Hi Stacey,

I haven't been tested for my thyroid. I'll suggest it to my doctor.

Well I hope you have something easy to fix.... It is best to start with the easy obvious things and move on to the next tier if those fail. You'll need the magnesium anyway. The other major 2 nutrients that have high %
of low values... are B12, and Vit D.
Estimates today are 70% for low magnesium and low D.
about 40% low B12. I call these the Big Three.

You can check your family tree for other relatives with similar nerve problems.
That is something you can do while getting your testing etc. That would be important for a potential diagnosis of CMT in the future.

Here is a new video on low B12... it is long but very good:
http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

Karen, IMHO this does not sound like CMT to me. For example, the fact that your knee comes back from being numb when you rub it. And your arms and legs are weak when you first get up and then they are O.K. enough. If it were CMT they would not come back.

There is Hereditary Liability with Liability to Pressure Palsies (HNPP) which symptoms can return to normal or near normal. Eventually that also changes. Here is the site with lots of information.

http://www.hnpp.org/

HNPP is the opposite of CMT1A.

Doesn't hurt to check your family history anyway to see if anyone there is experiencing any kind of symptoms. A good neurologist who knows CMT could perhaps help you if you think it's that. Hope you find the answer.

Update...

I saw my rheumatology consultant today (about my elbow, an unrelated
problem),and spent all my time talking about my feet.

He examined them and coudn't find evidence of neuromas.He also did a quick
neuro, reflex and pin test and everything was fine.
He also did the stoop test on my back and says there's no evidence that the
numbness is related to a compressed nerve.

I mentioned that my voice has gone a bit weird over recent weeks (higher
register, cracking when I speak)and he sent me to get a thyroid function test in the hospital (he also took my pulse which has been racing recently:anxiety orpossible thyroid connection).
I'll know in a couple of days.

I've arranged a phone call with the podiatrist this evening to discuss my concerns about his diagnosis which I'm not looking forward to as the consultant today more or less questioned everything he said!
Maybe the orthotics he wants me to have will help a bit.

Karen

I also checked my B12 results at the docs..
712 serum
8.0 flotate whatever that means! (I know above 500 is ok)

As far as exercise and having CMT, we cannot overdo it or CMT will exacerbate. When you feel pain or even pins and needles while walking or standing, even swimming, etc. it is enough. Exercise will help the healthy muscles but not the ones affected by CMT. Sometimes it may be hard to figure out. Different for even people who have CMT. No pain no gain is not for a CMTer. Just thought I'd throw this out there.

Hi Karen,

I hope you can get this figured out.

Neuromas are not so common on the first toe. Esp on both feet at the same time.

Mostly they come from wearing too tight of a toe box in the shoes.
And occur between the 3rd and 4th toe.

I'd hold off on any surgical suggestions for now. Once you are cut in the feet, things really don't go back to baseline. I think there is always a "loss" or tradeoff.

Take a look at your shoes too. If they flex too much they will push on that area of your foot with each step. I gave up leather many years ago as my sesamoids started to give me pain.

My foot doctor told me to get a wider shoe and more open toe box. So sometimes I wear men's athletic shoes, and always with a nylon upper, never leather. There is a photo on that link I gave you of a shoe being squished showing what to avoid...it is somewhere on that complex site, at NorthCoast Foot Care.
Look at any shoe which a wide strap across that part of your foot too. Pay attention to times of less pain, and which shoes you wore that day, etc. I would think any high heels might have to go.

I was having some hammertoes, and once I got the new wider shoes, they went completely away! The magnesium helps that too.

Looks like your B12 is okay....do you have the concentration... because labs in Europe may report in different terms. mmols/L would have to be converted. I thought that Britain was now using ng/L which is the same as pg/ml. But if it is in mmol/L we have to convert it.

[Looks like your B12 is okay....do you have the concentration... because labs in Europe may report in different terms. mmols/L would have to be converted. I thought that Britain was now using ng/L which is the same as pg/ml. But if it is in mmol/L we have to convert it.[/QUOTE]


Hi again,

I'll have to check the figures with my doctor..

The podiatrist phoned me this evening (a very nice gesture of goodwill)..
I told him of all my concerns and what the rheumatologist said earlier today.
He still thinks I am "within the remit" of neuromas with my symptoms and still maintains the toe pain is referred from my spine. He wasn't as definite though, probably because he was deferring to a qualified consultant's opinion when in fact although very knowledgable about feet, he himself is not a qualified doctor.

As far as I'm aware there is no history of CMT or HNPP in my family. I often wake up with a numb hand or even arm and have never really thought about it before now. In my twenties, I had a numb patch on my thigh that lasted 3/4 days after sleeping on the floor which I remember being worried about at the time.
I have lost more than 14 pounds in weight due to the anxiety, over the last month (I'm still not eating properly), and my thighs are much thinner. Maybe that could account for the frequent numbness recently!

I've been looking at anxiety symptoms and the effects of stress on chronic pain. I know I'm doing all the wrong things at the moment (obsessing, focusing on every little ache and pain, living my life through my feet), but I think this is due in part to the fact that I don't have a diagnosis.
From my limited experience of the medical profession over this, there is patchy knowledge about the condition. This, combined with the fact that
a)it's a lengthy diagnostic process and b) there are over 100 causes, is ratcheting up my depression. I've run out of ideas, that's why I'm so down..

Karen
PS Haven't noticed any toe pain as I've typed this. Does this mean it's not there or I'm distracted? I'll probably never know!

Dear Karen- because you nailed it exactly when you said it is a lengthy diagnostic process and doctors don't really know very much or have many available treatments it is incredibly important to try and get a handle on the anxiety and dpression. That weight loss speaks volumes.

It is really important that you take care of yourself emotionally as well as physically. Make sure you are getting enough rest, try to concentrate on your nutrition, think about health rather than illness if you can. Stress certainly can mke everything worse. Hope someone has ideas for ratcheting this down for you!

Agreeing with Mrs. D. about surgery often being a mistake. I have heard of so many failed foot surgeries for CMT...

Hi Suzanne,

I'm very concerned about the depression and the eating. I get into troughs of despair and become totally inert and incapable of doing the simple things. When I get distracted from it and immerse myself in something else, it hits me like a ton of bricks when I remember it, (or more likely when the pain or numb spot when I walk does).
It's as if my subconscious wants it permanently at the forefront of my mind so that I don't have to be repeatedly upset by it. Better to be constantly miserable than peaks and troughs. Crazy logic I know...People get ill. They deal with it. I find it excruciatingly difficult.
I envy everyone else, whatever their problems and think they are better off than me. I think that's why I can't get it off my mind. I get little windows of time when I'm able to put it in perspective so there's hope at least: but as everyone who uses this site for advice and support knows, it can be a devastating, lifechanging experience.

Take care,
Karen