Hi Suzanne,

Thanks for the advice and support.
Sadly I'm in a very dark place right now. For the last 3 or 4 nights I've noticed that my right knee is always numb when I wake up to turn over. It comes back when I rub it. Also I have pins and needles in my legs and arms on waking to varying degrees. I've always had this a little but not this frequently. My arms and legs feel weak when I first get up as well. I'm now terrified it is something worse but I refuse to look these symptoms up and scare myself even more. My friends think I've made myself worse mentally by looking up PN in the first place.

I live alone and have no family in London (I have cousins about 100 miles away but we're not close). The thought of facing this living alone is unbearable. I have a small circle of good friends but my main problem at the moment is isolation. I have no motivation to get up and every day is a struggle. I can't face the thought of going back to school feeling like this. I have a holiday in Italy booked in 3 weeks time and I'm dreading the thought of it!

Sorry to sound so negative but I feel as if I'm in a nightmare that I can't wake up from, like Groundhog Day..

Thanks again,
Karen

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.

No need to be sorry, the whole purpose of this site is to find a listening ear and some support. I just wanted to reassure you that it wont always be this consuming, although it can be frustrating since doctors can often do very little.

I do have the same issues with my arms having pins and needles every night, in fact as I type this my left hand is numb. Enough of your symptoms sound familiar that Mrs. D's advice to check family history is particularly important, it could be CMT. All of your symptoms fit neatly under a diagnosis of some type of peripheral neuropathy, I wouldn't worry that it is something more dangerous. This is bad enough, but it is not life threatening.

Work on trying to make your holiday enjoyable, be creative with your ideas, and take things that make you more comfortable. You may not be able to do everything that you had planned, but it is still nice to get away and be somewhere else, see different things. I hope that you are able to get some pain relief before then so that you can enjoy the trip.

Sleeping seems to be a big problem for you as it is for many of us. I sleep easily because of the meds, but I wake up a dozen times a night with limbs falling asleep, muscle spasms, etc. now I sleep flat on my back with my arms at my sides like a corpse. It isn't comfortable but nothing else is bearable. Experiment with pillows under your knees, lighter covers, and try not to compress your arms in any way. An ace bandage wrapped loosely around the elbow will keep you from bending it too close in your sleep, if that is a problem for you. Wrist splints can help with the hands falling asleep but not the whole arm.

Please feel to free to vent. I did not mean to sound Pollyanna-ish. Anyone here will tell you that is not my style. This is a scary set of symptoms and yours came up suddenly. I just wanted to convey the idea that your coping skills increase even if your symptoms don't improve, and they may. Sudden onset is more likely to be treatable than other types. Have you had any other CMT markers like restless legs, poor or absent reflexes, high arches?

Kitt, you are right that the weakness doesn't go away, but I do have a lot of pain in the morning which combined with the arthritis makes me less mobile. It is the worst part of the day for me. Karen may be experiencing the same confusion of symptoms. I am trying to adjust my dosing schedule so that I still have some morphine in my system when I wake up since my doctor wants me to stop relying on a Percocet to get going.

I find that the mattress toppers of gel foam stuff are very helpful for me. I have to wear a carpal tunnel support mostly for my right hand lately. This summer was stressful on that hand. If I don't, I'll have a numb arm some mornings. I also rub in the Epsom lotion into my wrists at night and that helps too.

Over last winter I didn't use my carpal tunnel brace at night and eventually my whole arm started to ache. I've had the carpal tunnel as long as my foot PN (30+yrs). So this summer when I sprained my thumb and first 2 fingers trying to open a dang jar, I wore the brace again, and slowly my arm got BETTER! That median nerve was acting up all the way up to my SHOULDER!

I don't have any problems with my hands normally during the day, unless I strain them some strange way.

So I find the mattress toppers very helpful. Only my right hand so far needs extra help at times with the brace.

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!