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I just found a doc who wants to investigate (many tests) my case to find why I have muscle weakness and paralysis. My question is: Is is worth to investigate in muscular neurology or should I just be satisfied with a POTS and NCS diagnosis?

Personaly I feel that until we find the reason of my muscle weakness and paralysis I will not be able to improve some more. But I am afraid that the doctors or other people will tell me that I am making the government spend money on my case for nothing.

What do you think?

Thanks

Ernie

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Hi Ernie, I can only give you my biased opinion. I feel pretty strongly that symptoms which are atypical of POTS and NCS should be followed up on. So, my response to you would to consider going through testing, particularly since, in your county, that service is covered...and if they find something treatable, you may be able to recoup some of your health.

I hope you find answers. Nina :)

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I made my doctor do a lot of testing on me because I wanted to see if a CAUSE could be found for my dysautonomia. In the course of testing for autoimmune stuff, my achr test came back elevated. This is a blood test for antibodies to acetylcholine receptors. This test can be a marker for myasthenia gravis. My doctor was so surprised, since I display no symptoms for MG that he knows of, that he had the test repeated and it came out even higher. Thus, I will be getting an EMG test this Tuesday to test for muscle strength. If I were you, I would WANT to know more if at all possible.

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Hi Ernie! You are definitely not wasting the government s money!!! I have read your p0osts for the past two years and it sounds like something else is going on. It sounds metabolic to me.

I ahd to fight to prove that my muscle weakness and ataxia were not a conversion reaction. I finally found a Dr who would listen to me. My first EMG was normal. I found out the person doing it can make a difference. They say it is an Art. My second EMG was abnormal. I just had a muscle biopsy which was abnormal in the mitochondria. It has been sent out for furthur analysis. I will hear in 3-4 months.

If it was not for my children becoming ill and my daughters neurologist. I would of given up and takingthe dysautonomia diagnosis.

You may have a deficiency somewhere that can be helped with a vitamin, mineral...Even if their is no fix you deserve an answer. Also, the more patients that push the Drs for answers. THe better future for others with these weird illnesses. We can't give up. We are not quiters! We are here to support you.

Best Wishes,

Dawn Anich

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Dawna, If you don't mind my asking, how would I know that the person doing my EMG this Tuesday) is any good? Are you saying that from the EMG, they determined that they should do a biopsy for mitochondrial disease, and you are awaiting the results of the test for mitochondrial disease? Just curious since I have my EMG this Tuesday and really do not know what to expect.

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ernie,

i agree completely with the others....

i too have read your posts since i joined ndrf and now on this site...and your story is full of so much physical suffering...

you DESERVE to find what is making you so sick...and hopefully in turn, answers to help you feel better.

the quest to find an answer to your SUFFERING is worth the bucks in gov't money...

you are a human life who deserves the best answers to you struggles....it's not about money in my eyes...it's about your quality of life, which is very low right now (i think i am right on that)...

yes, the gov't in our country and yours spends money on ridiculous medical procedures. sometimes i gasp at what medical asssitance doesn't blink an eye at...

but in your case...there is no question that these tests are worth it for you. YOU ARE WORTH IT ERNIE AND SO IS THE QUALITY OF YOURLIFE!

the reason medicine is here, when used correctly, is i hope, to relieve human suffering.

may you find answers....you have had a tremendous struggle and you keep an amazing spirit.

emily

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Hi Ernie,

I think it's not a matter of wasting money on whoever. And DON't let anyone make you feel that way. You deserve to know what's going on with you and must be glad there is a possibility (and it's paid as well :) ). In my opinion it's more a question whether your up to it, since all those tests can make you feel exhausted (as well physically as mentally). So if you think you can handle it GO FOR IT, who knows what it'll bring you! And don't think they're wasting money on you because you definately deserve it. Wish you all the best

Corina

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I agree with everyone! You should not feel as though you are wasting money on your case, because you need to find out if there is anything else going on. You have the right to do so and you deserve to know. I hope you will decide to proceed, for your own peace of mind. Good luck :)

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Futurehope, I am sorry but I can not answer that question. You should know during the test if it is abnormal. They will say something. If it is normal and you definitely feel like it is muscular you should definitely have another one in by someone else. Trust your own judgement.

Is your muscle weakness worse after exersise/exertion? If it is make sur you exert yourself today!! Then it is more likely to show up.

When I was referred by my genetisist for an EMG he requested that this specific Dr do it. I was told by the geneticist that he was the best neuromuscular Dr in the midwest. By the way, he did not do the EMG. It was done by one of his colleages and a student. The neuromuscular Dr just walked in a few times. The Dr who performed it and the fellow both said the person who performs it can make a difference, especialy if it is subtle. I think a lab that performs them often is your best bet. I went to a major teaching hospital. The best neuromuscular Dr in the midwest agreed to take me as a patient. Unfortuanately, his associate who thought I had a conversion reaction did not OK it. I am still seeing her. She now listens to what I have to say. I will say a prayer for you tommorow.

The abnormal EMG is what proved my symptoms to be real. My EMG, symptoms, other diagnosis and my children's problems all warrented for a muscle biopsy. Under light microscopy is were they saw the abnormal mitochondria. My muscle was then frozen for furthur testin...electrom microscopy and mitochondrial enzymes. A muscle biopsy is something that can be easily botched and can read a false negative. I know someone who had four before a diagnosis. However they are getting better at them.

