Re: sarcoid nerve damage

[Guest guest]

Joe,

Part of what can happen with sarc is that the inflammation can be systemic. It can show up in the nerves as neuropathy-- and we can actually get the demylination starting at the nerve ends instead of at the spine - which is what happens with MS.

We also can develop "small nerve fiber neuropathy" where for me, it means that even the air touching my skin makes it feel like it's on fire.

It is very possible to have sarc-induced arthritis; and sarc seems to love the hands and feet, ankles and wrists. We also sometimes get "vasculitis"-- where there is inflammation of the blood vessels themself. There is blood cells and proteins that can become inflammed, and this shows up as increased CRP (C-Reactive Protein) and as increased levels of ACE--Angiotensin Converting Enzymes. It's also possible that these levels will decrease when we are being treated with anti-inflammatories and immunosupressants.

Another blood marker is the TNF-b (Tumor Necrosing Factor B cells). Generally we produce too many TNF-b-- and that is the cleaner of the other white blood cells, followed by the TNF-a to clear out the white cells, which then require TNF-b to clear the TNF-a.

This cycle seems to break down, and nothing gets cleared out, instead- those white cells are built layer on layer- forming granulomas.

If you've not checked out the FSR site--www.stopsarcoidosis.org -- do so. There is a pamphlet you can order that is excellant, and it explains the different systemic effects of sarcoidosis.

The tests that can show nerve damage are the EMG, EEG. They can also do CT's that can show how the muscles and ligaments are being effected-- the gallium and PET scans with and without contrast are helpful.

Neuropsych testing can show how the brain is being effected, because each task requires a different part of the brain to be used to complete the task. This can show involvement when the scans are clear-- as they are in many of us with NS.

I've found that there are 2 major factors in how bad my nerve pain is-- one is hydration-- and the other is blood sugar. I've started having major problems with my blood sugar-- I'm sure it's from the increase in my Remicade-- but at least my arthritis issues are much better.

The more suppressed our immune systems get, the higher the possibility of diabetes, etc.

As far as the effect of lymphatic involvement,-- what seems to happen is that if you get sick, the lymphs have a harder time clearing out the toxins. Lymphatic massage done by a trained massage therapist can help. It is imperative that you drink plenty of water before and after a massage, so that the toxins don't sit in your lymphs. Many Hospices can recommend someone that specializes in lymphatic massage- as this is a problem for many people with various cancers.

High dose Vit C (Ester C) can help keep the lymphs more clear. You'll also find that you don't sweat like you should-- and that is a clear sign that your lymphs are plugged.

What happens with our bodies is that the sarcoidosis gets into a system, for example- your lungs-- and the lung tissue that should look like a new sponge-- ends up scarred, and then the air we breath in doesn't get across the lungs- to be picked up in the red blood cells, and be taken out to our extremities. If this happens in the liver, or lymphs, or bones- wherever there is scarring going on-- that system is compromised, and the problems start showing up that should be controlled by that organ.

Hope this helps, and if you look in the ARCHIVES AND LINKS- scroll down, the address is at the bottom of this and every email that goes out-- so you can research from different posts. I'll also post it on a separate email so that if you have a block on the goodies at the bottom--you can access the links.

Sincerely,

Tracie

NS Co-owner/moderator

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