[bluesky]

My head is spinning!!! I saw the mg specialists today who I've waited months to see. I was really trying to buck myself up and not give in to despair. Really though, I felt like I was walking down to the gallows. I was trying to tell myelf this isn't the end of the line, etc. etc. I was sure I was going to hear the same nonsense: you don't have mg because there are lots of false positives, because it's not a disease that relapses and remits. The usual. But after he took my history and he started asking all the right questions (like have you had a scan for thymoma - I had to beg the neurologist in my home state for that and he insisted mg had nothing to do with thymoma) he said: "Well of course you have mg, everyone with a positive antibody has mg" (and plus, I arrive, thank goodness, with a nasty case of ptsosis). Oh my gosh. I had a smile on my face three miles wide.

But then he said something that I would never, ever have guessed even if you had given me a million years to think of it. He said, "but I don't think that's why you have breathing problems. People with mg don't have low oxy sats". I was so stunned it took me another 10 minutes to form my question into words. I asked him, isn't that why people die? And, don't the oxy sats tank before they go into crisis? And he said yes, that's true, but then they go into crisis. It doesn't happen all the time when they're sitting around.

So. I'm in a state of shock. I'm really happy. I have a diagnosis. I have a foot in the door. This guy has a good reputation and he's smart and he's thorough and he ordered a lot of tests. He's going to stick with me. But he thinks I only have a mild case of mg and it's not what's making me so breathless and exhausted and sick. Okay, he does have a good point which is that I pass that stupid neurology exam with flying colors which I always do. When I'm sick I can't hold up a blow dryer without feeling exhausted and having my muscles hurt like I'm holding up a barbell. I read a kindle instead of books because it's lighter and I sort of lie down and lean my arm backwards on a pillow while I'm holding it. But I never get weak enough that my arms go down when the neurologists pushes on it or I hold them out for 15 minutes. Also, it's not my shoulders but my triceps that hurt. So, yah, he does have a point there. And also, he's smart, he cares and he's extremely well recommended and he's the first doctor I have trusted. And I've gone to SIX neurologists since I first got the positive antibodies back last January.

Still, I'm stubborn. Obviously!! I still think mg is my problem and all of my problem. But I've got my foot in the door. I'm going to go through all the tests. I'm going to listen to what he says. And then I'm going to beg for steroids because I'm going to lose my house, I'm a widow and I have two beautiful children to raise and get through college and they don't deserve a dead father and a sick mother.

Please, what does everyone think?

Ally

[erinhermes]

Hi sweetheart!

First off, let me tell you how brave I think you are and how amazing you are dealing with this!

Dealing with MG is hard, but once your meds are regulated you are going tto feel GREAT! I have acute MG so I am no longer able to work, but I am the exception to the rule - sigh!

The steroids do have side effects, but they are well worth it (in my opinion)!They have made all the difference in the world!

You hang in there! You have a DX and are FINALLY going to get the help you need!

Love,
Erin

Originally Posted by bluesky

My head is spinning!!! I saw the mg specialists today who I've waited months to see. I was really trying to buck myself up and not give in to despair. Really though, I felt like I was walking down to the gallows. I was trying to tell myelf this isn't the end of the line, etc. etc. I was sure I was going to hear the same nonsense: you don't have mg because there are lots of false positives, because it's not a disease that relapses and remits. The usual. But after he took my history and he started asking all the right questions (like have you had a scan for thymoma - I had to beg the neurologist in my home state for that and he insisted mg had nothing to do with thymoma) he said: "Well of course you have mg, everyone with a positive antibody has mg" (and plus, I arrive, thank goodness, with a nasty case of ptsosis). Oh my gosh. I had a smile on my face three miles wide.

But then he said something that I would never, ever have guessed even if you had given me a million years to think of it. He said, "but I don't think that's why you have breathing problems. People with mg don't have low oxy sats". I was so stunned it took me another 10 minutes to form my question into words. I asked him, isn't that why people die? And, don't the oxy sats tank before they go into crisis? And he said yes, that's true, but then they go into crisis. It doesn't happen all the time when they're sitting around.

So. I'm in a state of shock. I'm really happy. I have a diagnosis. I have a foot in the door. This guy has a good reputation and he's smart and he's thorough and he ordered a lot of tests. He's going to stick with me. But he thinks I only have a mild case of mg and it's not what's making me so breathless and exhausted and sick. Okay, he does have a good point which is that I pass that stupid neurology exam with flying colors which I always do. When I'm sick I can't hold up a blow dryer without feeling exhausted and having my muscles hurt like I'm holding up a barbell. I read a kindle instead of books because it's lighter and I sort of lie down and lean my arm backwards on a pillow while I'm holding it. But I never get weak enough that my arms go down when the neurologists pushes on it or I hold them out for 15 minutes. Also, it's not my shoulders but my triceps that hurt. So, yah, he does have a point there. And also, he's smart, he cares and he's extremely well recommended and he's the first doctor I have trusted. And I've gone to SIX neurologists since I first got the positive antibodies back last January.

