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Re: pain , Matt

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Matt,

It's probably the neuropathy-- but one thing that hit home with me is that the arm pain and numbness was directly linked to the pulmonary hypertension.

PH is when your heart is demanding more oxygen than your lungs can send out, so the heart starts working harder (beating faster or irregularly) and to salvage the organs-- your brain blocks the signal to send the blood to the extremities.

A PFT-- pulmonary function test-- showed that I have lost another lobe to sarc, and the upper bronchials are fully calcified. So what should be hair fiber-like bronchials (tiny airsacs that should be flexi ble) are no longer flexing.

The did an MRI of my lungs and heart, along with a dye induced CT that showed I have some inflammation in the pericardial sac (it is the sac that surrounds the heart-- essentially floating the heart in pericardial fluid so that the heart beats in normal rhythm.

Your doc may be missing that this is a sign of cardiac involvement-- i'd be printing out the articles on cardiac sarcoidosis or the 'heart and sarcoidosis' and also if you've not requested the Cardiac Sarcoidosis brochure from FSR-- www.stopsarcoidosis.com I'd be going there and getting a copy sent to me.

Also-- www.sarcoidosissharma has a great article on cardiac sarc, as well as pulmonary hypertension with sarcoidosis.

Hope this helps,

Tracie

nS Co-owner/moderator

Re: pain , Matt

That is a big part of my problem,some days I can't even lift my arms they feel like they each weigh a ton and hurt so bad, My Neuro said that's part of NS. some days I have no or little pain and somedays I can't function.

So I am pretty sure it goes along with NS due to the nerve damamge

Many Blessings and Hugs Abouhamama

Hi I was wondering if anyone else has a problem with numbness folledby severe pain. i have for the past several weeks been getting severepains in my arm followed by a tingling then numbness and as always docdoesnt know why.if anyone else has had similar problems and what theydid about it i would appreciate it. Thanks Matt

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