Just an thought also, if it might be postural/repetitive , perhaps an expert chiropractor, they can adjust extremities too, just verify they trained/studied that.

Mine adjusted neck.shoulders, elbow, wrist ,foot, hip - whenever I had a question or new pain come up he checked it out...
I really had the best improvements with my chiro.... but i have chronic repetitive strain/TOS/myofascial pain...

Some are better than others, same as docs and PTs , mechanics,plumbers etc on and on..:D
always are some very good ones and then not so good ones..


Thumbs - De Quervain's tenosynovitis?? was that checked for? that was one of my first dx when all my RSI/TOS stuff started..https://www.google.com/search?q=dequarvin&gws_rd=ssl

Maybe you should look for a Physiatrist, or rehabilitation physicians, are nerve, muscle, and bone experts who treat injuries or illnesses that affect how you move.
https://www.google.com/search?q=dequ...#q=physiatrist

Would a good orthopedic help? I've got a tip from my physio, a friend of his is apparently a good ortho and a spine surgeon, my physio told me to see him. Well, I wonder if that makes sense at all.

Dental titanium
 

A few weeks before my situation deteriorated, I've had a dental semi-implant, from titanium, inserted by my dentist. Could that be an issue? I so hope not.. he did a good job.

I will need to have this titanium removed and replaced by zirconia, which is safe?

Hello aneczka,

As well as posting here about the dental implant, you could perhaps also ask members on the
Dentistry and Dental Issues Forum

take care

I assume you had your blood sugar and B-12 levels checked? You may want to see a corrective chiropractor. I believe they will understand the spine much better than a typical MD. If you are in southern CA go to John Begman.
Ron

Thanks Beatle I brought one a while back but it was actually a workout. It just showed you the moves. I'm going to try YouTube.

[QUOTE=aneczka;1103605]I have no family history of neurological diseases. My symptoms are very troubling, I can't lift my right hand and my both thumbs at all and it has progressed, there is big muscle atrophy, so yes, I do get upset when a doctor tells me he can't do anything without a proper check, or re-check. I will try to get my old clinical results from 7 years ago, because, maybe, something was missing, badly interpreted, or overlooked.

aneczka
You say your clinical tests results are from 7 years ago. Does that include the emg/ncs that were "normal" back then? Maybe its time to have those tests done again. My Neuromuscular Doctor/Neurologist repeated my tests two years later to see if there was any progression or a difference in results. Sounds like you need more testing done. Did they tell you your polyneuropathy was Idiopathic? Sorry your going through this, neuropathy sucks!!

I'm going to have EMG done again, in a university clinic here. I will also have my old readings from 7 years ago some time soon. Now, unfortunately, I've noticed I do have fasciculations in my legs also, I guess I just suppressed this information and didnt want to think about it. Anyway, I will have EMG on hands and legs.

They didnt actually tell me anything back then. "we dont know what it is, probably a local lesion which will go away on it own, but if it gets worse, come back to us". That was not helpful at all.

How can I stop any possible inflammation? I've got naproxen pills, are they any good?

I just looked at Dr. Lam on YouTube. I'm going to try it but I'm laughing at myself thinking I'm never going to remember how to do these steps!:eek:

chiropractic
 

i was losing feeling and functionality in my left hand and arm. for me, chiropractic worked very well. i was frankly quite shocked it did anything at all. there was nerve damage i was unaware of that did not show up on anything.

your mri
 

I would get your MRI reports and look at them yourself. I got mine and would search the terminology on the websites. You always should get copies of every test. I was told when my back went out nothing was there. I got the report and was what is he talking about--I had all kinds of degeneration and bulging discs. I found out later that I had a slipped vertebrae which someone told me later that is the report but you have to know the terms. The dr never mentioned that either!!

Spinal stenosis can cause a lot of issues and disc degeneration. I have arm and hand pain all the time from this from my neck. Oh I too have muscle wasting in my hand which a dr said can be from the neck or the ulnar nerve I have pinched somewhat.

What did he do? I'm not sure what a chiropractic is at all. I just know physios.. and doctors.. (would rather not)

There is another problem with MRI's. It's difficult to get them done in a standing position, which might show where the problem is, if there is one.

This is exactly right, according to John Bergman, and it just makes sense. Your spine will be different lying down than standing or sitting. But all MRIs are taken lying down, as far as I know.
Ron

there are places that do stand up mri's

my old readings
 

Hi, I've just got my old test results from 2006. MRI both with and without contrast agent, done on the entire upper body part including shoulders and both hands, found nothing. Spinal fluid showed nothing. EMG found denervation in my right hand. Vitamin B12 was at 352 ng/l. Was that too low? The doctors didn't bother with that and suspected plexus neurosis or neuropathy.

