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Re: Asking the experts - volunteers?

PostPosted: October 20th, 2014, 8:20 am
by German2
Dear Xina,

I have exactly the same. Alo my left hand cannot hold a fork correctly meanwhile, but my specialist of today (see my latest post) was not even interested in this. Asking whether it could be due to sulcus ulnaris she said "maybe". I showed her my small hand muscle which i so flabby meanwhile and she said "but it is a muscle with good function". And if pain is involved it would be a skin nerve....Ok, it is unsatisfying in a way. ..By the way, I have also those dents on the thumb where you do. But I guess, I ever had. Never spend a second on that before..

Re: Asking the experts - volunteers?

PostPosted: October 21st, 2014, 7:29 pm
by leaflea
Goodness, Christina, I have seen those beautiful hands in person! You are fine. You saw mine. YIKES. Ugliest skinniest old lady hands ever. I can say this is new. My hands changed appearance since the bfs started. Quite rapidly. And they FREEZE soooo easily. Like I said, I suspect autoimmune - related to Raynaud's and/or thyroid. You had high ANA which would indicate the same. Focus on some nuisance disorder, not something deadly.

Re: Asking the experts - volunteers?

PostPosted: October 22nd, 2014, 10:52 am
by Xina535
Hi All,

Leaflea - my hands have gotten worse since we met. My husband has opened up and actually acknowledged the sinking in on my right thumb/hand only.

Went over all my blood work with my doc. today. All normal. Normal thyroid levels and ANA came back negative this time.

My questions to everyone:

My CK was 60 or something in that area. This is normal, my doc. said. Question: If all of these symptoms going on in my hand, the "fat" atrophy and this weakness, was related to MND, would my CK be higher than 60? Is 60 a good value?

My stool test results came back all out of whack. I will get the official report sent to me in the mail, but I have low of several levels and a high of a certain bad enzyme or bacteria or something. Not really sure yet. Oh and it was way too acidy, she said. I am to start taking 3 different meds for like 6 months (I don't have the names yet of what, picking them up later tonight), to help balance out these good and back bacterias and acid. No parasites or things like salomanea or blood, so no real diagnosis other than way out of balance and too acidy.

I have to pay 129€ for these 3 meds and my husband and I are wondering how relevant or important these results are from the stool test. Could it be that I just ate something that night before that made me out of whack? Could it be that ANYONE who sends in a stool test will usually have something out of whack? My doc. said that this imbalance is the reason for my strong hiccups, throat issues, gastritis, etc., so she does not want to test further and wants to see how I react to these new meds. Meanwhile, I am still having all of those issues.

Any advice or experience there? Could this imbalance be what is causing or related to my fat atrophy in my right hand?

Update on the weakness - when I use my right hand to take off my glasses (using thumb and either index finger or middle finger pinching motion), my glasses drop/droop sideways downward (due to weakness and them being heavy in my pinch grip). When I use my left hand to take them off, my glasses stay straight and it does not feel hard to take them off. Now, when I wear my wrist stabilizing brace on my right hand and repeat this exercise, I feel NO Weakness and my glasses stay straight, and they don't droop. Any thoughts on that?

The elbow electric feeling stopped completely. Happened only for 2-3 days.

Re: Asking the experts - volunteers?

PostPosted: October 22nd, 2014, 12:23 pm
by Yuliasir
Xina,
CK levels are usually establisehd in each lab according to population, so you should compare this with the lab norms. But usually 60 is rather low in whatever units :) in case of mucle degeneration CK is around 10 times higher than normal level, and this is sustainable picture (not sudden spikes whihc happen after workout, dancing, infection, stressful day etc.)

Your stool results confirm some deviation in digestion (imbalance in flora and related acidity of food rests) and, considering what your doctor said, it confirms your severe gastritis (which causes your hiccups, throat issues, chest pain etc.). Nothing to do whith the hand except the fact that gastritis might be aggravated by constant stress. Of course healing gastritis would not heal your hand but gastritis is not the best ever condition, and it might result in ulcer etc., so I would say it will make your life easier.
hope this will help

regards
Yulia

Re: Asking the experts - volunteers?

PostPosted: October 22nd, 2014, 2:20 pm
by Xina535
Thank you! It really really helps me to know that there is some kind of confirmation of stomach issues and that this could cause my throat/voice issues and my right side chest pain. Didn't I read somewhere that GERD can cause twitching? Is gastritis something like GERD?

Do you have any thoughts about the weak eyeglasses droop and then it's better with my wrist brace?

Please excuse me everyone! I am really fighting my panic and anxiety with everything. This weak hand and dents are ruining me right now! Trying to stay busy, trying all relaxation stuff, baby stepping to the hand/wrist MRI tomorrow.

Re: Asking the experts - volunteers?

