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Old 01-15-2017, 04:03 PM #20
Sophie0513 Sophie0513 is offline
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Join Date: Nov 2016
Posts: 94
8 yr Member
Sophie0513 Sophie0513 is offline
Junior Member
 
Join Date: Nov 2016
Posts: 94
8 yr Member
Default Thank you Elaine

I appreciate that you share your personal experiences to help me understand my current situation!!! I am sorry to read that you are now experiencing seizures!!! I hope that the doctor you will be seeing will be able to help you with this!!! I am trying to be proactive with my treatment and honestly if it wasn't for the guidance that I have received from some of the people here I honestly would be totally lost!!!! Thank you again Elaine



Quote:
Originally Posted by ElaineD View Post
I see a clinical immunologist. She teaches, does research in immunology and see patients, preferably those with the conditions related to her research. She is connected with Duke University Medical Center.

If you are having any autoimmune/immune related events, you are experiencing inflammation. Inflammation causes: profound fatigue, pain and depression.

If you have SFN you are living in a cage of pain in your own skin.

There are medications for pain, for depression (Cymbalta is on label for both), unfortunately nothing really good for fatigue, unless you are put on one of the drugs to suppress your immune system (Plaquenil, methotrexate, one of the newer biologicals).

I have an Immune Deficiency which is treated with IVIG every four weeks.
Before I started infusions of IgG , My IgG was 328 (scale:588-1573) my IgA was 106 (46-287) IgM 18 (57-237). My IgG subclasses were all very low.

My IgA is normal, so I don't have problems with my gut most of the time.

It can be very difficult living with Immune/Autoimmune Disorders. I spent years and years in misery, as one system after another was attacked. I sought out the best possible doctors and we even relocated to this area because there are two medical centers within 20 miles of our house.

I am currently experiencing seizures, probably as a result of my Immune System attacking my nerves. So I will be seeing an epileptologist on January 30.

The key to surviving these experiences is finding others to share with, knowing that it's not your fault and you aren't crazy, finding a good medical team to support you, advocating for yourself strongly, and finding the medical and non medical treatments to alleviate your pain and suffering at the very least.

Keep us posted on your progress Sophie.

Hugs, Elaine D
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