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Posted By : tiredredhead - 7/6/2017 7:35 PM
I'm hoping someone here knows about a treatment I am scheduled for in a week or so. My neurologist has determined that I have nerve damage in both hands. I have loss of sensation, pain, and my hands fist up if I do not consciously force them open. I have 3 MRIs sceduled and when I go in for results, he wants to do a "nerve rebuilding " treatment on my hands. Which involves immersing my hands in water and some type of electrical currents. Needless to say I am a fair bit freaked oit by this. Not that I won't try it, I want to keep ise of my hands. Anyone have any experience with this?

Sarah

Posted By : Alcie - 7/7/2017 2:46 PM
What is the cause of the nerve damage? There are some claims of nerve regeneration for some conditions.

I wish I could get something for my spinal condition, but none of my doctors has mentioned any cure.

Posted By : (Seashell) - 7/7/2017 4:05 PM
Tiredeedhead:
What is the exact nature of your "nerve damage." I think you deserve a more thorough explanation from your neurologist than "nerve damage."

Peripheral nerve damage is viable to nerve regeneration and repair. Peripheral nerves are nerve extensions that have exited the spinal cord. Peripheral motor and peripheral sensory nerves that are damaged are able to regenerate under optimal conditions (ex. no constricting scar tissue, no overt tissue or bone blockage along the route of the nerve).

The rate of repair of a peripheral nerve is very, very slow. about one inch per monnth.

How far the nerve has to regenerate is also an important variable. A nerve that has a long distance to regrow has a more bleak prognosis of full or partial recovery. Ex. A peripheral nerve injury in the brachial plexus of the upper arm will have a lower potential of success in regenerating the distance to innervate the hand.

Be aware of snake oil treatments and scams. I know of no underwater therapy with ultrasound or electrical stimulation that is able to speed peripheral nerve regeneration. I would want to know exactly the treatment that your MD is proposing and clinical studies or professional journal reviews that substantiate any claims of facilitating recovery. Electrical stimulation of the damaged peripheral nerve is helpful in making sure that the nerve "remembers" how to transit impulses and is of benefit in keeping a damaged peripheral nerve functional and viable while recovering. However, such treatments will not accelerate or speed up the re-growth process.

1 inch a month is about as fast as recovery can be expected. Recovery is also predicated on the nerve's ability to find its way along the path to its distal innervation site.

The grim reality is that nerve regeneration is often one in which the nerve loses its way (it does not grow in exactly the direction needed) or is hindered in some way along its journey (scar tissue is the most common physical obstacle).

I would ask your neurologist to help locate an occupational therapist with specialty in neuromuscular hand recovery. The making of soft splints during the healing can be advantageous as well as electrical stimulation to the nerve root over time. An OT hand therapist can provide and monitor peripheral nerve recovery.
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Post Edited ((Seashell)) : 7/7/2017 4:08:10 PM (GMT-6)


Posted By : tiredredhead - 7/7/2017 4:21 PM
My neuro isn't quite sure "why" yet. I have 3 MRIs scheduled Monday. Brain, neck, and back. I go in for those results 9 days afterwards. He said when I come in they will do the nerve rebuilder treatment and was talking about water and current. My EMGs on my arms were pretty good. He suspects the hands and jaw pain i have come from my neck. That's all I have gotten out of him so far.

Sarah

Posted By : straydog - 7/7/2017 7:13 PM
Hi Sarah, if I am remembering correctly you were referred to a neurologist for possible MS. Is this neurologist thinking no to that possibility?

Many years ago I read an article about something similar to what you are describing he has suggested with your hands. This was strictly at an experimental stage only. Since then I have not heard whether is was something that would later be approved for treatment.

I do know you are desperate for some help, however, I would read what Karen has written above about the proposed procedure. Something I would have to ask the dr is where can I read about this, how many of these procedures has the dr done & what is the success rate & how long has he been doing them. This would be very important to me before agreeing to anything.

The explanation on the EMG, he should have been specific with you on what it showed. Not it was pretty good. I would have to call his office & ask them to make me a copy of the written report & see for myself what it showed.

Let us know how all of this shapes up. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : (Seashell) - 7/7/2017 10:36 PM
Sarah:
Is the altered sensation and clawing if the hand present in one hand or in both hands?

Is the clawing of the hands limited to the ring and small finger? Or is the clawing evident in the majority of the fingers and thumb?

Peripheral nerves are nerve fibers that have exited the spinal cord. Ex. The ulnar nerve is a major nerve fiber that extends from the brachial plexus that originates in the axila of the arm. The ulnar passes behind the elbow and travels down the arm, controlling the ring and pinky fingers. Ulnar nerve palsy describes a peripheral nerve palsy of the ulnar nerve. Symptoms are loss of sensation and a clawing of the ring and pinky.

A peripheral nerve injury can be pressure to the nerve that interrupts the transmission of impulses. It can also be due to physical trauma to the nerve (falling through a window, slicing the nerve; a car accident that causes injury and swelling to the arm).

