Hi all. Because we never did find an actual cause for his neuropathy (and he is now in a humongous Crow Boot for his re-curring foot ulcer because he forgot to change orthotics after 4 months and his foot ulcer came back) so his doctor ordered him a Crow Boot and he has it for less than a week and it's causing rubbing and his leg looks like raw meat so I have pads and I covered his psoriasis with a light piece of tea shirt material so it will less the rubbing. He is going back to Hangar Clinic at 12 noon today so the guy who fitted him for this boot will look and see if it can be adjusted.

How the heck can they adjust a crow boot? It's custom molded. Anyone know?

Now for my next question. Long ago I once asked one of his podiatrist "Can Alan have Charcot"? I immediately heard a big NO, he doesn't fit the profile"

Well yesterday I looked up Charcot Marie Tooth and watch videos on youtube and learned all about it's cause, variants (VARIANTS??) and looked at Alan's stiff curled downward toes (he has hammer toes). Like a stiff board, those toes are. He can't uncurl them. I phoned his sister and she has this, (besides Morton's neuromas which she gets trigger point injections). I asked "did your mom have hammer toes". She said "OH yes"

So I ran this by Alan and said "Tomorrow, when you go to Hangar Clinic, ask the guy if you could possibly have Charcot Marie Tooth". He said "no problem". This morning I said to Alan "What are you going to ask the guy at Hangar?" He said "Oh, I'm going to ask him if I have Charlotte Boot Katoot". I never laughed so hard in my life.

I then wrote the guy a note which Alan will give to him. I cant' trust this guy to get any names right.

While he doesn't exactly fit the profile, Charcot gives you stiff toes (and sometimes hands, I know because I watched several videos), hammer toes, neuropathy, etc. (many of these symptoms Alan does have).

I know there is no cure, it's genetic, etc. But I like to learn stuff. And I will definitely run this by his podiatrist on Tuesday when I go with him.

The only actual test is a sural biopsy right? Don't know if Alan is up for that, because he has Prostate Cancer (unspecified stage as of yet). We have lots ahead of us and I don't want to cause any more grief. I guess I want an answer as to WHY this man got neuropathy.

All comments are welcome. Thanks much

Melody

We have 2 members here who post who have CMT...

I think you should put in the search engine..."Charcot"
and read the posts.

Don't use CMT as our software won't latch on to that keyword as it is too short.

Longstanding CMT does affect motor ability too. So if Alan has little if any loss of motor functions, CMT may not be the culprit.
But yes...there are many variants and it may not be diagnosed properly since doctors are not trained about it.

--as we spoke about through e-mail, make sure they are not talking about the "Charcot foot", which is a consequence of diabetic neuropathy involving bone deterioration and deformity, leading to sores and the like.

Many people will confuse that entity with Charcot-Marie-Tooth syndrome as Dr. Charcot wrote about both conditions (and yes, "Marie" and "Tooth" are also names of physicians).

But, it may be worth looking into genetic testing for CMT and its variants--at least the ones there are tests for currently--given that he has been labelled idiopathic for so long.

Hi all. Today we went to the Podiatrist. I said "I want to run something by you" and I went into my carefully worded story about why I think Alan MIGHT have a variant of CMT. He looked at me and said 'You don't want him to have Charcot Foot'. I said "I'm not talking about Charcot Foot", I'm talking about Charcot Marie Tooth and it's many variants and he listened and he said "You need to go to a rheumatologist who will make a determination". I said "we went to one YEARS ago" and he ran all sorts of allergy tests and he never mentioned CMT but then again, Alan did not have the stiff toes that he now has and we had no clue about his sister and his mother"

So we talked some more and now Alan is actually looking up stuff. I just found out something extremely interesting. I was on a website that stated all the different kinds of CMT the numbering CMT1, CMT2. etc. etc.

And guess what else CMT does? It causes deafness. Alan is profoundly hard of hearing and uses TV ears to watch TV.

What does that tell you? I do think I'm on to something.

But he has so much else going on (he needs to get a prostate biopsy) and we will probably talk to his doctor about running some genetic testing.I don't think his insurance will pay for this but I have to ask anyway.

Will update. And I will go and look up Charcot Marie Tooth on these forums.

Thanks to all

And thank god this man has me. That's all I have to say. (and I don't care how stuffy I sound), it's the truth. I'm the one who asks all the necessary questions and takes care of him. I only wish I had known about the genetic link earlier in his life. He's had this for about 25 years or so.

Oh, and his neuropathy was SO bad while he was sitting in the podiatrist's chair I asked if he could get some trigger point injections. And he got them. Oh well!!!

Melody

Hi Melody,

I'd like to suggest avoiding a sural nerve biopsy.

I've had one and life has never been the same.

It's been many years and that area still burns like crazy. I could not wear a full shoe on that foot for over 3 years and was in constant severe pain. I have long-term complications from the nerve injury (from the sural nerve biopsy).

Some neurologists specialize in different diagnoses. You may find a neurologist specializing in CMT nearby? These specialist usually know of the variants, as well.

As always, my best to you and to Alan!


DejaVu

I may have a doctor now that will order genetic testing. I have SFN.
Which ones do you suggest Glenn?

--are those for a number of the Charcot-Marie-Tooth variants and some for hereditary neuropathies with sensory/autonomic components, as well as some sensory-motor and even pure motor syndromes. Of course,it is likely one would need to be at a tertiary center to find geneticists who know of these, and even then insurance coverage is a big question.


See:

http://neuromuscular.wustl.edu/time/hsn.htm

http://neuromuscular.wustl.edu/time/hmsn.html

Ah yes. Insurance companies. They don't approve much do they? I have a question. I have been reading about stem cell therapy for various conditions. I would imagine that if one has a faulty gene or whatever that causes all these neuropathies, do you think if one could participate (or get) stem cells, that it might correct the condition? And how on earth does one FIND a clinical trial to participate in? I would imagine I could google this but I would get 10,000 hits and no answers.

Just a thought!!

https://clinicaltrials.gov/ct2/resul...&Search=Search

There is a poster on PN who is having stem cell therapy..
So far not too much results. " northerngrl"