Hi there and welcome..Sorry to hear of what you are going thru...I know how frustrating and hard it is...Im afraid ALOT of your symptoms could point to MG....The weakness, droopy eyes, worse in heat for sure, hard time swallowing etc.....Of course it could be other things but MG is a strong possibility and getting diagnosis is hardest part...Alot of us here went thru MANY drs and frustrating times before we got a DX...I would see a neurologist ASAP and hopefully find one who specializes in MG, MS etc....Will make things much easier..With blood tests and probably a ct scan of chest etc they will be able to give you an answer whether its MG or not..So then you will be on the right path for treatment..There are great and knowledgeable caring people here who give great support and we are always here to help so keep us posted..I hope all goes well and as i said would get to the neuro asap....Good luck and hope things go well....jacki

Thank You so much Jacki ! :)
Feels good to have someone actually talk to me about it.

Hi Connie, I feel your pain, the waiting for a diagnosis, wondering if it is this or that, that will drive you nuts on top of not feeling well. I was a lucky one, diagnosed within 3 months of symptoms. I am hopeful that your blood test comes back conclusive, but keep in mind sometimes there is a false negative with MG and your symptoms could be many things. I have to agree that many of them are symptoms that we share with MG. I know that doesn't make you feel any better, but i will say a prayer for you, better days are coming ....sounds like your doctor is working with you..

A seasoned neurologist will diagnose if you have myastenia gravis the moment you put a step in his/her office.

Hi Connie,

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

Thank You Maureen, Alejandro and 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. :)

Hello, and welcome to the group. Ditto for what the others have said. Hope you get proper diagnosis, and treatment soon. Please keep us updated.

Hi Connie
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