Asking the experts - volunteers?

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Re: Asking the experts - volunteers?

Postby German2 on November 17th, 2014, 1:12 am

Dear Xina,

I am also hypermobile as you know and have problems with all my joints meanwhile..In my knee they discovered now also a cyst, a ganglion, a joint bruise and much more degeneration..Maybe it is the explanation for us both...?
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Re: Asking the experts - volunteers?

Postby Xina535 on November 18th, 2014, 3:23 pm

I did read that hypermobility can cause nervous system issues, and can cause serious ones. I still don't know why or how exactly though...

Just a question, if you are hypermobile in one area, does that mean you are hypermobile everywhere, or that it will spread to other parts eventually and the symptoms get worse in other areas?
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Re: Asking the experts - volunteers?

Postby Yuliasir on November 18th, 2014, 4:01 pm

Xina,
normally hypermobility does not cause SERIOUS issues to nervous system as it does not affect nerve tissue. It only is known to be associated with the high risk of anxiety or obsessive disorder. I mean no MND of course.

You may be hypermobile in several joints only, and usually it does not expand. You may not notice that this or that joint is hypermobile, or one side would be less mobile than another. But hardly it could progress (at least on my own experience)
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Re: Asking the experts - volunteers?

Postby Xina535 on November 18th, 2014, 4:07 pm

Thank you. Sorry, when I said serious, I did not mean MND or deadly. I meant like people can have much difficulty in day to day life.

Good to know about that one joint/area does not mean it's everywhere.
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Re: Asking the experts - volunteers?

Postby Yuliasir on November 19th, 2014, 12:32 am

only difficulties associated with high anxiety :))) which is treatable
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Re: Asking the experts - volunteers?

Postby Xina535 on December 4th, 2014, 11:48 pm

Hi everyone, I am back and am bringing Panic with me. Apologies for the grammar mistakes, I am writing from a German Keyboard that automatically capitalizes words.

My Hand is worse. The weakness is more and more noticable. When washing my hair, trying to grip my hair to squeeze out the Soap and water, my Hand just slides down. When typing, I'm more and more off. When I grab anything , my Hand is somewhat deformed with the grabbing, like as if my thumb is just hanging there...hard to explain that one. I was flipping through Pictures and couldn't really do it right, was clumsy. Anything I pick up is much heavier and unstable than when I use my left Hand (and I am right dominant).

Besides that, I get the twitching in my Hand, like anywhere else, it will twitch in one area just for a second and then move to somewhere else in my Body. My twitching was way way down until I had my recent gastro upset incident. Now it's back like before, every couple seconds, somewhere in my Body is twitching.

Also, my thenar on the Palm side vibrates or pulses, weird Feeling/Sensation and my wrist hurts at times. When I put on my brace, it helps with everything. I don't notice any of this stuff.

I've been good. I've been thinking, "Yep, this is all related to this cyst and wrist instability, been dealing with this since April" (although the symptoms are getting worse), but now I can't hold the fear back any more and am scared with this gripping Business!!!!

I read that Ganglion cysts causing weakness is OCCASIONAL and RARE, so I can't help but think that something else is going on...
My surgery to remove this Thing was pushed out to 13-Jan due to my gastro issues and the Holiday season and I don't know HOW I am going to survive until then.
My neuro appointment was scheduled for this Monday, but due to more gastro testing scheduled on Monday and the Holidays, that was rescheduled to February. I Kind of do like having the neuro visit scheduled after the surgery though, in case function is (further) affected.

My questions right now:

If this progressing weakness were due to ***, then:

Would my CK Levels be normal, like they were when I was in the Hospital a few days ago?
Would the brace help the symptoms (meaning, do braces help patients with *** at all)?


If this weakness is truly due to the cyst, then WTH? Could this be causing real permanent nerve damage? Or would I expect that after the removal, my symptoms would improve? Should I be seeing someone as an "acute" case now?


