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Please Help

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#1 Kumarb22



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Posted 19 June 2008 - 05:56 AM

For blood work, my son had negative ANA, positive SCL-70 and a high sed rate, low ferritin , mildly elevated acetylcholine receptor( 0.53nm0l) and high TSH

Also he had lax esophageal sphincter, antral gastritis, duodenitis, loss of voice, chest (sternum/rib cage) pain, neck muscle spasms/ tightness, vitiligo, and major fatigue.

Doctor's saying nothing to worry about, but he is suffering a lot.

Any advise or idea

#2 jefa


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Posted 19 June 2008 - 06:53 AM

Hello, Kumarb. Welcome to the ISN Sclero Forums. You have found an excellent place for discussion and support. I am sorry to hear your son is having these difficulties. How old is he, by the way?

We are not doctors, so it is impossible for us to give you any advice or suggest possible diagnoses based on information from particular tests. I would ask whether your son is being seen by a rheumatologist. A scleroderma specialist would be the best choice, but a rheumatologist would be the next best choice.

Our page on Scleroderma Experts will give you links for most parts of the world.

Our page on Autoantibodies in Scleroderma will give you some information about some of the tests. Positives and negatives in some of these tests do not necessarily rule out (or rule in) a specific diagnosis.

I hope after reading a bit more about some of these tests you may be able to ask your son's doctors to explain things more thoroughly. Again, welcome. I look forward to reading more of your posts.

Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 Snowbird


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Posted 19 June 2008 - 08:21 AM

Hi Kumarb22

I am also sorry to hear about your son having such difficulties.

I am no doctor either as you know but Jefa has given you excellent information by the links below. If it were my son, I would request a Rheumatologist/scleroderma specialist as well for a second opinion and also to investigate his symptoms more completely.

I hope you continue to chat with us and keep us updated on your son. It's a great place to ask your questions...there is always someone here that can help answer.
Sending good wishes your way!

#4 Sweet


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Posted 19 June 2008 - 10:00 AM

Hi Kumarb,

Welcome to the Sclero Forums. I'm sorry to hear your son is sick. The links Jefa gave you are terrific - I hope you can find answers among them.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#5 Guest_Sadie_*

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Posted 19 June 2008 - 10:20 AM

Kumarb, Welcome to the board! This is a wonderful place! I am so sorry to hear that your son is sick.
Jefa gave you great info! Anytime you need to talk, we are always here for you!

#6 KarenL


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Posted 20 June 2008 - 06:05 AM

I would suggest that you start investigating online. You cab look up all of those blood tests and find out what they mean by knowing the 'reference range' for each. The lab should be able to give you a result sheet with their reference ranges on it, but it's always informative to see explanations online. I google "ANA blood results" and lots comes up. Knowing what the tests mean will give you questions to ask and at least some control over the fear you face. Best of luck,