't believe me, and that it was how they made me feel. She offered to sent me to a Chronic Fatigue Syndrome specialist, but I informed her I am not ready for that. She then asked if there was anything she could do for me, and I said unless you can make my muscles work all of time, then no. I then left in tears.
I called my boyfriend understandably upset. He says we just need to keep fighting and that maybe it means going out of town to a different specialist.
I started to doubt myself this morning and that maybe I should just accept it is CFS. So I took a mestinon and my breathing seems easier. I am just at a complete loss :( How does one know when to give up and just accept you will always feel this way? :(
Hope you get answers soon.
I can understand the difficulty you've had because I've been there, as I said earlier. I really wish this would be a much easier process but that is likely not to change much or very quickly because there still isn't a real commitment to research at this time. There is some research being done by a few dedicated doctors but we don't have the name recognition that other diseases have. If this were Spina Bifida, Parkinson's, Muscular Distrophy, or Cancer of some kind, people would be dropping money left and right to fund research. Nobody has heard of it so most people have no connection to it. That's what brings in the money. Until someone devotes the money and invests the time, we will never get to the point that other disease research projects have reached. What would really be helpful is to get a big name celebrity to get behind the cause and work it nationally with commercials and print ads to create awareness. Sorry... I guess I found my soapbox on this topic.
Back to you now... So you've seen a Neurologist, Neuro-ophthalmologist, Rheumatologist, Neuromuscular disease specialist and have . Is that right? I have to say, I think you should never give up on fighting for a diagnosis. Nobody wants to fill this way. It sucks!!! I believe you should be looking for opinion after opinion until they get it right. That's what I did...but that isn't for everyone so I understand if you don't feel like you can go that route. I hope that you don't have to continue to push so hard to do it all on your own. It shouldn't be that way. I wish you luck and I hope you get some answers soon. Many hugs to you from afar.
Angie
Do not be afraid to switch doctors, both primary and specialists if needed. I just switched neurologists after seven years. I also felt mine was waiting for something terrible to happen before he would diagnose me and would rarely order any tests and even his exams were very minimal.
I switched neurologists last week and it was refreshing to have a doctor who did a better exam and seems to have some new ideas on tests, etc.
I agree with always trying to take someone with you to appointments. Many years ago when my primary asked one of my specialists if they were "chasing their tails" the specialist mentioned the fact that my husband went to every appointment with me as one of the reasons he believed me.
Hang in there. (Hugs).
So just a little update on things with me. So I saw a pulmonologist the other week and he feels that my shortness of breathe and chest pain is related to inflammation of the lining of my lungs, which is apparently common among people with positive ANA tests. I have also started to get alot of really bad joint pain. My GP has given me prescription anti inflammatories which only take the edge off really. She is sending me back to a rheumatologist as it seems all my doctors are now seemingly on board that it is something rheumatological like lupus. But my pulmonologist sent me for some breathing tests. One of these tested the strength of my breathing muscles. The guy who did the test says it seems my inhalation breathing muscles are affected and are weaker than they should be. Also, he kept making me repeat the test in hopes of getting a better result, but of course the more I did it, the more tired I got and the weaker I was. So I am now waiting until early Oct to get back into the pulmonologist to see his thoughts on it all. I was just wondering if other people had this test and what the results were.
But after the second test, I couldn't walk across campus to go back to work. I had to sit for 20 minutes to feel well enough. When I told him about that at the followup appointment, he said I think your issues are cardiac or neuromuscular. I had the cardiac workup (just a little tachycardia) and then my family doc referred me out of town to an MG specialist. I'd already had MG ruled out three years earlier by a local neurologist who said I need to see a shrink, but this was before the worsening symptoms made it more obvious and then the Mestinon test clinched the deal.
So hang in there! You aren't the only one going through this. I highly recommend reading Chloe Atkins book "My Imaginary Illness....". I read it first because I had a mystery calcium disorder no one could diagnose, but read it again recently. Her MG was misdiagnosed for many years as psychiatric disorders!
Flutebell
It's great to have a support group like this; yes, it is good to know you are not the only person, facing these types of problems.
When chronic conditions develop, it can often take quite a while, to get a correct diagnosis.
When you possibly - have more than 1 chronic condition?
