what the specialist said..

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what the specialist said..

Postby German2 on October 20th, 2014, 7:58 am

Hi,

today I had a new appt. with another neuromuscle specialist...at last weekend we moved into another home. I was a bit busy and had not the time thinking about it too much. But on my way to the hospital I was so anxious today that I was short off not going there...With every new specialist appt. I was getting more and more nervous. Now it should be the last one..hopefully. I cannot stand this any more.
So I made up my mind, not to ask too many questions, I just wanted to get out asap...I think most of you would not understand, but it lasts 2 years for me now and I am messed up with this all...In the end I just wanted to get out without the "big dx" anyhow.

Here is how it went:
I told her all my symptoms during the last 2 years, quite chronological. She reviewed a few of my former reports and told me, my symptoms doesn't fit to any neurological desease. Also not polyneuropathie. Those neuro deseases would follow a clear pattern. And she strictly would goe by this pattern. It would be more likely to have s.th. autoimmune.
Then she did me an EMG of one hand muscle which always hurts and which she thinks is a bit easy to irritate with the needle, but this would mean nothing. Then she did 2 muscles in my left leg, which is buzzing now since 4 weeks. This was clean..Strength test was normal. Walking on toes and heels, jumping on one leg, walking in a line. No reflex test done (but ok, I had several in the last weeks).
She told me "you've visited all the experts and I don't know how you managed this. You have to accept that this is not MND". The experts could recognize a MND patient by the way they came in and talk. She would also recognize that if it would be the case.
What I regarded as muscle loss in my hand could be fat loss, due to my age. And as it is also a painfull muscle loss, she said, then it is a skin nerve which is involved. And this is a different thing.

We discussed other options: Morbus Fabry (I am tested a year ago but never received the outcome). She asked me to phone again with the referring genetic institute,
Vaskulitis, which should be testet by a nerve biopsy (I was just tested with blood test. This was negative)
And Ehlers-Danlos-Syndrom (thanks to Yuliasir for the hint!!). She agreed that this could be the case because it is definitely abnormal how I can stretch my fingers and hands and skin. So this is my next trace. Appt. on Wednesday in a Human Genetic institute.

There were several questions I did not ask. For example why she thinks my former EMG of hand was ok so far (though it was not clean)...why my hand muscle could be so easily be irritated when the needle is in. I just wanted to get out with the words "no MND". And I hope asking those questions would not have changed her opinion on her conclusion.

So my message to you: There could be so many strange things going on in your bodies, like in mine. A crazy circus, really. And maybe also not so clean EMG's, too.
But the MND specialist would recognize if it's that. That is what I am told and what I have to believe...I have to work on this. Otherwise my life would go donw the drain...She said.

And now after the appt. I definitely do regret not to tell her this and that and ask this and that...That is the vicious circle I am not getting out.
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Re: what the specialist said..

Postby Yuliasir on October 20th, 2014, 9:50 am

if Ellers-Danloss would be confirmed, it could explain a lot, really. It involves joints, skin, central and autonomous nerve system vessels - many systems at the same time.
Good to hear you have No MND again.

Hope you may get better now, after a move (however I know you do not like the idea...but sometimes countryside is not so bad... time will show anyway).
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Re: what the specialist said..

Postby LKP1231 on October 20th, 2014, 10:00 am

She said no mnd and she's a specialist.
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Re: what the specialist said..

Postby Tweek on October 20th, 2014, 10:15 am

Happy for you, German... but I am not in the least surprised by what you have been told ;)

Now : Yoga time ;)
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Re: what the specialist said..

Postby mwagner on October 20th, 2014, 10:30 am

I truly wonder how many of us have Ehlers-Danlos. I'm very hypermobile on my left elbow (can bend backward), my left knee, both my thumbs, etc. And have all sorts of other characteristics (Raynaud's, IBS, Anxiety, etc.) common with hypermobility. It would be very interesting to know how many of us have this.
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Re: what the specialist said..

Postby German2 on October 20th, 2014, 10:36 am

@Yuliasir: Oh, I already enjoy countryside already. I have personally really changed the last years I realize. I don't need that huzzle and buzzle any longer...I enjoy looking in a green field when I wake up. It calmes down my irritated nervers.

@mwagner: It is discussed whether there is a smooth transition between hypermobility syndrom and eds..I have also Raynaud. Don't know what IBS is..? The Neuro was quite convinced that this is the key seeing my finger gymnastics, but lets wait and see...

Meanwhile it is so, when I lean against a wall with my left arm, my fingers get numb. Knowing that is not normal, I can be quite sure, this is not a sign of MND. I have the Ehlers Danlos appt. on Wednesday already. It was so funny to see all the pictures on the EDS website and I can almost do everything with my fingers and skin like on the pictures, f.ex. "finger snake". I never tried that before. It works :) . In one way I am hoping now, this could be the key...

And thank you all for your supporting words...
Last edited by German2 on October 20th, 2014, 10:41 am, edited 1 time in total.
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Re: what the specialist said..

Postby Yuliasir on October 20th, 2014, 10:41 am

Ellers is so funny sometimes... but it might be extremely painful in the teens (fortunately mine was not) and with the age it might result in what many of us suffer from...

To MItra: at a rough estimation based on reading the site and specifically asking questions - seems like about one third or so. which is much higher than in genreal population (which is at the level of percents).
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Re: what the specialist said..

Postby Xina535 on October 24th, 2014, 8:32 am

I am also very interested in knowing how many BFSers could have that! I read it is a very under diagnosed thing!

Congrats that this is not MND - it really can't be this anymore. I know you faced many scares, but several specialists in MND checked you and you have the E-D diagnosis now, so I really hope you are able to relax slowly now.

This really interested me, regarding the fat loss.

What I regarded as muscle loss in my hand could be fat loss, due to my age. And as it is also a painfull muscle loss, she said, then it is a skin nerve which is involved. And this is a different thing.



A SKIN nerve issue could cause this? Did she explain anymore about this? First time I had heard about it. I definitely have (at least) fat loss in my right hand.
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Re: what the specialist said..

Postby German2 on October 24th, 2014, 9:39 am

No, you misunderstood this a bit. Pain is a sensory issue. So if this is involved, it would be a skin nerve...Not the muscle loss itself. I am wearing a bandage right know by the way. Could not use my left hand propperly anymore, due to pain in my wrist and top of hand..It is a pitty but I am far from relaxed because nobody knows exactly whether the symptoms are from eds...
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