Greyish-white Coloring

[dizzygirl]

So this wknd i got hit with a bad spell of things... satruday evening i got hit suddenly with major bad weakness thu my whole body... i layed down and feel asleep for a about 2 1/2 hours.. i had a paralysis spelll in my sleep...when i woke up i could barely move my fingers or toes.. and my insides where shaking/quivering really bad... I felt like i had electrciity surging thru my head.. and my one big toe on my left foot...

my joints and feet/hand where majorly afected this time by the "spell"every little joint in my whole enitre body hurt so very badly...

I was extremely weak..even breathing was a great effort...and had bad shortness of breath.. and my heart felt like it was vibrating...

my b/f came upstairs to check on me.. and he said that my face was a greyish-white looking color.. and i stayed looking that way all night long... i fell alseep and slept nearly 10 hours straight.. and woke to feel prretty much the same way i had the night before....i was up for a very short time sunday and went back to bed and slept another 6 hours.. and when i was awake i was too weak to move from my bed....i felt like i was going to die.. i felt so bad..........my body felt like ti was going to shut down.. like it was going numb....from the inside out....

Now on to my vent of frustration with medical professionals! I feel like im reaching one raod block after another.. Ive seen all the neurologist here in my home town.. ive traveled outside of here and seen dr's and im not really geting anywheres....my symptoms are getting worse and i dont know where to turn for help at this point...and i honeslty dont feel well enough to travel.....

i guess im venting once again.. and im wondeirng what is up with turning grey.. ive done this before.. with no real explaination as to why...

but i feel really horrible and these symptoms and how i feel all the time kinda scare me b/c im getting worse.. and im no closer to knowing what is really wrong.. and i feel that the only way any one might actually find out what is wrong with me is if im laying on an autopsy table seriously.. its how i feel.... i've been living with this stuff along time now.. and i dont normal freak with things even if they are bad... and im not freaking out now... i just really really dont feel welll.. and i need some answers!

[nadine]

No real great words of wisdom, just wanted to say thinking of you. I am also having a really bad week.

I know what the days are like when you feel you really won't make it through another day- physically and mentally. Is it worth being seen by your regular MD just to see if something else is going on?

I also continue to seek diagnosis and treatment for what is going on in this crazy mess of a body and frustrated beyond belief by symptoms, lack of response to treatments tried and the frustration with physicians. All of this often keeps me from wanting to call my physician to tell them something is worse or has changed- thinking it will all be attributed to the usual that is going on, but sometimes it may not be. I guess I look at as -is this something I have been through before or dift. for me.

Hope you soon have some better days. Hang in there.

[MomtoGiuliana]

So sorry for all you are going through with this. I am thinking of you and hope you see some improvement and get some answers very very soon.

[Maxine]

Hi Dizz,

Grey/white is not a good color. Someone needs to help you. Are you still seeing a surgeon about your spine issues?

I'm sorry you still keep getting passed around to ignorant docs, and I hope you find some caring medical professionals soon.

Keep your chin up. Could you go to Vanderbilt to see if they can help you?

Don't let anyone NOT take you serously.

HUGS,

Maxine :0)

[Megan]

I think I saw that you're from pennsylvannia...would toledo be closer than vanderbilt for you? Dr. Grubb at Medical College of Ohio is my doc and is great with POTS stuff. Maybe you could get a referral?

Meg

[Kitsakatsa]

Are you on Clonidine or anything like it? I had these when my dose was boosted. I can't remember the name for it, but it is a sleep phenomenon thing. My extremeties were vibrating and there was a low humming sound in my head. I also had hallucinations and during these few minutes there was a distinct taste in my mouth. During one incident, I could feel things hitting me. There is an actual medical word for all this. It was pretty frightening at the time- If this is the same thing, I don't blame you for being alarmed (I thought I was having a heart block or something). According to my doc, it is a harmless side effect with Clonidine although bothersome enough that many people will stop taking it.

Anyway, its probably good to talk to a provider about it- but I wonder if its your medication. Did you recently start, stop or increase anything?

Kits

[dizzygirl]

uhm yeah ive been on clonidine for about 5 yrs or so now..my dose has been the same for abit now.. since atleast novemeber.. and this stuff has been happeneing for about i want to say 3 yrs now..something right around there...

i;ve been a patient of dr.G for about the same amount of time 5 yrs. im acutally going to see him in june....

Uhm I've made alittle head way in getting an appointment at the cleveland clinic to see a neurologist.. who has special "interest" in ANS disorders and neuromuscular disease.. i see him in the early part of may.. so Ive got my fingers and toes crossed that he can help me and figure out what the heck is wrong...

In the mean time i had labs done to make sure my levels arent all wacky...

so i guess now its the hurry up and wait game ........

thanks for the support! you guys are awesome!