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...
Good Morning !
I'm new here today. I've been suffering for 9 months from something.......
I think I may have MG but not sure, I'd like to tell you all my symptoms and see what everyone thinks.
It all started just after Christmas I got really sick with a flu bug. All hell broke loose then. I started with vertigo & nausea. I have a numb / clumsy feeling right leg and foot. Sores on my scalp. Violent leg spasms in the night that are strong enough to wake me up (if I'm sleeping that is - sarcastic remark) LOL. Eyes are sore, feel bruised and hard to move. Face muscles feel exhausted like the sensation of it being hard to keep eyes open. I tire very easy, can't work because I tire like after an hour of any physical work. I find it exhausting to walk up stairs (I don't smoke). I feel short of breath and fullness under my breast bone. When I get hot..... everything intensifies!!!!!
My Doctor sent me to a Cardiologist, no heart issues. I've been sent to the ENT Doctor he said "he can't help me, most likely a balance disorder and wants to send me for an ENG test" (been waiting for 3 months and still have not got into get one). I was told to go see an Optometrist, I did, she says no problem with vision, however says my left eye - the eyelid is a bit droopy. (has been like that all my life- lazy eye - Amblyopia since childhood). Doc has sent me to the Lab so many times for various things , It's a wonder I have any blood left in my body ! Last week my doctor finally admitted that I should see a Neurologist, that I "may have MG or MS". He has sent me for another blood test (ACHR) and waiting now to hear when the appointment for Neurologist is.
Does my symptoms suggest MG to you?
I'm sick of no answers and not knowing.......
I'm new here today. I've been suffering for 9 months from something.......
I think I may have MG but not sure, I'd like to tell you all my symptoms and see what everyone thinks.
It all started just after Christmas I got really sick with a flu bug. All hell broke loose then. I started with vertigo & nausea. I have a numb / clumsy feeling right leg and foot. Sores on my scalp. Violent leg spasms in the night that are strong enough to wake me up (if I'm sleeping that is - sarcastic remark) LOL. Eyes are sore, feel bruised and hard to move. Face muscles feel exhausted like the sensation of it being hard to keep eyes open. I tire very easy, can't work because I tire like after an hour of any physical work. I find it exhausting to walk up stairs (I don't smoke). I feel short of breath and fullness under my breast bone. When I get hot..... everything intensifies!!!!!
My Doctor sent me to a Cardiologist, no heart issues. I've been sent to the ENT Doctor he said "he can't help me, most likely a balance disorder and wants to send me for an ENG test" (been waiting for 3 months and still have not got into get one). I was told to go see an Optometrist, I did, she says no problem with vision, however says my left eye - the eyelid is a bit droopy. (has been like that all my life- lazy eye - Amblyopia since childhood). Doc has sent me to the Lab so many times for various things , It's a wonder I have any blood left in my body ! Last week my doctor finally admitted that I should see a Neurologist, that I "may have MG or MS". He has sent me for another blood test (ACHR) and waiting now to hear when the appointment for Neurologist is.
Does my symptoms suggest MG to you?
I'm sick of no answers and not knowing.......
Feels good to have someone actually talk to me about it.
Welcome to the nicest group of people around. I'm sorry you are having problems, but the people here will offer you the best advice and support you can ask for. Feel free to ask as many questions as you like, everyone will offer what they can as far as answers go.
As far as you condition, it sounds like you have made a good start. Unfortunately, your symptoms are problematic in more than one way. Not only do you have the frustration of what they are doing to you, but now you get to enjoy the frustration of finding out what is causing them. Until you know that, you can really only help out with symptom band aids.
With that said, many of your symptoms do sound like MG, but please understand the differential diagnosis for your symptoms is very large. Accordingly, it might take you a very long time to get to the bottom of it. My best advice is to keep fighting for the answers, and to take ownership of the situation. Some doctors are a whole lot of talk, and not much action. If they are; find new ones.
When I say you should take ownership, I don't just mean individual doctors, but I also mean often-missed specialists as well. There are several clues in what you have written that might help you play an active role as you continue your search. Unlike many people, you have already been proactive with a few different specialists, but you might have missed a few that could really help you. Accordingly, I will throw in my two cents.
I noticed you said you went to an Optometrist. I'm not sure if that was a slip-up, but if it was not, then you need to see an Ophthalmologist. Better yet; try to see a Neuro-Ophthalmologist. If you are having eye issues, they will likely find specific problems a long time before the Neurologists will.
With the eye issues you described, you could very well have MG, but you could have a lot of other issues as well. To name just a few, you could have: optical issues (like cranial nerve damage), endocrine issues (like thyroid), or muscular dystrophy issues (like OPMD). In my opinion, the Ophthalmologist is your best bet for a closer look at your eye problems.
Now don't get me wrong, a good Neurologist is also going to be a great help, but I do recommend looking at more than one specialty. You have already started that with an ENT and Cardiologist, which are two I would recommend, so the good news is you have made a very good start.
THAT SAID, I WOULD ALSO GET IN WITH A PULMONOLOGIST AS SOON AS POSSIBLE, DUE TO YOUR ISSUES WITH SHORTNESS OF BREATH. THIS ONE CAN SAVE YOUR LIFE, SO MAKE IT A PRIORITY. :-)
Many of us think about the Cardiologist, Neurologist, ENT, and Ophthalmologist, but we often forget about the Pulmonologist. Typically they have a wealth of knowledge and experience, including a whole lot of experience in the ICU. With a Pulmonary Function Test alone, they can definitely get you headed in the right direction.
You also might want to see a Dermatologist, due to the sores on your scalp. Just like the other specialists I mentioned, they may have a diagnosis for you, but if not, they might be able to lead you in the right direction.
Based on the symptoms you mentioned, that is where I would start if I were in your position. You may also want to consider an Endocrinologist, Rheumatologist, Oncologist, Immunologist, Nephrologist, etc. in the future, but with the symptoms you mentioned, that is where I would personally start.
I hope your search goes well for you, and that you get your answers quickly. Also, I hope my two cents helps you out a little bit. Again, you are in the right place, with the right people, so: Welcome!
Scott
After finding this site yesterday, reading many other postings as well as the replies I got to my own posting, I feel much better today.
I learned a lot about MG and feel now that when I go to the doctor next I will be better educated to help him help me sort of speak.
Take care all and I will keep reading others stories as well as post my updates. :)
I agree with every one else and might add try and keep a diary so when you go you can tell them everything about what you have been going through and if possible take a short movie when you are at your worset so they can see how you walk etc.
good luck
chuck