PostPosted: October 22nd, 2014, 2:31 pm
by Yuliasir
Well, I am not sure if acidic gastritis causes malabsorption of Ca and Mg (practically high acid content should make Ca/Mg more soluble therefore should not prevent its absorption but this is very simple assumption, and maybe therer is some ingibition somwhere in the chain. In that case one might have some electrolytes imbalance... or probably acidic pH impacts B vitamines absorption... do not know really what could be connection between GERD and general twitches.

as for wrist brace, it may be that it corrects muscle, tendons and nerve nisalignment you may have in your wrist. Therefore all kinematics comes abck and muscles are working properly. So it supports idea that your propblems are of mechanical origin, not due to neural damage.

Re: Asking the experts - volunteers?

PostPosted: October 22nd, 2014, 5:24 pm
by Xina535
Yuliasir wrote:
as for wrist brace, it may be that it corrects muscle, tendons and nerve nisalignment you may have in your wrist. Therefore all kinematics comes abck and muscles are working properly. So it supports idea that your propblems are of mechanical origin, not due to neural damage.


I read this over and over again. I hope this is the case!!!!! So anxious about the MRI and about what this could be.
Thanks also about the GERD info! I hope these meds will be good for something!

Re: Asking the experts - volunteers?

PostPosted: October 23rd, 2014, 9:10 am
by Xina535
Hi everyone. MRI was done today. And I am out of my wits because I looked at the pictures. I am scared sick but I also feel like a huge idiot for looking at the pictures and googling! I posted this today with pictures:

viewtopic.php?f=4&t=21146

Re: Asking the experts - volunteers?

PostPosted: October 27th, 2014, 7:50 am
by Xina535
I am SUCH AN IDIOT!

Freaking out for a GANGLION CYST in my wrist! That is the main finding in my MRI report. A ganglion cyst that is right smack in the middle of the back of my wrist. Can't see it, but when my orthopedic doctor went to find it and pressed on it, I screamed! Hurts very bad!

The official technical language of the findings - translated by google and my German, some words I couldn't translate or find:

1,1 x 0,4 cm septate Ganglion cyst in the dorsal wrist. Edema of the dorsal wrist capsule and general, light articular irritation with pronounced synovial fluid. Small central "Fensterungsdefekt" (fenestration defect, I think) in the discus "articularis ulnae" due to a slightly longer ulna. In this case, no evidence of a "ulnokarpalarthrose". Overall, no arthritic changes. No tendovaginitis.

My ortho referred me to a hand surgeon. He wants their opinion, but said in his opinion, he would want it removed because it's been causing me these problems since APRIL!! Pain, sensory issues and weakness in grip. I read up on these cysts and they can indeed cause this stuff.

I was so freightened of getting the results....1) if it showed any lesions or atrophy OR 2) if it showed nothing at all
I am SO RELIEVED to have an answer, you guys don't even know! I can't wait for a hand surgeon to look at it, and get this sucker taken care of!

The weakness was killing me. This weak grip and these changes of what looks like sinking in skin...without any explanation.....that was driving me NUTS! thanks to everyone who virtually comforted me and put up with my madness.

Re: Asking the experts - volunteers?

PostPosted: October 27th, 2014, 12:11 pm
by Bibi
Congratulation Xina ! I am so happy for You that You now have a very good explanation !
Bibi

Re: Asking the experts - volunteers?

PostPosted: October 27th, 2014, 12:56 pm
by German2
Wow Xina, this is really good news!! Congrats...
I am also wearing a wrist band meanwhile due to pain in wirst. I saw a hand-surgeon today and he had no idea. He said functionally there is all ok. It lastet about 2 minutes and I was out again....So your new explanation is very good!
You don't have to think about sinking areas and worry..

Re: Asking the experts - volunteers?

PostPosted: October 27th, 2014, 1:32 pm
by Yuliasir
so good to see you have and answer!

Re: Asking the experts - volunteers?

PostPosted: October 27th, 2014, 3:21 pm
by Xina535
I know! I am so relieved and happy. Weird that I could be so happy to have a cyst!
But a cyst was the LAST thing , or was not even a thinkable thing that I could have going on there. Ok, now when looking and comparing the two wrists, yes, there is slight hump on my right side, but I never thought that was something, as we know there are so many bones and stuff, and one side is not like the other, so I just thought it was something like that.

WHEW!

Re: Asking the experts - volunteers?

PostPosted: November 16th, 2014, 9:31 pm
by Xina535
Update here: the hand surgeon set surgery for 2-Dec to get rid of the cyst.

He then said this: "the cyst is not the only problem. Your hands are hyper mobile but this thumb, I should be seeing a tendon here in your MRI and I'm not. I am ordering a movement X-ray. Bring the pictures with you to the surgery and I will be able to tell if I need to repair any tendons."

Heh?? Where did my tendon go?

His report mentions hypermobility and a "click-phenomomen" ...in my wrist when he moves it a certain way, it clicks. Kinda hurts.

I just asked him if this meant anything bad or serious, he said no. Relieved by that, but my brain is off thinking and worrying...

Re: Asking the experts - volunteers?

PostPosted: November 17th, 2014, 12:37 am
by Yuliasir
if you could still move your thumb, the tendon is there and the problem is just MRI quality or interpretation of scans. Or maybe the tendon is changed in quality (as it could be expected for hypermobile people) so it has approx. the same intensity as soft tissues nd could not be clearly determined.