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...

About the thyroid: Hope you requested or had a good enough dr to order FREE T3 and FREE T4 tests otherwise he wasted your time and money. Most dr's who do not understand thyroid only order a TSH test, which is useless. TSH is NOT a good test for diagnosing thyroid issues. Also the word FREE is important not just the T3 or T3 but FREE.

Good results are usually a Free T3 in the upper to high range and the T4 mid range.

Your voice issues sound hormonal, adrenal or thyroid or all. Most people who have thyroid issues usually have adrenal fatigue to some degree.

Oh side note: I had a neuroma on my foot 15 years ago and had it surgically removed, it was between my third and fourth toes down on the pad of my foot. Got a permanent numb spot after surgery too.

Also, were you taking any vitamins with B12 in it before the test? If so, it will make numbers higher than they really are.

Hi Stacey,

I've no idea what thyroid test the consultant arranged. I could go to my doctor and specifically ask for the ones you mentioned.

Yes I was taking B12 and had been for 3 weeks before the test at 1000ug a day (don't know the conversion amount), as I had already been reading extensively around PN. I should mention this to the doc as well.

The voice could be anxiety or lack of use! I'm a teacher and am usually using it all day, often at high volume. It has got increasingly deeper over my career with excessive use. As I'm at home now (alone), I hardly use it. The hoarseness at low register does seem to ease off the more I speak though.
I don't really want to start looking this up as well and extrapolating all sorts of horror scenarios. I'm in a bad enough place now.
My friends switch off when I talk about PN as they dismiss it as yet another of my hyperchondria episodes. This site has been a lifeline...

Karen

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

Hi,

Realised I managed to spell both Stacy and Susanne wrong, apologies!

@ Karen.... If you were taking B12 and didn't stop it for 5 days or more before the test, then your results are not sterling by any means. A test is only a snapshot in time. You could be going up or coming down. Having another test in 3 months and stopping all B12 supplements for at least 5 days before may reveal more.

On oral B12 you should be higher (closer to 1000). I would continue with the B12..therefore, as you were doing...and make sure you take on an empty stomach. Your depressive feelings could be related to low B12.

I've learned not to talk about myself and my pains many years ago. People just don't want to hear about it. I think it is more difficult to come to terms with a chronic health problem that rears up, if one has a personality that is used to controlling situations.
And a good teacher would have this trait, in order to keep a room full of children working well and learning. We cannot control our bodies the same way, so this is going to be difficult. It can take a while to accept new medical situations. It is being studied also by chronic pain specialists that focusing on the problem (pain) too much creates learned pathways to the pain perception centers in the brain. This is like any other learned skill, like driving a car or riding a bike etc. So while pain is aggravating, trying to keep it in the background and keeping busy with something else is best. Music, (I use art and my pets), quilting and sewing (my friend does this), reading or whatever, will really help.

So while it is helpful to vent (which is what this place is for among other things), it may be better to not focus too much on your pain with other people often in your private life. My husband asks me each morning how I am...and that is basically the only sharing time for me (unless some really sudden acute thing happens, like when my back slipped out 2 wks ago and I couldn't walk for 2 days).

You might find keeping a journal is helpful. Sometimes we can even find food triggers or some other trigger in there besides the other content. Food triggers may be delayed in onset by a day or 2 or 3 and a journal can reveal that type of thing.

Absolutely! I have told my husband I need five minutes of whine time a day, just to vent, usually in the morning when it is worse. Then I keep, or am kept, pretty busy. I knit, quilt, read a lot, my needlework skills have deteriorated but I can still do things, though it takes forever. Sometimes I panic when I have trouble dressing myself, projecting what it will be like in 5 or 10 years, but I no longer dwell on the changes like I used to.
Apologizing for spelling our names wrong shows that you are a perfectionist, Karen! Chronic illness is particulately hard if you have high standards of accomplishment. Do you have a counselor to help with your depression?

I forgot to admit to my major home therapeutic intervention.

I confess, I play Angry Birds....

I find this very helpful and pretty easy still. I don't do any other video game however. The Angry Birds are funny... but trying for a higher score, engages me. My cat Weezie likes the sounds too.
Her name Weeeeeee... is the sound the White Bird makes. Weezie never meowed as a kitten, only made the Weeeeeee.... sound.
So I named her that.

Here is a photo of first day home... she was the last kitten in the litter and not adopted because she was so timid (and all black)... our beloved 20 yr old cat had a stroke suddenly after New Year's and I missed her so much.. there were few if any kittens at all at that time of year. So I took her easily, and she glombed onto me and became my "baby" (and boy she was just like a human baby too)... Now she is huge, and independent, but still considers me her "Mom" at times. I was so wrapped up with her then, I didn't notice much of my own problems!

The second photo is childlike Weez keeping me company on the computer...she gets silly sometimes when I work here. There isn't a day she fails to make us laugh! We enjoy her so much!

Thanks Mrs D and Susanne...

I have a lovely ground floor flat, a beautiful small garden and two fantastic cats. After several long term relationships I found myself moving to London and living alone - my choice.
Most of the time this is ok, if a little lonely. My close friends all live alone by choice too (we range in age from late 40's to mid 50's), quite unusual even in this day and age..
However, when something like this comes along, living alone becomes unbearable. I went part time last year (working 3 days a week).
As I'm off work with depression at the moment I can go for days without going out or seeing anyone. I think this is slowly improving as the anti depressants are starting to take effect. My particular school is a very stressful and difficult place to work so going back is going to be difficult.

On the physical front, I had a good night's rest, no foot pain or numb limbs, just a bit of dull toe ache during moving around this morning. This is great but gives me a false sense of security. I guess I'm just not used to the waxing and waning of symptoms yet..

Thanks again for responding so quickly. (I'm getting used to the -5GMT time difference now!!).

Karen x
PS Yes I am a perfectionist in some things. I like being in control of my body in particular (keeping fit, eating healthily, a history of anorexia...). As you pointed out, that's why I'm finding this so hard,

I think waning symptoms are a good sign. This means healing may be taking place. The body does its own cycling too, while this happens. The chemistries involved are so complex! I just try to help those along as much as possible with diet/supplements, and rest.

When something stops changing and is awful every minute of the day, for an extended time...that is when despair comes in.

Yes, I can empathize with being alone. I do rely on my husband alot.(we were married in 1968!) And I have a dear patient friend too but she is very busy and I only see her occasionally.

After working with the "public" for 40+ yrs, I found retirement a new pleasure. The first few months were awkward, but I have found my stride now.

Just take it a day at a time! I try not to watch TV too much ...lately here in US the news climate is very upsetting! My husband is furloughed right now! So I am watching only a few minutes of the day, of any news show!