Worried about where this is going - 1 year 10 mo. update

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Re: Worried about where this is going - 1 year 10 mo. update

Postby leroyb on May 6th, 2015, 7:19 am

Forgot to add Xina. I have posted details of my case on *** forums and even the members there tell me nope, you don't have it and your case is an awful lot like mine.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby misterjuanperalta on May 6th, 2015, 7:30 am

Read in another forum and this was said:

"Could be the beginnings of subluxating thumbs from deterioration of the joint in the ball of the thumb. You should see my sister's. She went on SS disability for it. I have the beginnings of it. It starts with pain and swelling first... then deep indentations and useless thumbs." I'd look into this, but do not assume MND, because it's not the case in this example.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 6th, 2015, 9:09 am

leroyb wrote:Yep I showed my hand to Dr Orla Hardiman and her assistant and they clearly saw it didn't look right but they did strength tests etc and said no mnd. Not even required to do an emg. I wanted to argue but they've seen over 2,000 cases so I didn't. I'm in touch with Gary (readytocheckout) on here and I'm sure he won't mind me telling you that he has noted atrophy all over as noted by several different doctors and he had an extensive emg recently of prettty much everywhere and no mnd. They can't explain it but they said no way mnd.

Edit: oh yes, I actually don't believe any of the neurologists i have seen and remain convinced I have some extremely unusual form of mnd



Sorry they can't explain it. Did you have an MRI of your neck/back done? And I am SO with you on your Edit comment....for many reasons.

Also, I e-mail Garry every day, a few times a day. We exchange pictures, etc. and have become buds.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 6th, 2015, 9:10 am

leroyb wrote:Forgot to add Xina. I have posted details of my case on *** forums and even the members there tell me nope, you don't have it and your case is an awful lot like mine.



LOL I've done the same thing. I think many of us have desperately visited that page and asked questions. They also told me to shut up and leave, that I don't have it. I can say more about that, but I won't here.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 6th, 2015, 9:12 am

misterjuanperalta wrote:Read in another forum and this was said:

"Could be the beginnings of subluxating thumbs from deterioration of the joint in the ball of the thumb. You should see my sister's. She went on SS disability for it. I have the beginnings of it. It starts with pain and swelling first... then deep indentations and useless thumbs." I'd look into this, but do not assume MND, because it's not the case in this example.


Interesting! I will look at this! I did not have any swelling, that I was aware of...
If you still have it, do you mind sharing the forum page/link with me? If not here, then in a PM?
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Re: Worried about where this is going - 1 year 10 mo. update

Postby leroyb on May 6th, 2015, 9:33 am

Re elbow pain: I also get pain in both elbows like I have whacked my 'funny bone' off a wall. It can last all day and is
extremely painful. Ever get this?
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 6th, 2015, 9:43 am

No - I only have this in my left elbow. I've noticed that the way I sit at work when I am reading and not typing, is right hand on mouse and left elbow on table/bent with my left hand on my face somewhere.

Exactly at this moment, there is a twinge type of feeling going on in my right thumb joint. Like a very very light version of the feeling you get when you stick something an outlet and you get electrocuted for a quick second. Now, it's over. :roll:
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Re: Worried about where this is going - 1 year 10 mo. update

Postby misterjuanperalta on May 6th, 2015, 10:47 am

I don't have the link anymore. Didn't think of saving it.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 6th, 2015, 11:55 pm

Ok, Thanks. I read a bit about thumb joint problems. I have never noticed swelling but last night it dawned on me that one of my ortho docs noted swelling. It was bigger than my left thumb knuckle. I had a hand and wrist MRI...wouldn't that have shown any joint or bone abnormalities in my thumb?

Another thing I wanted to bring to this board is this: since the herniations were found, I joined a spinal health website. There is a guy on there who has been messaging me. He said his MRI also did not show enough compression for his symptoms, but did mention similar to my MRI about "broken off components". He's the one who pushed me to get a neurosurgeon's opinion. He said it took him 3 neuro surgeons and much pushing before they agreed to his surgery. In his surgery, they found broken components pressing on his nerves that the MRI did not show, and his feeling that my situation could be similar. He's had no more problems since his surgery. And when I told him that the neuro surgeon I saw said there is no indication for surgery, he wrote me this:

"I have some Interesting news for you. There is another girl on the board that I've been helping with similar symptoms to you. She also had a hard time convincing the surgeon that she needed surgery . Finally after about 18 months of trying all other types of therapy and also keeping detailed spreadsheets about her pain level the surgeon agreed that it was needed.

When the surgeon finally got in there he not only found pieces of disc material on the spinal nerves she also had a torn tendon none of these were seen by the MRIs or other tests.

You may have to live in pain for a while before someone finally listens to you. I hope your situation gets better but my gut tells me that you are similar to me and have material on your spinal nerves."

So there are some mysterious stuff that can still be going on back there in our necks that no one may realize until they open you up. And it really mixes things up for me....
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 8th, 2015, 4:00 am

Question about fingernails...

