Asking the experts - volunteers?

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Asking the experts - volunteers?

Postby Xina535 on October 16th, 2014, 10:10 am

Hi -

I haven't done this before, but I finally gave in and spent 30€ on one of those "ask the expert" sites. A Neuro answered my questions, and also saw a couple of my pictures.

I do not want to post what he said because it freaked me out and I don't want to freak anyone else out.

What I would like to do is ask if there is a senior or expert member on here who would be willing to read the questions and this neurologist's answers and let me know what they think, via a PM on here. I have the ability to ask the neuro more questions on what I wrote to him/her, so it would be very helpful if I can get some advice.

Thanks in advance!
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Re: Asking the experts - volunteers?

Postby Yuliasir on October 16th, 2014, 10:26 am

Xina,
I am not the expert of course but at least I am not freaked out and at least my perception would be definitely more critical. so you could pm me if you want.
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Re: Asking the experts - volunteers?

Postby wjjw on October 16th, 2014, 10:41 am

I qualify as a senior (I'm old) and hate to see people needlessly freaked out, and can't imaging what could have been said that scared you. If I can help feel free to PM.

Cheers,
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A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Asking the experts - volunteers?

Postby Xina535 on October 16th, 2014, 10:45 am

Thanks both so much! I've PMed you.
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Re: Asking the experts - volunteers?

Postby RIno468 on October 16th, 2014, 1:04 pm

I can assist too if you need more volunteers.
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Re: Asking the experts - volunteers?

Postby TwitchyDoc on October 16th, 2014, 2:06 pm

Xina, as a medical professional, I would be happy to help.

One thing - do not trust much these doctors. Do you think that a sucessful medical doctor needs to earn some money by answering questions online? Typically the answer is too vague and contains no more than you could find in google books, for example. I bet he is not an ALS specialist - I would be very surprised if an ALS specialist was answering online. My point is - do not trust much in what he told you. I was told by a member of this site that it is not ethical to answer questions without physical examination..and these guys do the same and in addition, charge you..trust me, whatever BFS related requires a specialist, not a general neurologist who need some money...
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Re: Asking the experts - volunteers?

Postby Xina535 on October 16th, 2014, 2:46 pm

Very good points!! I did think of a couple of those points (not all) but part of me just said, "do it and see what he or she says." I also thought that maybe they do it on the side? Then I also thought that since I could send a picture, they are open to looking at what's wrong. I paid so much already, what's 30€?" I learned my lesson about googling before, but when I did try searching subcutaneous fat loss, I couldn't find much. Thank you, I won't do it again, but I'll send you what he did reply with.
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Re: Asking the experts - volunteers?

Postby Xina535 on October 16th, 2014, 3:01 pm

Sorry, I realized the link did not paste/copy correctly in my PMs

This is it - what I sent to the "neurologist"

https://roxythegray.files.wordpress.com ... /thumb.jpg
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Re: Asking the experts - volunteers?

Postby Bibi on October 17th, 2014, 10:51 am

Hi Xina
I am not an expert , but if You have athrophy in your hands i also have it !( and my neuro dont Think i have ) The neuro told me to put my thumb in to my hand and even that if i have skinny hands there comes A " bubble " , he told me to look at that area , You Will be flat here if there is athrophy .
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Re: Asking the experts - volunteers?

Postby Andreas on October 17th, 2014, 12:54 pm

Hi Xina,

I am down myself at the moment due to my new symtoms but I looked at your picture.
I have very big dents on both Hand on the same point as you. My dents are MUCH deeper than yours! I will post a picture of my Hands soon so that you can see mine.
My neuo said that this is normal for some people and it is a result of muscle-proportion. Maybe my hands look ever like this but as I realized that this could be atrophy it maked me feel bad so i decide to show it to my neuro.

Since I have BFS I have fat loss all over my body and dents appear even on new parts. But the dents dont make me worry again because I know that this is fat loss an not any atrophy.

Andreas

Here is my pic, hope it works:

http://s2.postimg.org/ac6saqn9l/20141017_195729.jpg

btw: I have 3 Boxers :-)
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Re: Asking the experts - volunteers?

Postby RGB on October 17th, 2014, 6:44 pm

I have the same 'dents' and I am not even remotely concerned, I just don't have a lot of fat there.

'Mrs RGB' wants to know why I am looking at photos of other people's hands, not easy to explain :oops:

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My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: Asking the experts - volunteers?

Postby Xina535 on October 18th, 2014, 1:24 am

Thanks all for posting!

For your dents:

Did it develop gradually? Mine started to sink in since April. And then more and more.

Do you have it both or one side? I only have this in my right hand. Left is totally fine.

Important: do you have worsening weakness or dexterity? I do. My handwriting is affected and I have to use my left hand to help my right hand with holding stuff like my phone or it's unstable.

Also, do you have pains? My hand was hurting so bad last night. Combo between burning and soreness, in random spots. Pain comes and goes, in my wrist too.

Also noticing that I can feel the extra skin or that there is something missing when I use my hand, like as if I can feel the skin flapping it sinking....hard to describe.

When I looked at MND pics of hand atrophy, none seemed to have these veins over the thumb/snuff box sunk in issue. So I am reassured by that a bit.

I'll deal with all the pain and sunken in fat dents in the world, this weakness is making me flippppp!!!
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Re: Asking the experts - volunteers?

Postby Xina535 on October 18th, 2014, 2:57 am

One other thing I mentioned to Twitchydoc:

I have this other dent on the "muscle side" of the thumb. I could have always had it, but I noticed it in April. It does not seem to me to have grown, but when I push my thumb against my palm, yes, there is a bulk/bubble of muscle that is somewhat firm. However, it does slightly dip in right around where this dent is. When I am not flexing or anything, just relaxed, there is a dip of my skin sinking down, just like what's happening on the "snuff box" side of my thumb.

Twitchy doc said it does not look like MND atrophy but I should get an EMG if this hand to be sure it's ok. I have a hand MRI next week and I put the next available EMG on the books with my neuro for 10-Dec.

The "expert" on that website said that fat loss is almost always accompanied by muscle loss and fat loss is rare on it's own. That's what mainly freaked me out. Everyone via PM helped me feel way better about that, Twitchydoc thought the guy seemed "quacky".

https://roxythegray.files.wordpress.com ... hoto-1.jpg

https://roxythegray.files.wordpress.com ... hoto-2.jpg

https://roxythegray.files.wordpress.com ... titled.jpg
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Re: Asking the experts - volunteers?

Postby Andreas on October 18th, 2014, 3:01 am

Hi Xina,

the dents on my Hands is much more on the right side, left too but not that deep. I think it developed over months and now it stays as it is.

My handwriting is also affected but I cannot depend it on the dents because I have also the finger Tremors.

But I have noticed that both of my hands are not weak, but they hurt after holding stuff for a long time or things with high weight.

They are also very fast tired when I hold my phone for a few minutes.

I twitch on my hands but not common .

As a fact, BFS is pointed for me with general fatique so I try to spend not much affort of the weakness because it is never clinical for me.

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Re: Asking the experts - volunteers?

Postby Xina535 on October 19th, 2014, 3:14 pm

so far the weakness has not been clinical for me either.

the pain is so weird, it will burn in an area, then go away and later it will be sore in another area then go away.

this weak feeling though, also with the twitching and this feeling of my skin sinking in with certain movements, really really scares me.

I will post what the MRI has to say, get it on the 23rd and results on 27th.
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