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Newbie hi, very worried please read and see what you think

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#1 needtobebetter



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Posted 10 July 2008 - 01:11 AM

:unsure: Hello nice to meet you all I am a newbie..

I have lots of symptoms and Iam being investigated although its confusing as they think I have several things going on including autoimmune disease.

I have multiple food intolerances, seizures, fatigue especially in the day but restless and more awake in the evening, I wake up every night at 1am 3am as if with adrenaline..wide awake, I have big distended belly all the time and lots of things going on.. muscle weakness or wasting?? I am waiting to ee neurologist as I may have parry romberg..I have drooping face, neck weakness, wasting of nose and weakness or wasting of my bottom / hamstring on same side as facial problem.

My skin all over has lost elastcity but Iam also being tested for POF..at 32 years so Iam very upset..

I have this other symptom, which I wondered what you guys thought as it is very distressing..

The palms of my hands keep shrivelling up like ive been in a swimming pool and they go all tight with lots of horizontal lines over them, then the skin dries goes tight and the skin flakes..after the skin just looks shiny..and feels different..

It happens through out the day I can feel it when it happens and it feels horrible and Iam very worried about whats causing it..

If I do have Parry Romberg I have read I could also have Sclero..

Appreciate your thoughts..thanks so much


#2 LisaBulman


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Posted 10 July 2008 - 02:54 AM

Hi Mandy,
Welcome to the forums! I am so sorry that you have so many symptoms without a diagnosis as of yet. Going through testing and seeing doctors can be so frustrating especialliy when you are searching for answers. Here is a link to our website on Parry Rombergs Syndrome.

I don't have any answers for you on the symptoms with your hands but maybe some else here will. We are all here to support and offer advice when we can. Please feel free to ask questions!!

Please keep us updated on your tests and diagnosis.

Welcome again,

Lisa Bulman
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#3 Peggy


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Posted 10 July 2008 - 05:35 AM

Welcome and you've come to the right place for support. Everyone here is great about lending a listening ear and providing care and support. I am sorry to hear about all that you are going through. I hope that you get your answers soon. The best person to diagnose for sclero is a rheumatologist that knows about it. It took me over a year and doctor after doctor and test after test before I was finally able to find out what was wrong with me.

Good luck and warm hugs,


#4 janey


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Posted 10 July 2008 - 05:43 AM

Welcome Darlin'! With all your various symptoms, please stay on top of things and see as many doctors as you need to see. Peggy mentioned seeing a rheumatologist and I strongly agree! When you see your neurologist, you might ask him for a referral (if you even need one).

I can't relate the the strange phenomenon going on with your hands. That's a new one on me; however, I'll bet at least one of our members can relate. As far as physical symptoms go, I think this group covers them all. :lol: I do hope you get some suggestions as to what it might be. Please bring it up to your neurologist.

Let us know how you are doing and how your appointment goes. Again, Welcome!

Big Hugs,
Janey Willis
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#5 Snowbird


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Posted 10 July 2008 - 09:33 AM

Hi Mandy

Sorry, I can't help answer your particular questions but I have no doubt either that someone else along the way will. I just wanted to welcome you too!
Sending good wishes your way!

#6 Sweet


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Posted 10 July 2008 - 12:57 PM

Hi Mandy,

Welcome to the Sclero Forums. My goodness dear you have a lot going on - I am so sorry!! Getting into a good rheumatologist is imperative. He/she will know all the right testing to see if you do have Sclero - and then onto treatments.

Keep your chin up, and I look forward to knowing you better.
Warm and gentle hugs,

ISN Support Specialist
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#7 Guest_Sadie_*

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Posted 10 July 2008 - 01:16 PM

Mandy, Welcome to the board! This is a great place with wonderful people!
I'm so sorry to hear that you have alot going on. We are here for you!
You will be in my thoughts!

#8 jefa


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Posted 10 July 2008 - 09:22 PM

Hi, Mandy, and welcome to the ISN Sclero Forums. All of us have felt something like what you are experiencing when we first started exploring the various presenting symptoms. The best advice I can give you right now is to relax, don't panic and try not to spend too much time researching on the internet until your basic examinations are finished. It is so easy to look at every little thing and work yourself up. Meanwhile, we are here to talk to when you need it. Again, welcome.
Warm wishes,

Carrie Maddoux
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#9 needtobebetter



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Posted 10 July 2008 - 11:50 PM

Good morning everyone,

Thanks so much for your support!! xx

I have got to stop reading about it all but it seems to help me to be positive. Ive been like this 2.5 years and slowly deteriorated and I know it sounds strange but it helps prepare me for the worse senario..

It may not be this I also have something to do with adrenals in question aswell ..to do with salt wasting..maybe thats causing the shriveling hands and skin problem..

Although, the Parry Romberg does fit the picture Iam quite scared of this but at least I know its symptoms can be treated but it will never go ..

A few doctors think I have a few seperate illnesses taht are overlapping and frtom what Ive read thats quite common in autoimmune disease..

I have smuch knowledge as been told so many different things I think I could help people and set my own meeting for people who are in between diagnoses..lol..

Thank you..Nuerologiust have the referal now so should see her in teh next few weeks.

Thank you hope your all okay xxMandy

#10 Karenlee


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Posted 11 July 2008 - 04:14 AM

Welcome to the forum Mandy

You sound like you a grip on what's going on which is good. You are keeping on top of your symptoms. I agree with the others to try not to get sucked into reading too much on the net, but from experience I know it's easier said than done and very tempting.

Good luck to you in your journey and I look forward to getting to know you.


#11 Nina


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Posted 11 July 2008 - 08:52 AM

Welcome Mandy ~ sorry you are having such a time of it, but sad to say, I think that's about normal. I've been going from doctor to doctor for over seven years. And then, what one doctor tells you seems to stay in their file, they don't tend to share I've found. Silly me, I assumed that they would talk with each other to try to figure this thing out. Boy was I wrong.
I made an appointment with a rheumatologist the other day, one that I had seen FIVE years ago. At that time she told me that I looked like I may have Sclero. (rather than what one other rheumatologist. said could be Lupus). She said the symptoms may stay the same (I also had Raynaud's) or they could suddenly get worse. So, I didn't go back to her... Rather, I started having problems with aneima (slow bleeding in my stomach). The gastro. doctor told me I had Watermelon Stomach (he actually said, Watermelon Belly), but he never said anything about how that may be connected to Sclero. My family doctor on the other hand, she didn't connect anything, just kept telling me I had anemia.
I guess my theory is, after being through all this "stuff" ~ talk to plenty of educated people and actually TELL the doctor what you think and ask them if they have heard of this (whatever you may be concerned about) before. I trusted doctors way too much ~ I didn't ask enough questions and I always thought I was crazy (or close to it). And the way I was treated didn't help any.
So good luck, keep talking, and make them do their job!!
This is a wonderful place to come to, that's all I know for sure.