Old 09-08-2015, 04:30 PM #1 (permalink)
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Default Confused and scared by doctors need feedback please

Hello all,

Firstly I wanted to say that I read your note to new members and so I believe what I am posting is legitimate (though I would love for you to tell me I'm being crazy, I'm not longer sure of this). I have been reading these forums for months now and am only just posting because I am finally beyond myself and truly feel my body changing. Okay here goes yet another long ramble from a scared person and I am really sorry in advance if it jumps around a lot and sounds crazy...

The Symptoms:
A year ago I noticed I was simply fatiguing during exercise quickly, thought nothing of it, but no matter what I did, this feeling of fatigue accompanied me (especially while rock climbing- I used to be a big climber) and my legs always felt stiff (I'm also a dancer) and wouldn't go away, and my balance started to become worse. Then I started noticing tremors in my hands. Next came the fasciculations, by this time I had started searching on my own because I was getting no answers and yes-- the internet lead me here and so the true terror set in. Then i noticed literally every joint in my body would shake from doing simple tasks. And then my left hand started to have trouble typing.

This was all in the last 6 months. This week (after a second round of antibiotics I must add) my balance is really off. I mean I can feel myself waving around, and my butt is sore from standing because I think I'm working harder, and my legs shake when I try to walk a straight line (I can walk the line though). Today (after many doctors) I saw a new GP who said my leg reflexes seemed above average and the reflexes between my arms didn't match. I am now terrified, however now let me explain the doctors before this one....



The Doctors:
There were many hypotheses from my doctor and an enormous amount of blood tests done. Nothing came back. I spent months taking supplements and they had no effect on my condition. This is where I am going to ask for your patience in reading the entirety of my experience because I did go to a neurologist whose specialty is MS. I understand this man has had years of medical training and would know ALS when he sees it. He performed the regular neuro exams and said I looked okay and diagnosed me with BFS and an essential tremor and maybe chronic fatigue and sent me on my way.

Everything just kept getting worse and so I decided to seek a new neurologist who would give me an MRI and EMG just to rule out my fears. Unfortunately this doctor immediately read my other doctors notes and felt I was being ridiculous. I need to say, and I'm sure you've heard it before, that these men both treated me like a hysterical woman and did not take my fears seriously, offering little explanations or guidance. The second neuro said he expected my EMG to come back dirty and to show carpal tunnel syndrome in my left hand. My MRI came back clear of any lesions, and the doctor didn't discuss my EMG results, just said "yup, looks normal to me!" said I had the same thing as the doctor before him. the results said I do not have carpal tunnel (there is NO PAIN involved in this). I finally got my EMG results and obviously I cannot really understand it but it looks to me like there are discrepancies between my two arms/hands that the doctor chose not to disclose. These results do say that the study revealed no evidence of peripheral neuropathy or cervical radiculopathy. Said I did show a tiny bit of disc degeneration in my cervical spinal area but apparently nothing to be alarmed about?

Physical therapy was recommended. I've been doing physically therapy. The thing that really scares me now is this new doctors comment about my legs and arms, and the fact that I feel my balance is way off and I have to work harder to maintain it. I do not have any signs of true muscles weakness though.

Please, does anyone have any thoughts? I am so confused and now back to be so scared.

Thank you so much for reading.

-Red
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Old 09-08-2015, 04:56 PM #2 (permalink)
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Default Re: Confused and scared by doctors need feedback please

It doesn't sound particularly ALS like to me. Reflexes are often brisk if you are nervous and are very very examiner dependent.
Perhaps if you cared to share the discrepancy you felt you saw in your emg report we could comment on that
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Old 09-08-2015, 06:55 PM #3 (permalink)
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Default Re: Confused and scared by doctors need feedback please

Hi Red,

Iím sorry to hear youíve been stressed out for a very long time. Itís not wise to lurk here too long; you might become what you focus on! You donít have ALS and youíve been worried about it for far too long.

Looking through all your symptoms, not one thing stood out as being like ALS. I understand the Internet lists many things as symptoms, and they are, but there are nuances that I think only people familiar with ALS understand. I agree with Nikki (sheís really smart on these things). Your symptoms just donít say ALS to me.

I understand your comment about being treated like a hysterical woman. My wife (RIP) was a doctor for over twenty years and told me quite a bit about those problems.

But your experience with those neurologists is still important. They would know ALS, and they both sent you away. They certainly wouldnít put their licenses on the line and send a dying person walking away.

It might worry you that they didnít review your tests in detail with you, but there might have been a reason for that. Over the nearly 20 years we were together, my wife taught me a few things about doctor-patient relationships. First, they often donít tell us what theyíre really thinking because we wouldnít understand it anyway. Second, they donít tell us everything theyíve seen in the tests, because they donít want us to worry about stuff that doesnít really matter. If the tests showed stuff that needed to be worried about, they would have recommended doing something about it.

Certainly, if you donít trust those neurologists, you could go to a world-class specialty clinic. But I donít think you need to.

I understand todayís visit with the GP got you worried. But more importantly, was the doctor worried?

As Nikki said, you could share your EMG results here. We have a couple of people who could comment on it. In the meantime, I wouldnít worry about ALS.

--Mike
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Old 09-14-2015, 01:48 AM #4 (permalink)
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Default Re: Confused and scared by doctors need feedback please

Thank you all so much for taking the time to read and respond thoughtfully. I cannot tell you how much it means to my disheveled mind and spirit to hear your feedback (though I'm sure you have a sense). I will post those EMG results tomorrow, tonight I'm going to try to get some rest and take comfort after getting what feels like a huge vote towards my health from you! So glad I finally posted-- at least the Internet has finally given me this! And you're absolutely right about showering for answers.

Hugs from one thankful stranger to some awesome strangers

-Red
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