If both of your hands are affected, your neurologist will be looking for a systemic causation as opposed to a local causation (the examples above).

Inflammatory peripheral neuropathy would be one possibility for bilateral symptoms. Guillian Barre' is an example of a system inflammatory process that causes demyelination and interrupted impulse transition that would cause bilateral symptoms. Multiple sclerosis is another possibility or other auto-immune process. An MRI will be able to detect inflammatory processes that may be affecting the myelin sheath.

Electrical stimulation of the damaged peripheral nerve does benefit by keeping the nerve viable as it recovers from the underlying cause. It is like adding a power source to a severed telephone cable.

I would be very hesitant to agree to the "underwater electrical therapy" without a firm differential diagnosis of the underlying cause.

If you have an inflammatory peripheral neuropathy, the course of treatment would include corticosteroids, IV methotrexate, and soft hand splints to keep the hands from clawing (prevent tendon contractures and permanent deformity).

You can Google "inflammatory peripheral neuropathy" to see if this seems to fit your symptom profile. It would also give you a basis of knowledge to then form questions to pose to your treating neurologist. I am concerned that your neurologist has given you only a modicum of information and is recommending a procedure without a diagnosis to ascertain whether or not his "underwater nerve regrowth treatment" is even applicable or beneficial.

Bottom Line: Your neurologist needs to be communicating with you in more detail than he has to date.

Make sure that you obtain copies of the written reports from your upcoming MRIs and the radiologist's interpretation of the findings.
I hope that the MRIs can provide some definitive information.

In the interim, you may want to make a make-shift hand splint out of basic everyday cardboard to keep your wrist and fingers straight. You can cut the cardboard in the shape of a hand mitten to the outline of your hand and use stretchy Coban to keep the hand in place. You want to passively stretch the fingers and wrist into neutral extension (flat). Wear the cardboard splint for an hour. Remove and mobilize the fingers, check the skin for any excessive pressure area or irritatiOn. Repeat 3-4 times a day for one hour.

Thinking of you,
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : tiredredhead - 7/8/2017 7:43 AM
Thank you for your replies! The clawing while at rest and altered sensation is in both hands. I've spent 15 years being dx'ed with one thing after another. It's gotten fairly ridiculous at this point. My body hates me I think. Going to list my dx's and see if that rings a bell.

Knees: chondromalacia patella w chronic bursitis. Bilateral. Genetic, bc my 15 yr opd daughter also has it.

Lower back: severe degeneration, DDD, 2 herniations with an annular tear in L4-L-5. This has caused weakness and burning nerve pain in my left leg. With PT and me keeping moving I have mostly full function of that leg. Except for posterior tibial tendon dysfunction due to no nerve signal to that tendon. I do have all the burning aching stabbing nasty back pain that this brings.

Upper body: was dx'ed with TOS about 3 years ago. They were treating me in PT for what docs thought was carpal tunnel in both hands. Never responded to that treatment. Noticed each time I had my hand on the table doing exercises it turned ice cold and sluggish. Had to google that since NONE of the PTs had an answer. Found TOS and took that thought to my ortho who had me raise my arms up above my head and found I had no pulse when that occured. Did PT for that. Somewhat resolved.

Neck: about 6 years ago an MRI for neck pain showed four bulging/herniated discs. Three were causing spinal stenosis. Did PT again with traction and an MRI a year later showed stenosis was resolved and disc material had mostly returned to where it belonged. All of the above are degenerative and I've been told would worsen with age. 43 now.

Current symptoms: the hand issue. Memory loss, processing issues. Muscle spasticity body wide. Strange pains in elbow, ankles not joint related. Night sweats. Wake up drawn up into a ball and all muscles tight. Takes about an hour and two cups of coffee (lol) to get them moving properly. I literally stumble around bumping into walls until then. My pupils are huge when I wake up. Takes about 15 minutes for my vision ( blurry) to resolve.

Both my PT and my pdoc are saying MS. Which is why I was sent to neuro. So far I have had upper and lower EMGs. Basic neuro exam. Neuro cognitive memory test. I have the 3 MRIs sceduled, plus a sleep study if it ever gets out of insurance pre approval process. The neuro thinks something ugly is going on in my sleep. He hasn't voiced his opinion on MS at all.

Sorry so long but trying to get everything out there for a comprehensive story.

Sarah

Posted By : (Seashell) - 7/8/2017 8:54 AM
Sarah:
Your full symptom description does give suggestion to possible multiple sclerosis more so than an inflammatory peripheral neuropathy. Your reports of muscle spasticity and memory/cognitive problems along with pupil dilation are suspicious for some of demyelination. It is not unusual for symptoms to wax and wane with an auto-immune demyelination process.

Do you have confidence and trust in the neurologist that you are seeing?

The upcoming MRIs should give a degree of clarity in advancing an accurate differential diagnosis. I would urge you to get a printed copy of the radiologist's findings and interpretation.

I am sorry that you are dealing with some many interfering symptoms while struggling to find a root cause/source.