Still, I'm stubborn. Obviously!! I still think mg is my problem and all of my problem. But I've got my foot in the door. I'm going to go through all the tests. I'm going to listen to what he says. And then I'm going to beg for steroids because I'm going to lose my house, I'm a widow and I have two beautiful children to raise and get through college and they don't deserve a dead father and a sick mother.

Please, what does everyone think?

Ally

[AnnieB3]

Well, Ally, it's about damn time. It's not great you have MG but great you have someone who says "of course you do."

But he's wrong about the O2 stats!

What you need is to see a pulmonologist. They will assess your breathing, O2 stats (hopefully while walking) and go from there. Make sure they do MIP and MEP too. They are the ones who know more about O2 stats, etc. than neuros do. Have you - or anyone else - EVER had a neuro pull out an oximeter during an MG exam? I doubt it. Not even the good ones do it.

I hope you will now get good care and be able to do more. Don't push it though!


Annie

[JCPA]

Hi Ally
It does sound like you finally found a good neuro. I was shocked that you had been to six neurologists without a firm dx. According to the MGFA professional manual guide on the myasthenia.org website it states "finding elevated AcHR antibodies in a patient with compatible clnical features essentially confirms the diagnosis of MG but normal antibodies does not exclude the disease." It's a shame you had to go thru so many doctors, especially with a positive blood test. The thymus does have something to do with MG, How can a neuro say that the thymoma has nothing to do with MG? The thymus's main task during childhood is building the immune system. Hence MG is a autoimmune disease.

Also, what are your major symptoms? Are you having breathing problems? And how are you feeling now? Have you had the scan for a thymoma?

Hate to ask so many questions but you don't need to mess around with the breathing problem part of this disease.
Let us know.
JJ

[Pat 110]

Hey Ally,

I'm so happy for you that you will finally get the help you need to start feeling better. It helps to like the doctor as well. Take care.

Hugs,
Pat

[dog lover]

Ally,
I am pretty recently diagnosed and had my neuro tell me the weakness in my arms wasn't MG related either. I tested postivie in the antibody test and am going tomorrow for EMG testing. I am not currently on Mestinon but I am very hopeful I will get that soon after hearing others say they started meds right after the EMG testing. I asked the neuro if the Mestinon would help my chronic fatigue and the weakness I have in my arms in the morning. He said that wasn't MG because you don't wake up weak it gets worse as the day goes on. I was thinking of exactly what you said about the blow dryer feeling like a bar bell in the mornings! I was still pretty new and uneducated about this a month ago but plan to discuss it with him again when I see him in Nov. I totally agree with what you, it HAS to be MG related. As depressing as MG is at least you have a firm DX. I don't want this disease but am relieved to know I have a firm DX. I Have read posts from others who are so much worse than me and don't test pos. for the antibody. I can't imagine how frustrating that must be for them. Hang in there!
Kendra

[rach73]

Hate to disagree with your neuro, but you can wake up feeling weak. Some mornings I wake up and can't hold a coffee cup until I Ive had my mestinon! It just depends how you are doing that particular day, MG is variable but if I wake up weak, I will only get weaker.

I can also wake up with ptosis and the side of my face completely dropped down.

Unfortunately neuros aren't the ones that live with disease! Otherwise Im sure there would be better tests and treatments LOL!

Love
Rach

[rach73]

I also agree with Annies post. MG does affect your breathing and that would cause low o2 stats. Thats why its recommended you see a pulmanologist who specialises in people with neuromuscular diseases.

Glad you have finally got a diagnosis, I still wait on mine!

Love
Rach

[Nicknerd]

Hey Kendra,

I also wake up weak...If I do not take mestinon SR at night, I have difficulty moving my tongue for hours after waking up, until the dose of regular mestinon kicks in...I also thought that because of this, I must have some other disease, not MG, but my neuro. insists that it's all from the MG, and the mestinon SR seems to alleviate this problem so it really must be MG!

Nicky

[Shari_W]

What is mestinon SR? I agree about waking up weak. I wake up weak all the time now. It really bothers me that whenever I read something about MG, it only says that weakness gets worse as the day goes on. That's true too, but in my case, weakness occurs whenever it wants to.... morning, noon and night.