Remember, I had an EMG which was clean, back in May, BUT it was only performed on my left calf and left upper arm, and according to many, if it was not done in my right Hand directly, then the clean EMG does not really apply. All nerve conduction testing was normal. Also, my Hand does not look any different than from the Pictures I've posted/sent on here before. The dent is not deeper or anything.
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Re: Asking the experts - volunteers?

Postby Yuliasir on December 5th, 2014, 12:30 am

Xina,
in ALS noting helps, really. Braces can help for certain mechanical traumas when weakness is caused by local nerve compression. Braces relieve compression and may help to hold the wrist in right position.

Should you have paresis caused by ALS, which is irreversible and usually associated with massive musculature degradation, your CPK hardly could be normal. Usually in such cases it is tens and hundreds times higher than normal.

If your cyst compresses the nerve, then it is a case for all issues.
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Re: Asking the experts - volunteers?

Postby Xina535 on December 5th, 2014, 12:12 pm

Hi Yuliasir, thanks for writing.

Question - here,
Braces can help for certain mechanical traumas when weakness is caused by local nerve compression. Braces relieve compression and may help to hold the wrist in right position.


did you mean when this happens in ALS patients? Are you saying that if a brace helps, then that points away from ALS?

Also, so if this cyst is pressing on my nerve and causing these symptoms in my hand, then can this be causing permanent damage as I am typing this?

Can I also clarify the lab test? My CRP (c-reak.Prot.) was really high. Normal range is 0-0,4 and mine was 8,69. But my CK was in normal range of 90 and 64 and the normal range is 0-170. CKMB was 12, and the range is 0-24. I do not see a "CPK" on my lab test. I just want to make sure I am talking about the right lab test.
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Re: Asking the experts - volunteers?

Postby wjjw on December 5th, 2014, 6:05 pm

Xina535 wrote:My CRP (c-reak.Prot.) was really high.

I wonder if a study would confirm that an obsessive fear of having a fatal disease could increase CRP? Sorry, but I just can't read your posts anymore.

Cheers,
Bill
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 Ghayes420 on December 6th, 2014, 12:48 am

I am with the wise one wjjw. The obsessive fear will increase your ED levels and decrease your ASS levels.

Bill, good to see you still sending those positive vibes from the parallel dimension. :)
A very proud fasciculator since 8/14/2011. :)
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Re: Asking the experts - volunteers?

Postby Yuliasir on December 6th, 2014, 1:56 am

Xina,
braces can help only in case of mechanical damage. If it helps you, then it means you really have that type of trauma.

I do not know if cyst will damage your nerve permanently or not. Usually mechanical traumas are all reversable to a certain degree.

Well, as for CRP you may google and then you would know it is an indicator of inflammation (more specific that ESR). Pretty normal I think to have elevated CRP if you have inflammatory gastro disease.

regards
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Re: Asking the experts - volunteers?

Postby Xina535 on December 21st, 2014, 3:28 pm

I wanted to thank you Yuliasir for responding without attacking my lack of knowledge and my obvious unstable mental state/health....and for always providing consistent non-judgemental support. As you know, I hadn't googled and barred myself for a long time from that, and did not know what CRP was, I obviously mistook it for a muscle value.
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Re: Asking the experts - volunteers?

Postby Yuliasir on December 22nd, 2014, 2:16 am

Sorry Xina, forgot about your non googling strategy... :(
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Re: Asking the experts - volunteers?

Postby Xina535 on December 22nd, 2014, 11:43 am

yea, it is for anything related to ALS. I just stuck to this board. I've let up on that a Little, where I have been looking up the Herpes Information. I'm not as Panic-stricken lately....but it will happen randomly here and there. Each day is different.
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Re: Asking the experts - volunteers?

Postby German2 on December 22nd, 2014, 11:45 am

Hi Xina,

hope you are ok...? Nice to hear from you! I had also an MRI from my left wrist. They found nothing special but a ganglion. But they are telling in the report it is "blande" which means without any effect. So as far as I understand it is not responsible for my wrist pain. But one never knows...Hope you can have a good Christmas!
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