Well today was the end of the journey (as far as doctors go, I mean)

Alan had thought that the tingling between certain toes of each foot was an indication of nerve compression, then we both went on the internet and saw a procedure performed by a surgeon where he UNCOMPRESSED the strangled nerves. We contacted Alan's orthopedic surgeon, asked questions and Alan was referred to another neurologist.

Today was tha appointment. We were in his office from 3:30 to 7 p.m. That's how thorough he was.

At first a technician performed a nerve conduction study which was nothing that I have ever seen before. He made Alan grit his teeth, hold his arms up, and clasp his hands together and try and pull them apart. Doing this for one second intervals. Never saw this before.

A very thorough test.

Or so I thought. The neurologist walks in (he was going to do the EMG). He looks at the screen and does not like the way the nerve conduction test was performed SO HE DID HIS OWN. That's right, same procedure, same griting of the teeth, holding hands together.

Then he did an EMG. Then he did a complete neuro exam. I don't think Alan has had this kind of exam (well I don't believe he ever had had it).

The guy was THOROUGH!!

And he asked LOTS OF QUESTIONS about Alan's family background, his sister, our son, ALL KINDS OF QUESTIONS.

So at the end of it all, I really hoped the guy would turn to us and say

AHA!!! I know why Alan has neuropathy.

He did not say this.

He did say .....

"Alan does not have CIDP"

So I said "so ,are we back to Idiopathic once again?" and he nodded sadly.

I said "But there IS a cause, right?, but we don't know it, right"

And he said 'Exactly".

That's when I said the following:

"Okay, you don't know WHY he has this, but can't you do something about the pain, the tingling between the toes?" We had gone over that Alan had formerly used the fentanyl pain patch, the other stuff, and that it all made him ill, and I asked him the following (I've also asked this of other doctors but now at least I know why they all said "no, we can't do that".

I asked "Can't you just take an injection of lidocaine, or botox, OR WHATEVER can be used to numb the nerves that are causing the tingling?"

He just shook his head and said "no, it won't work". And I said "why not?" and he said something to the effect of that Alan's feet, well the nerves in his feet have died, or they are so badly damaged, that, well PAIN IS A GOOD THING, it's a sign that some of them have not died.

I said "I know that you think pain is a good thing, but to Alan, PAIN IS NOT A GOOD THING, isn't there an injection that will numb the nerves?"

He said that no, that in Alan's case, the nerves are so damaged, that the signals are misfiring (I really did try to remember everything the guy said but we are talking over 3 hours here and I want to get the facts correct.

He also said that there is no operation, no surgery, there are no compressed nerves in his feet, that he has very very bad peripheral neuropathy, that he's surprised that he walked as well as he could, that he should continue to walk, that it's good for him (even if he does have an ulcer), his ulcer was debrided last week and it looks good.

He looked at it and asked why they could not operate on the reason that Alan has the foot ulcer and I explained that the doctors don't like to operate on feet with as bad neuropathy as Alan and he nodded and said "right, because infection can lead to amputation.

So I again said "So what do you have for pain"? and he said "Well, Alan doesn't like the pain meds that are available", and I said "no, the pain meds don't like Alan". He shook his head sadly.

So this had to be the most thorough exam, and oh, I forgot. The doctor said

"Since Alan does not have CIDP, he should not be getting IVIG".

Alan is getting an infusion this Saturday. It will probably be his last I have no idea. I asked the doctor "Don't you have to be weaned off this stuff?" and the doctor said "No, nothing will happen".

Is there any truth to this.

Alan is doing it every 2 months now, and he said he has 2 more treatments to go. Can he just stop this infusion thing?

Anyway, I did try to remember everything that happened.

We came home, I made him a nice dinner and told him. "We are not done, you just continue to take as best care of yourself that you can, and I'll do the nutrition part of all of this". He laughed.

So that's all!!!!

Hope all are well.

Melody

Melody,

Did Alan have a Nerve conduction test of the spine?

This might be one cause of his neurothapy.

I know that he was hoping to find some answers about the pain he is experiencing. Did the Doctors mention any damage to the back?

Take Care.
BonDon

--in the process of doing the needle EMG/nerve conduction studies,did they do Alan's paraspinal musculature in the lower back?

