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Back From Hopkins


Dizzy Dame
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Hi All,

I just returned from my big neurological work up at JH. The tests consisted of an EMG, and several "fiber" tests where they stuck a giant needle into my face and arms (owwwwie! :) ). My regular EMG was fairly normal, but the single-fiber EMG's were abnormal.

Right now Dr. Chaudry doesn't know what to make of it. He briefly mentioned that I might have a combination of MG as well as some kind of Autoimmune process that's also attacking my autonomic nervous system. He also briefly mentioned mitochondrial disease. He said he wasn't sure about Lyme, and suggested I see a lyme specialist (which I'm already doing). He also mentioned that a thymoma (sp?) could be causing all of my symptoms (the autonomic stuff + the muscle weakness/numbness).

I'm really scared at the thought of mitochondrial disease. I've done some research and the prognosis seems pretty grim. Does anyone here have mito disease? (I know melissa does, but the poor dear's in the hospital). Does anyone have MG + POTS? Can anyone give me any advice, answers about either condition? Also, has anyone had a positive EMG (single-fiber or otherwise) and had Lyme?

Thanks,

Lauren

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I, technically, have MG and POTS. I have NOT been UN-diangosed with the MG yet, so that's why I say it that way. I, too, have a thymoma and have been told the exact opposite of what you were told. I was told that it's probably not effecting me at all....... :) . Since it hasn't grown in the last six months, they've decided to leave it be, since the surgery to remove it is quite horrible (cracking the chest and all....).

I've never quite completely fit into either category. I have "extra" symptoms/problems, then either disease alone can "account" for. Although, I believe that the "OTHER" disease is probably more likely to be vascular EDS.

I'd be more than happy to PM with you, if you would like. I've been through the entire work up for Myasthenia, so I know what you're in for. LOL, that sounds ominous doesn't it???

Good luck on your journey!!

Bec

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Thanks Rebecca. Yes, the MG + POTS doesn't explain all my symptoms either. I have chronic pain that can't be explained, plus the numbness.

And the tests were HORRIBLY unpleasant. All I have left is a CT scan for a thymoma and a bunch of blood work. I had positive ACH receptor antibodies in January, so I'm expecting they'll be positive again as well.

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I believe that the suspected diagnosis for Melissa (Sunfish) is mitochondrial disease, which is why they were trialing her on IVIG. Perhaps when she's feeling better, she can give you some relevant links/info. In the mean time, keep her in your thoughts as she is in the hospital.

Nina

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hmm.. well my dear i hope that you get some concrete answers! from those nasty tests!!

good lcuk and please do let us know what you find out..

HUGS!!

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Hello Lauren,

Okay, here goes. This could get long!

Melissa has what they think are TWO separate processes going on:

(Oh, and by the way, I got her permission today to post this information. But she right away said she'd be checking up on me when she could be on the computer to make sure I got it right! :) She cracks me up! Actually, it's so darned complicated, I wouldn't be surprised if I mess it up, but I'll give it a go since she is seriously down for the count right now. She's making me look like I'm running marathons. Not funny. I have told her to stop one upping me, but she isn't listening very well, now is she????? :) Okay, done being goofy. Time to get serious.)

1. Mitocondrial disorder. The only other person on this site that I know of with this diagnosis is Steph. It's not a 'happy' diagnosis. Melissa is trying some things like CoQ10 and such for it. This has helped her brain fog and she has been able to do some reading which is good. I don't understand the mito disorder very well though, so she will have to chip in. She's just sort of in the beginnings of trying to manage it.

2. Autonomic Failure (Progressive) CAUSED by and autoimmune neuropathy. This sounds sort of maybe like what the neurologist was talking about for you? An, autoimmune cause for the autonomic problems you are having? The IVIG treatments are actually not for the Mito as Nina thought, but for the autoimmune problem. The reason it is a crapshoot for her is b/c they can't for sure identify the antibodies she has, like they can in some people with ANS problems who have certain antibodies they can test for and then they use the IVIG. The IVIG has tons of antibodies, many that they can't test for yet, so they are just hoping and praying that it has the antibodies she needs, will flood her body with 'good ones' and help her improve quality of life. But, there is really no way to know at this point.

The EMG sounds oh so fun! NOT. I have not had one. I do not know about that and Lyme. I do know that my neurological symptoms are quite extensive and we have not found another possible cause other than Lyme. I had abnormalities on my physical exam that mimicked patients with cervical stenosis. So, who knows. Lyme has been called the 'great imitator.'

Okay, well, I do hope this helps a bit!!!!! It really sounds like the neurologist you saw looked at a lot of possibilites and a ROOT cause, which I think is encouraging. But, I am sorry to hear it's not more 'happy' news at this point. I think there are a couple of people with MG on this site, but am not sure. Ariella was diagnosed with it and then now she thinks instead she has Lyme. Have you done a search for it?