As for other results, Natrium was on the lower reference end.

I've found a new, good GP, she has a lot of experience, and she teaches at the university here. She spent 45 minutes with me, asking a lot of good questions. She did think about potential B12 deficiency herself. She has seen someone with similar symptoms caused by B12 deficiency, a woman misdiagnosed by neurologists, whose both hands were damaged, so she ordered me to have a B12 test, which I'm gonna do next week. I feel I'm in better hands now.

Aneczka

Not sure if this would apply to your issues but I was able to get my local hospitals imaging dept. to do a mri with "extension & flexion" images of my neck and mine showed "near abutment" of the spinal cord at 3 levels....which I believe is causing my pain especially at night when I sleep.
I was told that typically those images are done on CT scans......found this protocol by a rheumatologist site who treats Fibro patients and he discovered that many of his patients had compression of their spinal cords that caused many of their symptoms.......it is interesting that this imaging is not a typical protocol.....why does it take a patient to have to discover what is possibly causing their issues ??

chloecasey

Because many doctors became doctors only because their parents wanted them to? It looks like. Thanks for your input Chloe, I will keep it in mind. Maybe I should go and see a good orthopedic? I was planning to, but cannot do it all in one week :( Anyway, I will keep that in mind.

Like those doctors years ago who told me to take antidepressants, without doing any blood test whatsoever. I am severely damaged now, because they didn't bother to check properly.

Thanks Jo*mar, I will look into TOS also. But right now I have blood work to evaluate this week, discussing b12 shots with my doc (tested low in 2006), many things to do. I'll discuss your suggestions at some point probably with an orthopaedic and/or physio, but those people are lower on my priority list at the moment. In 2 weeks i have a visit in the university clinic here for emg and what not, I'll see what they want to test. I think I will insist my problems are limited to my upper body, who they are, so that's what they should examine thoroughly, if possible. I thought I was given a thorough MRI back in 2006, but maybe the doctors managed to do it wrong? I've heard actors so times do manage to get things wrong :-(

Hi Chloe,

I've found a place which does positional MRI (if that's what you mean) here in Greece. How did they do it for you? Did you just stand without moving, or did you move? "extension and flexion" sounds like actively moving.

Did CT scan show anything in your case?

Seen the ortopedist today. I brought my blood test results, but forgot to bring my latest MRI .. I must be tired. Anyway, he wants to see that MRI, because "I am not sure my colleagues know how to read an MRI". Makes you trust the doctors even more than I do already, ugh. And "I dont recommend standing MRI because it's too much, it wouldn't show something which doesn't show up on a normal MRI. It doesnt make sense for the upper spine anyway." Ugh? Too much? But his both hands are working, mines are not...

aneczka,

There is an article written by Dr. Andrew Holman of Pacific Rheumatology Associates...the article was written in 2008 however when I corresponded with him, he stated the protocol for how the MRI is done is still valid as what was done then.

When you do you search, type in "Andrew Holman and positional cord compression" and numerous sites will come up...click on the one titled " 2008 J Pain PC3 article-Pacific Rheuatology Associates Inc. PS....", this explains the information on his research of treating actually Fibromyalgia Patients and how it was discovered that MRI's done showed compression of the spinal cord done on flexion & extension views not seen on neutral position views.....these results were calculated based on a measurement that would be done by radiologist when they review those images. Table 1 will show the protocol that should be followed by.

When I had mine done I was laying down and there were cushion & pillows placed under my upper back to raise that area so my neck & head would bend back for the extension images and pillows placed so I was able to push my head to my chest comfortably for the flexion images. My report results did not show the "measurements" done by the radiologist so not sure how the accuracy of the findings relates other than "near abutment" sounds like a possible problem to me!

Have started seeing a Doctor close to where I live here in the U.S. as Seattle, Wasghington is not close to where I live. He is also a Rheuamtologist as well as an Internist & Pain Managment Doctor. Just had an EMG done of my legs and the Neurologist, in the same office, saw no pheripheral neuroapthy or muscle fiber disorder....I feel he needs to see my MRI images & report because I really think that there is something causing my symptoms that is related to possible cervical spinal compression......when I brought that up to him he did not seem to be really interested..... just might have to go through the Rheumy, he is a bit more receptive to listening to my concerns.

Hope this info helps for your situation

chloecasey

Thanks Chloe, that sounds interesting. The orthopedist I've seen today was very skeptical and told me whatever there is, will show in a good, standard MRI (which sounds counterintuitive to me. I've come to mistrust doctors, unfortunately). He just believes in his 3 Tesla machines. (My scan back in January was done probably with 1.5 Tesla). Anyway, I will call that center, which does those unconventional MRI's and ask them how they do it, and will have your description in mind. Thank you.
And if that somewhat arrogant MD I've seen today will not prescribe the positional MRI, I should get it from my genuinely sympathetic GP. I will need a doctor's letter to have it done, I believe.