The thumb nail on this messed up thumb is always broken/cracked looking, brittle and pieces break off easily. This does not happen to any other nail. I took pictures today and all my nails look nice except for this one on my messed up, weak thumb. (yes I am wearing a wrist brace - it helps me feel or notice the weakness in my thumb, less)

Right hand thumb nail
https://roxythegray.files.wordpress.com/2015/05/img_7148.jpg

Right hand other fingernails
https://roxythegray.files.wordpress.com/2015/05/img_7147.jpg

Left hand all fingernails
https://roxythegray.files.wordpress.com/2015/05/img_7150.jpg

Anyone know if this could be connected to what is going on in this hand/thumb? Is it maybe not getting enough blood flow or nerve signals? Any other ideas about it?
(And no, I do not bite my nails. At the most, I chew on the cuticles on the sides to chew something off if I don't have a nail file. And excuse the poor manicure, it's not really my top priority right now. This one thumb nail just chips and breaks off and always looks broken/cracked).
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Yuliasir on May 8th, 2015, 4:14 am

this is rather about a) bad blood supply, b) naik infection, also ultimately might be aggravated by bad blood supply.
Nail condition is sensitive to blood cirulation, not to motor nerve condition.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 8th, 2015, 4:17 am

Thanks - I am going to the dermatologist on Tuesday, for one of those every 2 year screenings for skin cancer and I will ask him about my nail, if it could be an infection. Otherwise, maybe it is about poor blood supply? I noticed that the palm side thenar gets reddish every now and then. I took pictures of that too, but that is even worse to tell on the pics versus real life.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby Xina535 on May 12th, 2015, 12:31 pm

Dermatologist saw it and said that my nails in general are thin and that is due to something within and should be corrected within (and not try to correct it with polishes or anything).

Another thing: I went to the hospital for acute mental distress yesterday and the doctor there advised that I am taking the wrong meds for my situation. He is weaning me off of Prozac and Opipramol and wants to put me on Cymbalta and something else that has "quil" at the end of the word starting next week, but he wants to talk to another doctor first before actually prescribing it to me. I see him again at the hospital on Monday next week, where he said he will propose a plan for me, which will include therapy, and from what it sounded like, I will be part of their "day time psychotherapy clinic" - and those patients are seen by many different doctors, and receive different tests, including labwork and neurological tests, since neuro stuff hangs together with mental stuff. I am hoping for that, since I still have no real explanation for my right hand which is getting weaker and my left arm, which has gotten better with acupuncture (overall, it is still weak), but the pain and weakness gets strong at times. Twitching like crazy in that arm. I also have swallowing and breathing trouble starting. I am attributing that to stress at this point. Other good things about that program is that insurance pays for it so no more self-pay and you do not have to spend the night in the hospital.
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Re: Worried about where this is going - 1 year 10 mo. update

Postby leaflea on May 15th, 2015, 12:32 am

Hi Xina, just catching up to this now...I have had one doctor note atrophy in my wrist and people certainly see the "wasting" appearance of the top sides of my hand when I point it out. Other docs have acknowledged what I see, but do not comment. But a NEURO told me there is no muscle in the wrist in the area where I am concerned. Another NEURO told me normal aging hands. I do believe there is something going on will many of us, something that can change our bodies, Leroy, ready to check out, etc...but evidently not mnd. Not saying things haven't changed for you. I have these "humps" on the backs of both hands. Not sure if they are ganglion cysts, but I've written about them before on this board. I find myself looking at everyone elses hands to see if they have them. They don't. They are rare. They formed shortly after bfs started and hurt or ached for about three weeks while they did. I've had issues with dexterity...all of it. I do see my very own mother has the same humps on the back sides of the wrists. Symmetrical - same on each side. She also cramps and just learned she has esophageal spasms too (she tells me while I'm sitting in the gastro office). She describes them exactly as they happen to me. These are not normal things. They are rare things. But, I seem to be like my mom...she has confirmed auto-immune issues. I don't. But there is something here that medical science just doesn't know yet. It does absolutely no good to worry about things that haven't happened and likely won't. In the meantime, it can drive us mad trying to figure it out. I'm doing better on just giving up on that and being satisfied that according to all medical knowledge available at this time, I seem to check out just fine. That doesn't mean I'm still not 100% convinced that something is happening, something is different with me. It may have been caused by stress, for sure it has caused stress. I may have bfs but I won't let it have me one more day. :-) Also, I get such sensations in the hands. They are often paralyzed in the morning, to the extent I cannot shut of my alarm clock for about a minute. I get tremors - when I least expect like while holding a sandwich out for a pleasant lunch with a friend (embarassing). These things are objective, real, and annoying at best and disturbing at worst and as far as I can tell...relatively harmless.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Worried about where this is going - 1 year 10 mo. update

Postby misterjuanperalta on May 16th, 2015, 7:39 pm

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Re: Worried about where this is going - 1 year 10 mo. update

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