The mix of symptoms - can lead to a lot of confusion, and can complicate getting a diagnosis.
Beyond that - when some of these possible conditions, are considered a "rare disease"? That complicates things even further. A Neurologist, well-experienced with rare neuromuscular conditions - may be needed. As Angie said, a well-experienced Neuro is usually found only in teaching hospitals, in big cities or regional centers.
Check out the Myasthenia Gravis and Muscular Dystrophy and Multiple Sclerosis foundations, for your region. They can give you referrals, both general and specific. Check their websites; give them a call. (You may find that some of your current physicians, may belong to departments, in hospitals, that are recommended.)
Google may help you. For example: if I type into Google "myasthenia doctors boston mass"? My doctor's hospital pops right up, where you can see that St. Elizabeth's Hospital is now 1 of 2 MG Clinics, in MASS (I'm in Maine).
All this can seem like a lot of hoops to jump through, but just take them - one at a time.
It sounds like you are working with some decent physicians, after some misfires. Until things get sorted out, try not to focus on any particular condition.
Did any of your doctors have you try Mestinon? If you improve with doses of Mestinon? That helps the doctors towards a diagnosis.
If Prednisone 20mg helps you? Stay right on it, with your doctor's okay. That is not a large dose, as Ann mentioned. Many of us have been on much higher doses, for longer periods of time.
Hang in there! - Ross
Cheers
Ashley
I'm so sorry you are going through this, the years of struggle to find a diagnosis can feel like an impossible task. I just wanted to add to everyone's comments (this group is so wonderful), I had many of the same symptoms you have, it is possible MG causes them all. Some of us with MG have a lot of joint pain. The weakness causes many things to happen, when I am not well I have severe neck pain, joint pain, back pain, jaw pain etc. Before I was diagnosed I was sent to one rheum after another, over and over. The muscles in my knees no longer held them together, my knees actually swelled from trying to walk. Severe fatigue and be a part of the disease as well. I also had finger and toe numbness and pain (can be reynaud's, another autoimmune issue).
When we are sick our bodies feel horrible in a myriad of ways, and doctors may hear something that does not fit the picture of MG and dismiss the diagnosis. The reality is that we can have MG and also feel our bodies fall apart in ways that are not in the medical literature as "definitively MG". Some of us also have dysautonomia with the MG. I was sero negative, but I had a positive tensilon test, have you had this done? My emg was positive (in the hand, arm), and my doc said I was MG and I burst into tears. Happy to have a name for the nightmare, to put it bluntly.
Keep us posted, I hope that you find a doctor that will listen to you, don't give up!! Keep going and keep searching until you find the answers you need.
I'm currently going through the EXACT same things as you to a T !
I feel as though my doctors are passing the buck, I've left appointments crying, they keep wanting to give me depression drugs, I feel I'm not taken seriously and I get the feeling my family physician is just waiting for something bad to happen.
I feel like I'm being abused by the medical field (emotionally) rather than being helped.
Although I feel defeated, want to just give up and suffer in silence : I have taken the advice of people here and requested my family physician send me to an MG specialist in London.
I'm currently waiting to hear when I'm to get into see this Doctor.
Keep trying, don't give up.
Connie
Keep going and keep checking in with this group, the people here are so knowledgeable and kind, they got me through the shock of the initial diagnosis. I hope you both find a doctor that will help, keep us posted.
:)
I am sorry you are going through so much. I understand your frustration. I too am seronegative with a neg. SFEMG but I respond well to the mestinon. During the investigations and attempts to get a diagnosis, I did see a wonderful neurologist. She explained to me that she thought that I had more than one diagnosis. I was also told that I have both MG and ME (myalgic encephalomylitis, that is what we call it in Canada, you know it as CFS). It is a real physical (not psychological) disease that can be totally disabling if not treated properly, not to be taken lightly. To be totally honest with you, I find that ME/CFS is far more debilitating than the MG. In fact, combined with MG, it can be quite a challenge to treat. If the prednisone works and gives you some life back, then do it. If the doctors want to send you to a specialist re the ME/CFS, I suggest you reconsider. I am glad I did. I now have more of my life back. I have 5 autoimmune diseases, but these 2 are the real challenge to treat. Don't give up, but keep an open mind.