This might point to disruption of signlas between the nerve roots and the nerves they serve that eventually go down the legs. (I just had one done for my weird leg/sacral/pudendal thing going on--all normal--and though it's not the most pleasant thing in the wrold, the discomfot is generally fleeting.)

As I've written before, I've always thought that Alan might have mutliple things going on--I still think that an autoimmune etiology for some of this is likely, given his other medical history, and that there may be "double crush" exacerbating the symptoms if there's any compression at all in his lower back or in his legs (speaking of which, does he have a recent lumbar MRI?).

Hi to both of you!!!

He has had a recent MRI of the back. He's had MANY mr's of the back. We went to the 4t back doctor about 2 months or so ago. He completely ruled out the fact that his neuropathy might be related to his back.

He said "I can tell you definitively!!! It's NOT his back"

And the neurologist yeaterday said "There is NO compression", his feet are (for want of a better word), disintegrating. He sat there and demonstrated that way way down the road (because this is a slow progressing neuropathy, the bones in his feet will simply go 'SPLAT. Because now he has no arch. The nerves in his feet are slowly dying. He said that when they die completely there will be no pain, and he didn't elaborate further. I can tell he was holding back for fear that Alan might get so depressed. (I saw this in his eyes).

The thing that struck me was that one of the last things he made Alan do was go into the corridor and walk back and forth and do stuff with his hands. I saw the look of amazement on the doc's face and he said "He walks pretty good". I could tell he was thinking "this guy can walk???" that well??"

Alan used to drink in his 20's. He used to black out. I never knew this because I met him at 32 and he had also given up smoking. So he smoke and he drank from his teens to whenever he stopped doing this.

I have no idea if this behavior contributed to his neuropathy and we'll never know. At present there is no test to definitely say "yup, THIS IS WHY HE HAS THIS".

Not gonna happen.

I also have no idea if they ever did a paraspinal musculature thing.

I know that last night he said to me "Melody, I can only imagine what it must be like to be electrocuted and I hope I never have that experience".

Also, we explained to the doctor that when Alan is upright, or walking, HE HAS NO TINGLING BETWEEN THE TOES. Only when he lies down, or sits down.

Now when you've told this to 11 doctors (give or take), and the final guy (who is the head neurologist at this hospital, and who MUST know his stuff, right?), because he is also a muscle specialist, well, you simply have to throw up your hands and say "well, the medical field is NOT going to be of service to us, we have to TAKE CARE OF THIS OURSELVES".

I shall continue to take care of him and myself. I am now using a product called Healthifeet and will follow instructions and massage it for 5 minutes twice a day. It's supposed to maintain good fot health.

Alan said to me last night "I guess I have to start looking at the scooter store"??? I said 'not on your life, you know what you have to do"

He said "yeah, I have to start exercising and move my body".

Years ago, when he was actively going to Dr. Theirl, and he went to the gym and did whatever weights he did at the gym, well, even though he still had the complete numb feet, he felt 100 times better. But then he got the foot ulcer.

So now it's all debrided and I rub vitamin E on the outside of it to keep the calluses from forming so hard.

I was told to do this by an physical therapist years ago, when he had had the operation on the muscle in his calf, so it would alleviate pressure on the foot ulcer. That operation failed, but he had to go to physical therapy. I would often go with him and it became a social event, and I watched the therapist do his thing on Alan's calf. He then said 'Melody come over here".

He showed me how to put Vitamin E over calluses and it would help break them down.

I am doing this faithfully.

We haven't gotten to the end of the road YET.

But what I really want to know is the following:

Can a person abruptly stop IVIG after being on it for 2 years. He is now getting it once every 8 weeks.

After this weekend, can he just stop? The neuro guy he saw yesterday is forwarding his results to his IVIG prescribing neurologist.

Can Alan call her up in a few weeks and say "this guy said I don't have CIDP, and I shouldn't be getting IVIG because it is NOT WITHOUT RISK (his words exactly)."

Can Alan then ask her if he can stop IVIG all together. Or (if any of you know), does he have to be weaned off.

We don't want him to go into any kind of shock or withdrawal. I have no clue about this and I get so many different anwers from various people.

Anyway, thanks for all your help and good info.