Sending you supportive prayer and a dose of good karma,
Karen

Posted By : straydog - 7/8/2017 9:59 AM
Sarah, its tough when there are so many multiple issues going on. I know this from my own personal experiences.

The chondromalacia is something that can be cleaned up with a scope of the knee. It depends on the grade of it. My daughter developed it as an early teen from running track. Hers was not bad enough to warrant scoping the knee. I have had my left knee scoped 4 times for various problems & chondro was an issue. It really helps when they clean out the floating debris.

As for your neck & back, I too was dx'd at an early age with same. It can progress as we age. I am now 64 & it has worsened over the years. Some people are prone to this at an early age. I call it coming from the bad gene pool, lots of medical issues with both of my parents that was passed on. There are millions of us dealing with this mess, some have no clue they have it until they have an MRI. They are fortunate enough not be having issues to know its there. I sort of remember that you are a caregiver to an elderly person. Do you have to do any lifting?

For the spasticity, did you ever get on the Baclofen 3 times a day? If not, you really need it dosed to you properly in order for it be effective. It is one of those medications that the serum level needs to be consistent to be effective.

You mentioned being on Gabapentin, I think at 200mg. Was this prescribed for nerve pain? If so, that dose will do nothing for the nerve pain. People that use it for nerve pain run between 1800/2400mg per day. Gaba is like any medication, it works for some but not everyone, but again its about the dosage.

Hopefully, once you get the MRI's done this will tell more about what is going on. If you have some type of apnea going on that can be taken care of too. Seems like its always something doesn't it.

Keep us posted. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Alcie - 7/8/2017 11:17 AM
The big question is where is the neuropathy?

I have a lot of your symptoms, hands cramping up, neck and spine pain, stumbling around with blurry vision in morning until I get my 2 cups of coffee, burning pain and weakness in both legs, but there's nothing wrong with my actual peripheral nerves in hands, arms or legs! My problem is mainly from my neck. I have 5 or 6 crushed vertebrae, lots of stenosis and disc problems. But mainly it's from breaking C3 and needing surgery there.

Some of my pain in left leg is from breaking my ankle very badly and needing 3 surgeries, but the burning and muscle spasms are from my neck. Stretching and tearing the tendons in the ankle just cause regular pain.

Gabapentin caused me to have apnea problems and I quit it cold turkey. That wasn't fun! It doesn't do anything for spinal nerve problems like pinched nerves, as far as I can see, frommy own experience and posts from spinal people. It seems to help with diabetic neuropathy, but there's nothing wrong with my actual peripheral nerves.

Baclofen didn't help with my muscle spasms, but that may have been because I couldn't get up to a theraputic dose because of the side effects. I'm on Ativan 1 mg at night. It helps, but beware it's addicting.

Don't get hopes up for imaging to provide definitive answers either. After my last MRI my neurologist said he didn't see much change. How much change does it take? I hurt more and opioids don't touch nerve pain.

I'll be interested to hear if you get any results from electrical stimulation and how they do it.

Posted By : tiredredhead - 7/8/2017 12:43 PM
I can take the Baclofen 3x a day. It's written that way. My pdoc just said take it 2 or 3 times a day, however you need it. I take 10 mg at lunch and 20 mgs at bedtime. Think I will try adding one in AM and see. If it has to stay constant I don't see the benefit of taking it "however I want to".

The gabapentin is written for me to go up 100 mg each week. Started at 100 mgs at bedtime and I go up from 200 to 300 mg tommorrow night.

I forgot to mention the horrible jaw/face pain I get at night or whenever my neck is tensed. Nothing touches that.

Not sure I overly trust any doctors anymore. 16 years ago this was all written off as fibromyalgia.

Sarah

Posted By : (Seashell) - 7/8/2017 2:22 PM
Sarah:
You have my empathy for all of the medical issues that you are juggling.

It took 8 years of poorly attentive physician appointments and diagnostic testing to finally ease through and identify correctly the root cause of my health issues - pituitary failure and auto-immune Addison's. I had a laundry list of theorized diagnoses by then, all of them incorrect and misguided. Everything from fibromyalgia, premature ovary failure, chronic fatigue syndrome, rheumatoid arthritis, and more. Years of fruitless searching for an explanation of my faltering health. Medication dosing errors and complications. It has left me skeptical and distrusting of medicine. Years lost that I cannot recover. The trajectory of my life forever changed.

There is a lot that the profession of medicine does not know nor understand about the human body and how it functions.

My sense is that you have not yet been identified correctly with what is ailing and interfering with the workings of your body.

All you need is one competent physician who will listen to your narrative and take the time to delve into discovering why your body is faltering.
Just one good physician can make the critical difference to arrive at that "ah ha" moment when the pieces of the puzzle fall into place.

Your facial pain could well be caused by facial muscles co-contracting on spasm and constructing the trigeminal nerve. Trigeminal nerve pain is excruciating. A Botox injection into the hyper-reflexive facial muscle can often bring genuine (temporary) relief.
- karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

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