Waiting for dx

[koz274]

Hi all,

I've been lurking in the background reading posts for a few weeks now and thought it's time I came out of the shadows. :)

I'm a 36 yo mother of 4 living in Australia.

I've been experiencing lots of nuerological problems, when I think about it, for a number of years.  It has come to a head lately due to the increasingly debilitating fatigue.  I have spent four days sleeping for about 16 hours each day and still feel terrible.  It is very hard to explain to people who haven't suffered fatigue.  

I've also developed pins and needles in my left arm and left leg, numb left toes at times, a buzzing and burning sensation in my left hand, an intentention tremor, burning patches on my face and itching on my scalp and buttocks that just about sends me round the bend.  I also get a numb nose and upper jaw and sometimes my jaw develops a tremor, my arms and legs twitch on and off and the newest symptom is vertigo, just enough to put my balance completely off.  None of these are present all the time but usually there is something happening just so I know I'm alive! I nearly forgot my favourite - an almost constant muscle tick in my lower left eyelid!

I have been to see a nuero and am waiting to have an MRI.  I did fail some of the nuero tests.  I can't walk a plank.  I kept trying but just couldn't.  I fall over with my eyes closed and my toes shoot up instead of curling down.  He did say that I have no focal muscle weakness but I'm not sure what that means.

I also have hereditary hemochromatosis which causes fatigue and joint aches but my iron levels are good due to venesections.

So that me in a nutshell.  Just waiting, but not very patiently.

Koz.

[sllowe]

Welcome Coz,

And, welcome outta those shadows! And, I hope we can help, or at least bide your time while you wait for that MRI. Did the Dr. order labs?

You nailed it with the fatigue. Only those who experience it know that it's very much different than tired. It's life altering. I pray it lifts a bit for you.

While you lurked, had you a chance to peek at our health pages?  I know that's hard to do w/the fatigue. So, if you've not, no rush.

Thanks for joining us!
-Shell

[HVAC]

Welcome.
   Like the American song says "Waiting is the Hardest Part". In my case it was an intensive few years of MRIs, tons of blood tests to rule everything under the sun out, a VEP,BAER, and SSEP, and finally an LP and more blood work. Rarely do they figure out right away what is wrong. If you like your Doctors that is a plus. I did not understand the time table and went nuts with worry, needlessly. I feel there should be more support from the medical community when folks are going through the maze of tests because that is the most nerve racking part.

Alex

[meniere135]

One possibility to consider might be a vitamin b12 deficiency.  Wait for more posts and see what they say.  If this post doesn't get more comments, post your problem again.