I actually had mine ordered by my GP also.....after reading the report to me initially he said it was over his head and referred me to a neurosurgeon who basically said "not anything that could or should be addressed surgically and also said can't give you a new spine !!!, yea he was arrogant too!!."

Scary when they can't or won't think outside the box !! Patients have been known to be correct about their gut instincts....keep on pursuing yours !!

Best to you chloecasey

Dr Holman has put together a website on that topic. Looks very interesting. I've understood what they meant with "flexion and extension" looking at the pictures. All they need is a pillow and a normal MRI machine, plus something extraordinary: a good will and a bit of intelligence. I will see if I can find that here.

Guess what, I'm sending that link to both my GP and that arrogant MD. Here it is http://www.positionalcordcompression.com/

There is also another one, which I'll send them both also: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3587072/

It's amazing how the doctors can't solve your problem, yet think high about themselves. If you can't solve my problem, you are just not good enough of a doctor, or you need to learn more, end of story. We should apply the same measure we do apply to call center workers: if you can't fix my problem, do a thorough search and educate yourself (I worked in various call centers for a few years, and the attitude "I can't help you, but I still know it all" was simply out of question).

Glad you were able to find that other link, as it is more current.....and thats great that you are taking the "bull by the horns", if you are not getting the answers from the ones that are supposed to be trained & educated & willing to "think outside the box" then yes you need to be our own advocate!

If you take the time to read any of my past posts, you can get the idea that I have dealt with more than 1 arrogant Doc who just wanted to pass me by....prior to 4 years ago or so I never had issues with my health.....after the 3 surgeries in 2011 it has been a struggle to be positive however now I am trying very hard to go "with the program" and follow this Docs advice.

Look forward to seeing if the info I relayed to you will be something your docs will be willing to investigate and if it may help in your diagnoses.

chloecaey

I will have that flexion&extension MRI done; I've also got a referral to a hand specialist, because the spine doctor doesn't think there is anything wrong at all with my spine, judging by the normal MRI, there is not a hint of anything abnormal. The hand specialist will most probably want to see my EMG also.

Has anyone here found any real help from a hand specialist? What can they do?

Hi,

I'm translating my diagnostic results from 2006 (as they are in German), and wonder if I could post them here, or send someone? I would love mrsD to have a look on them. Also, they have found a "Proportional disturbance of the blood-liquor-barrier", this is translated literally from German. I don't know if that's the same as blood-brain-barrier. And I don't know if that's significant. Can anyone help with that?

You can try... can't make too many promises however. ;)

Things can be very different in Germany... they have lots of drugs there that we don't have here, for example.

I don't want to really convert all figures from SI units to conventional either...that can take a long time doing. But I'll glance over them. If there are ranges provided that would help.

Thanks, I will send them to you when ready.

I will just paste their conclusions from two EMG tests:

1 test:
Elektrophysiol. findings: Neurographically, regular sensory and motor potentials in all examined nerves of the upper limb. In EMG only in the muscles supplied by the radial nerve there are signs of chronic neurogenic alterations without evidence of pathological spontaneous activities; no fasciculations demonstrated reliably in EMG.
Conclusions: Suspected chronic neurogenic damage to the muscles supplied by the right radial nerve; no reliable evidence of plexus lesion or radiculopathy.


2 test:

Elektrophysiol. findings: EMG found only in first dorsal interosseous muscle one-time path. Spontaneous activity in the form of PSW, here (also, presumably, in M. abductor pollicis brevis right) also short fasciculations; furthermore, slightly increased polyphasic rates in all examined muscles, increased amplitudes of the MUAPs and reduced interference pattern (at partially submaximal tension).
Conclusions: Also in the hand muscles supplied by the ulnar nerve and median nerve, there are signs of chronic neurogenic alterations and a slight indication of acute denervation in this area; findings thus go beyond an isolated radial nerve lesion.

Hand specialist
 

Seen a hand specialist today. He is an orthopedic surgeon, operates also on the nerves. His initial idea was: there is no nerve entrapment, and certainly not in plexus brachialis. He wants to see my EMG to be sure there is or is not an entrapment somewhere else - gonna do that tomorrow.

Also, he thinks a surgery could restore some functionality in my right hand, but the nerves are probably beyond repair after so much time.

He confused me, saying my muscles were not wasted.

I'm getting tired of the doctors.

He also named a neurologist, who apparently takes the issue of any potential deficiencies seriously, so that might be my next point of call.