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Diagnosed with Crohn's but having weird symptoms
Digestive Health | Last Active: Jul 31, 2023 | Replies (21)Comment receiving replies
I have just been told that I have vascilitis and so many if your symptoms sound the same as mine. they are checking further for Lupus but the pain I have in my lower legs from ulcerations and rashes is excruciating. I took ten days of prednisone which helped stop additional rashes the the pain in my legs is still so bad. My left side seems to be more effected than thr right. I has a biopsy done on the skin where the ulcerations are and I have been waiting for days for the results. I have been on vacation and am so worried about going back to work with this pain. Not sure how I will make it through the day. I am now on a prescription for gout, I guess that is suppose to help the pain but I am still feeling it.
Replies to "I have just been told that I have vascilitis and so many if your symptoms sound..."
I was told they would be doing additional blood tests for the lupus byt also the skin biopsy is supposed to reveal if there are other issues. I will find out tomorrow.
@jkellyjones Just read your not again about not having any skin ulcerations, etc. All of these disorders have a common characteristic. Whenever a symptom pops up, the doctor needs to be able to look up what percentage of proven patients present this particular symptom, AND what percentage of these presentations are actually traceable to this particular disorder. If you look at my story https://bit.Ly/1w7j4j8 "Amyloidosis Version 12" you will see that nearly all of my symptoms are presented by less than 100 of patients. Only a handful of these symptoms are presented by 100%. For instance, my sFLC( sFreeLiteChain) number of >1.8 is considered obligatory. If your Serum protein is not at 1.8mg/deciliter of serum, you may be ill, but you are not classed as diagnosed. But if you do not have purpura on your toes, or macular rash, it only means you do not have the purpura or the rash. It does not mean that you do not have that you do not have any form of FreeLiteChain Amyloidosis. Perhaps 60% have neuropathy, but the lack of neuropathy only means you might be part of the 40%cadre of FLC Amy patients without neuropathy. To make a long story short, that is why docs look for multiple symptoms and signs, and do so many tests. Diagnosis is tough work in the Amy community.
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I looked that up and it does sound similar - I just don't have any skin ulcerations and it sounds like my rashes aren't anywhere near as bad as yours. When it flares up I have a hard time just sitting at a desk for a full day because everything just hurts and I feel almost like I have the flu. What kind of things are they doing to check for Lupus? I'm so sorry you are having to go through this!