Also, I remember in Sunfish's hospital post someone asked her to explain her diagnoses and also the IVIG, so if you want more info, I can find those for you. Let me know. She rarely posts a New topic, so it's in one of her last two updates...

Emily

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Em,

Thanks so much for your detailed answer! I did like Dr. Chaudry although his bedside manner isn't very good. He does seem to be interested in the root cause of all my problems, whereas every other doctor I've seen seemed only interested in my symptoms (ie. POTS, etc).

NN,

The small fiber EMG is where they insert a long needle into your arm or face or hand and electrically shock the area. The needle is thin enough that it only shocks one or two muscle fibers whereas a regular EMG shocks clusters of them. The small fiber EMG is the most detailed of the kinds of EMGs and is capable of picking up trace muscle weakness (like mine is). I can say it's one of the most painful tests I've ever had done. My arm's still sore and stiff from it!

Hope that helps!

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Yup, it was definitely an unpleasant test, and the doctor never warned me about it, he just started sticking needles in me and I was like HOLD UP! but by then it was too late. My favorite line was "try not to wince, it's interfering with the test". Sheesh! At least it's over :ph34r:

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hi

Here to tell you about single fibre emg's. I was dx with MG because of a suspicious sfemg (only to be undx a couple of months ago by a negative one). SFEMG is highly sensitive for myasthenia gravis, as opposed to a regular emg. There are other conditions that can cause a positive sfemg, but my understanding is that MG causes the strongest jitter on the sfemg.

Not a pleasant test. I went straight from the test to the wedding of a close friend's daughter and couldn't eat a thing.

I'm currently checking out whether or not I have lyme, and have lookied into emg's in lyme. The general consensus is that they aren't useful for lyme. My neuro, who was looking for ALS or at least a bad case of MG due to worsening of weakness, told me to check for lyme when the test was negative. Lyme can produce positive or negative results.

Anyway, it's more likely to have one condition such as lyme or mito causing both ANS dysfunction and muscle issues than to have two unrelated rare conditions. Please be on top of any thymoma possibilty, it can turn dangerous. Very.

I hope this post makes sense, not feeling so great right now. Please feel free to PM me for info about MG. There is a great online forum for MG questions, but their computer crashed and is currently offline.

Ariella

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As far as the IVIG goes for our little Miss Sunfish, I'm hoping that it goes well for her. It was a very hard treatment for me, personally. I ended up with aseptic-menangitis from it and was in severe pain for about two weeks. However, once that part was over, I felt better and better everyday. I felt great for about 6 weeks, too!!! :):D:D

This was back when they thought that I had MG only. I had severe muscle weakness and responded well to Mestinon (which is funny, because I was told that the ONLY condition that Mestinon worked for was MG, so that was another reason why they DX me with it - differential!!). The blood tests and EMG/SFEMG always came back "normal", so they could never figure out why I was so sick and it looked so much like MG, but the tests said "no". The only test that came back positive for MG was the Tensilon test (Tensilon is a drug that is pretty much a big brother of Mestinon!!! :ph34r: ). Anyway, I'm greatful for the IVIG as I really think that it was a turning point in my life. I can't imagine still being as sick as I was last summer. It was horrible.

Since I can't seem to figure out how to get tested for any sort of ANS issues or how to figure out whether or not it's autoimmune, hyperadregenic or both, neither, I guess I'm screwed. I still, technically, have the DX of MG, but I know that it's wrong. Well, I don't KNOW, I guess, but it just feels to me more like ANS issues and VEDS, but, hey, it's just MY body, what do I know, right???

Emily- How did they figure that Sunfish has/had an autoimmune type of dysautnomia? You could PM me, if that would be okay with you and Melissa (please and thank you!!). My doctor has told me that he'll order whatever tests I ask him to, I just need to know what to ask for, you know???

Good luck on your journey!!!

Bec

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hiya lauren -

em did a great job with info in my absence & i'm too wiped now to fill in more details but i will do so...i promise. hopefully sometime between now & when i'm locked back up next week :blink:

just wanted to let you know i did read the post though...other than the ones actually about my crazy last week it was the first one i looked for yesterday when i first logged back on :huh:

glad to see too that you're feeling a bit better at the moment & hope that it continues.

i'll be back with more ramblings over the weekend...

:) melissa

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lauren,

i am sorry that your doc mentioned mito. as i think i was the one asking about the mito and IVIG in sunfishes post, i thought i'd help emily and find it for you. and guess what: i can't find it anymore :rolleyes: . now i'm mad because i hadn't finished reading yet and someone lost my prints (i wonder who that would be ???? :P ). so maybe, em, when you're reading or anyone else who is less clumsy then i am, do you think you could find it for lauren (and me of course)???

corina :(

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Thanks Corina, I'm pretty curious too as most of the research I've done on mito has been fruitless.

Melissa,

Thanks so much for answering my post. However, I don't want you to wear yourself out during this difficult time, so if you don't feel up to answering, I completely understand :rolleyes:

Hugs,

Lauren

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