Ernie, like corina said, make sure you are up to this. It is exhaustive and very emotional. I hope you have someone to support you in this. It sounds like that Dr is behind you in this. You do deserve an answer and a better quality of life!!! Just do it at your own pace. Take care of yourself.

Dawn a

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Hi,

Thank you all so much for your support. I have read and re-read your answers. I appreciate your advice and kindness. You are giving me the courage to continue fighting and searching for answers and improve my quality of life. You made me realise that my self-esteem was poor. I think that part of the reason I feel worthless is because I cannot work anymore (and be useful to society).

I am waiting for get a call from the hospital to schedule my testing. I don't know when they will call but the doctor said that the test would be in October or November. I am anxiously hanging around the phone waiting for this phone call. When I was "healthy" I never thought that one day I would be excited about going to the hospital for some tests. My life turns around doctors!

Thanks for being there for me.

Ernie

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Ernie:

I just wanted to add my words of support and second what everyone else here has said. Ever since we exchanged e-mails a few weeks ago, I've been hoping and praying you'd get some answers. Perhaps this doctor and the tests he's going to perform will be the answer to those prayers!

Good luck, stay strong, and hold on to the hope that things will be better for you!

Keep us posted, OK!?

RunnerGirl

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Ditto what runnergirl and everyone else has said, Ernie. You deserve to know what's going on, and it these tests will shed some light and possibly lead to a different treatment, then GO FOR IT! (I'd be looking forward to the tests too!)

PS Working's overrated. :lol:

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Ernie,

Please do not feel guilty for seeking as much info as possible on your condition. My neurologist couldn't believe I felt bad about having more tests done ... he said no patient should ever feel guilty or hesitant when the answers aren't clear and diagnosis is not apparent.

I had an EMG four months ago because I also have muscle weakness. The problem appears to be with my metabolism, though, not the actual muscles. I have muscle wasting, which apparently doesn't show up as muscle weakness on the EMG. Are you excessively thin? Have you lost muscle mass? Because this will not show up as an abnormality on an EMG, but rather should be evaluated by an endocrinologist.

Best wishes to you for trying to find an explanation for your dysautonomia. :P

Amy

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My problem is metabolic in nature and it did show up on the EMG as myopathic changes.Metabolic problems do show up in the muscles. If not through an EMG, than possibly through a muscle biopsy. Having a neurologist and an endocrinalogist who are willing to work together is your best bet. I only see a neurologist. Many of the metabolic disorders are under the category of Muscular Dystrophys. It is all a matter of finding a Dr willing to investigate furthur.

Dawn a

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i have to admit that i did not read the rest of the posts. I think that you absolutely have to examine this weakness. I had left sided weakness for several years and it got progressively worse. I used a cane and crutches for a while. No one did the tests I should have done, so I am still a little wary. However, it was discovered that my weakness is a type of migraine and sometimes I just get the aura, which is the paralysis or weakness part. Mine is called hemiplegic migraine. They found this when I went to the ER with paralysis and weird, very weird feeling. They did a catscan and other tests and diagnosed me with these migraines. My neurologist at that hospital started me on Neurontin and within 3 or 4 months, my weakness improved. Combined with intensive physical therapy, I am close to 'normal' now. With bad migraines, I get paralysis and weakness again, but not lingering afterwards. I am no longer ambidexterous, which stinks because I broke my right wrist. I drop a lot of stuff, I trip a lot. I cannot run, but who wants to with POTS. With frequent exercise (not hardcore, just leg lifts or weights or walking everyday) keeps me going. That and 3600 mg of Neurontin daily. :-) Anyway, moral of the story is: examine and then you might be able to treat. It might be serious, might not. Sure they cannot cure most of these things and often can only treat basic elements of the symptoms and then you do the rest, but isn't it worth the try?

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Hi,

It's so nice of you all to encourage me to continue my quest for answers and a better treatment.

I am starting to realise more and more that I probably have another problem besides POTS and NCS. I have checked with some members of my family who faint and they don't all have muscle weakness (some do). Some members have muscle weakness with no POTS and NCS symptoms. I am the only one in my extended family who paralyse. Dr Goldstein told me that I was his only patient with paralysis and in Canada I am also the only one (with POTS and NCS).

The specialist I saw the other day told me I am a very interesting case (this means I have a rare problem)! He seems to be scientifically interested in me. I can't wait to get tested and hopefully get better. I find it hard (sometimes/or often) emotionaly to be "rare". It's difficult to get answers and treatment, etc..

Thank you so much for your support.

Ernie

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ernie,

please continue to keep us posted on things.

i am glad that you found strength here...

you always take the time to respond to everyone else...so now it is your turn to soak in the warmth! :)

it is hard to keep fighting with the medical world and getting more tests and trying new things! i hear you though...i went to see a new pots doctor and i was so excited! i thought, i never thought i would be in this position...or in the position where there isn't a local dr. who has a clue...i am that much of a mystery.

oops, rambling...

emily

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i posted, but it didn't go thru and it was such a good one too. dang, lol. i don't think the government spends nearly enough on us and if there's a chance they can find something and go oh me oh my, and then want to do more then go for it girl! who knows what the ripple effect could be! morgan

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