Melody

Glen:

Alan just asked me "Would Stem Cell therapy help me?" I said "let me go and see if there are any clinical trials done ANYWHERE in NYC".

Didn't have any luck in that department but what I found interesting (and I think I understood one percent of the whole article was that there is SOME interest IN SOME WAY TO BLOCK NGF.

From what I'm reading they are saying that using NGF can treat pain, or it can block pain (extremely confusing).

Anyway, since Methyl B-12 helped ME so much and I explained to Alan, that it's NOT A QUICK fix, but since there is NO MEDICAL help for him at the moment, he can try doing what I do, in the hopes that DOWN THE ROAD, his nerves might regenerate and stop misfiring. He did try the B-12 when I tried it but he stopped in 2 weeks because he saw NO results. I told him "it doesn't work that way".

Might we give this a try in his case? We really have nothing to lose.



So let me get back to that NGF article. Here's a segment from that article: What are your thoughts? (when you have a moment, lol)

"Given the neuroprotective versus algogenic effects of NGF, would NGF itself, or an anti-NGF strategy be of functional use in the treatment of neuropathic pain? The use of NGF itself as a treatment for neuropathic pain may be of benefit because of the pathological conditions associated with the injured nerves. Indeed, a number of studies have observed benefits of NGF treatment on neuropathic pain. However, there is also logic for trying to treat neuropathic pain by blocking the actions of NGF. This theory is justified by the rationale that uninjured fibers have an increased availability of NGF, because they are competing with fewer fibers for any target-derived supply. In addition, reactive Schwann cells in the damaged nerve begin to synthesize large amounts of NGF. Indeed, NGF overexpressing mice display a marked hypersensitivity to both mechanical and thermal stimuli after CCI, suggesting that excess NGF may enhance neuropathic pain behaviors (137). Several groups have therefore tested the use of anti-NGF treatment in models of neuropathic pain. Anti-NGF antibodies are able to delay the development of neuropathic pain behaviors after both CCI (138), and SNL (139). In addition, in a rodent model of spinal cord injury, in which neuropathic pain behaviors developed bilaterally, anti-NGF attenuated both mechanical hyperalgesia and enhanced neuronal responses in the spinal cord (140). Despite the apparent success of anti-NGF treatment observed by a number of groups, neuroprotective effects have been reported using other neurotrophic factors. For example, exogenous glial cell line-derived neurotrophic factor administration attenuates both ectopic neuronal firing and neuropathic pain behaviors after SNL (141). It is therefore feasible that a combination of anti-NGF with glial cell line-derived neurotrophic factor would have additional efficacy in the treatment of neuropathic pain.

Thanks much
Melody

Was anything like this mentioned by the doctor or any of them?

http://www.footphysicians.com/footan...arcot-foot.htm

It has nothing whatsoever to do with what I have which is CMT. It was just discovered by the same doctor - Jean Martin Charcot.

Just a thought. However, I would think some of his doctor's would know something.

IVIG is for autoimmune diseases.

I wonder.... did Alan ever have a B12 test?

I think 2 weeks is not enough time if someone has low B12.

Also, has he had his Vit D measured? Time is showing that this is a definite factor in pain perception and overall health.

I would think Alan doesn't get outside in the sun much.

hi there

Just an fyi, the gritting teeth and clenching and pulling hands is usually done to potentiate reflexes. It's the only way that the reflexes in my legs can be detected, so I automatically do that when I have my reflexes tested. I have to do both at once for them to find my reflexes.

I have not had it done during an emg, but I am guessing that they would do it to strengthen the nerve signal so they can measure it.

I asked if a nerve conduction study could be done on my back, and I was told that the nerves are too deep to be able to measure them that way. So, I think the only way to check for a compression is via the MRI, which it sounds like Alan has already had.

Great that you have found such a thorough doctor - and yes, I think you are right, there is a time to accept that the cause will likely not be found, and the only thing that can be done is to live well despite the disability.

cheers
raglet

No, he was indeed tested for charcot. He doesn't have it.

Alan NEVER goes in the sun, he's too fair.

And his B-12 was perfectly normal. He is NOT a diabetic either.

So tomorrow he starts the B-12 like I do.

We shall cross fingers and toes.

Melody

Thanks Melody. So he was tested for Charcot Foot and he doesn't have it. Hope you find an answer.