I have been going thorugh lots of testing to determine the exact nature of neuropathies for awhile now, since a severe exacerbation earlier this year.

On SSEP testing, we see slowed peripheral nerve responses in all limbs.
The LP came back without showing inflammatory markers.
EMG/NCV testing has also been done.
Skin puch biiopsy is positive for SFN.

We have found a muscle in each foot not responding, in EMG/NCV testing.
We have found slowing at the peroneal nerve area in the lower legs, specifically.

We have also found dramtic slowing at the ulnar nerve area on the left arm, with severe hand atrophy (which had occurred rather rapidly).

I have similar symptoms on the right side (arm/hand), although the testing does not yet show a dramatic slowing of nerve conduction there as of yet.

I have lost almost all strength and a lot of muscle in my left hand. (The hand is significantly atrophied and looks very different from the right hand.)

I will be having a subcutaneous anterior transposition of the ulnar nerve on this Thursday.

I have been told to not expect the return of strength and/or function that has been lost in my left hand.

The purpose for the surgery, at this point, is to try to arrest any further atrophy of the hand (wrist and arm area also now involved) at this time.

This is manifesting , symptomatically, in the right arm/hand, as well. However, we cannot find any actual nerve conduction slowing (specific to any nerve) at this time in the right side. We will keep a very close watch!

The orthopedic surgeon will do the surgery on the left arm this week.

We then hope this heals enough in time to perform the surgery on the right side before the damage is done on the right side!

I was told to expect the left arm/hand to take between 9 and 18 months to heal completely.

(We also will be further exploring whether we will need to perform any surgeries on the lower legs for similar reasons. My lower legs and ankles seem to be weakening significantly. At least one-half of one foot is numb.)

We have suspended all continued testing this month in order to have the surgery done. We will resume testing in late August.

I continue with a myriad of symptoms as we sort out the cause(s).

I will return to the forum as soon as I am reasonably able to do so!

You are all on my mind when I am away. I hope you each start to get more answers and are finding ways to relief and to healing, as well!

Big warm hugs to each of you!

looks like motor neuron disease? In addition to sensory PN?

I hope the surgery goes well. I'll be thinking of you.

Thank you for your response!

I have not known exactly what to say about it all.
I am still processing all of this and looking forward to more testing.

We do have more testing to complete. The neurologist truly suspects M.S and/or a similar CNS condition, as well. We have not been able to prove that yet. However, we also have more testing to complete.

This has been a long history of trying to find the cause(s) of chronically disabling illness for many years. More is showing up in testing this year.

This neurologist has done more testing (more quickly) than any neurologist has ever done! I am grateful to have him available to assist me at this time.

We are going into surgery, hoping to find we can stop the atrophy in the left hand/arm. (We are not sure of all of what we will find.) We can certainly take a shot at it... and see how it goes.

Oh...and regarding your many thoughts about mitochondrial involvement in neuroapthies (as well as in other conditons), wanted to let you know that my neurologist had suggested I take up to 400 mg. of COQ10 per day!

(Note: I am not recommending this to anyone. I do not know if this will be beneficial to anyone else, nor do I know the dosage most appropriate for others. Plese do inquire with your docotor, however!)

I have taken this over the years, but have never had a neurologist suggest it to me before! They have never agreed to even talk with me about it before, although I was clearly telling them I take it and find it consistently helpful with daily functioning over the years.)

Interestingly enough, I'd had a brother with similar problems and he'd had the same surgical procedures on his arms. His hands had atrophied. He'd also had peripheral neuropathies. I am not sure what would have happened with him, as he'd passed several years ago. (He did not pass from any nerve-related condition. He'd had an abdominal peritonitis.

There may be a hereditary component with this, we are not yet sure.
Nobody else in my family is showing any of the same symptoms at present (or to date).

Thaks for your response, MrsD, it means a lot to me!

I hope you enjoy your vacation!

I, too, will be thinking of you!

Good luck with your surgery. I hope everything works out well for you .

Hugs. I am sorry you have to ghtrough this but hope you get some relief and answers. You will be in my thoughts.

Sending lots of positive thoughts and prayers for healing for you this week.

Kris

Thanks "Echoes," "Daniella" and "Kris!"

I deeply appreciate your responses!

I am not thrilled with having to have this surgery. Yet, it is the only option I have, at this time, for saving what little strength I have left. I am hoping it will also decrease the pain...which is incredible! (However, there are no promises on that one, either.)

Time will tell, I guess.

I have no choice, really, but to let the surgeon attempt to save whatever he can save. I try to remain hopeful!

Thanks again!

You have a very good attitude. After do they have you do pt? I know because I had been off my feet so much they were concerned I would start to so I had to really work on being on them as much as possible. Not saying this is for you of course follow the doc. What day is it scheduled? Hang in there and many positive vibes!!

Thanks for your encouragement!

This surgery is scheduled for the day after tomorrow! (July 10th.)

There will be no PT prescribed/nor approved for this hand because the chances of recovery are actually zero.

However, I do have a physical therapist willing to work with me anyway, as we intend to strengthen any muscle we possibly can. This will likey mean strengthening any muscle not affected directly by the nerve, helping to compensate for muscle that has wasted.

The surgeon said he could give me 1-3 visits to a PT if my elbow is too stiff after the surgery. (Yet, this would be for the elbow only.)

I have had a PT and a neurologist give me many hand exercises to counter as much atrophy and weakeness as possible, as it has been occurring. This is an uphill battle when the nerve is so severely affected! I have continued the exercises though, in good faith. Even so...the hand is very weak, I have almost zero grip... only having some (mild) grip in the index finger and the thumb. (The hand is also atrophied significantly. It does not "match" my right hand in size, etc. There is a huge difference.)

(The grip loss is so severe I have not been able to hold onto the handle bars of my road bike this year; therefore, I have not been able to ride at all this year. Riding is one of my passions in life.)

One of my other passions is extending compassion and encouragement to other souls...both human and animal! Fortunately, I will still have my heart and soul and can I can still do this!

I can see this is one of your passions, as well?

There is an excellent group of people here! So glad you are here with us all!

Dejavu,
I'm so sorry to read of your problems. I really don't know what to say. The only thing I can do is wish you a speedy recovery and as many good wishes as I can send. I'm sure hoping it gives you less pain.

Billye