The Lupus Forum banner
1 - 5 of 5 Posts

· Registered
Joined
·
13 Posts
Discussion Starter · #1 ·
I was told my red patches that are raised is probably Crohn's disease and nothing to do with the lupus. I now have lupus, Sjogren's, Multiple Sclerosis and maybe Crohn's disease.

I would like to know how someone who has lived a very healthy life style could come up with so many problems. I'm sure all of you wonder the same thing.

Thank you all for encouraging me to see the doc because it will be a help in catching it and getting on the right meds for it. I am so used to not seeing doctors that it never dawned on me to go before. I have really gotten burned out on seeing them because of having so many for so long. Neurologist are the crazyest of them all but my rheumy is the most understanding of all and very kind.

Thank you everyone so very much,
Ticker
 

· Registered
Joined
·
593 Posts
Hi there,
I am so sorry for your news what an awful nightmare for you!
Is your doc gong to run tests to confirm this?

I also suffer with the auatoimmune beast and am wondering whats going to go wrong next.

I have hashimotos thyroiditis, Type 1 diabetes and now MCTD and hoping nothing else is going to come up.

I really hope everything goes well for you!!

Good Luck

Take Care

Cassie :)
 

· Registered
Joined
·
13 Posts
Discussion Starter · #3 ·
I guess it is always a disappointment when we get a completely new disease. Maybe we are preparred to get the new symptom of the old disease but somehow it doesn't seem fair or sane to get a handful of different ones that doesn't seem related. As if one person shouldn't have that much bad luck.

My rheumy took many vials of blood to test and he wants me to come in for a fast peek when my red patch pops back up again. He is one of our smarter doctors around here so I have a lot of faith in him.

I'm sorry to hear you are dealing with so much and wonder how bad is your problem with lupus? What causes your throiditis? Do you have to take antibodics for it? I have low throid but my mom did also.
Take care,
Ticker
 

· Registered
Joined
·
593 Posts
Hi,
I have underactive thyroid, hashimotos is the suatoimmune disease that causes underactive thyroid, so antibodies acting the thyroid damanging its function, so I daily thyroxine for life. I have had the type 1 daibetes since I was 2 so that was the first thing.

I do not have a lupus diagnosis, I have MCTD, Mixed Connective Tissue Disease. This causes and overlap of symptoms of SLE, Scleroderma and polymyositis. It is also characterised by a specific anti body in the blood. Ant Rnp. So I have the photosensitivity, malar rash, joint pain, fatigue amongst other things from the lupus, then muscle pain and weakness from the polymyositis, and then have raynauds and swollen sausage like hands and hardening of the skin from the scleroderma, so quite a mixed bag really!
I also have GERD which is I think associated to the scleroderma aswell. Its alot going on but no where near like what you have to put up with, you must be very strong to have to deal with so many difficult and complex conditions.

I really wish you all the best.

Take Good Care

Cassie :)
 

· Registered
Joined
·
13 Posts
Discussion Starter · #5 ·
Lord Cassie, you have a lot on your plate.

To have to limit your diet since a child sounds really hard to me. Part of childhood is stuffing our selves sick with sugary treats when out of site of parents.

I have never heard of polymyositis. Poly means many and myo is muscle and itis means inflamation so I am thinking it means some kind of autoimmune disease that hits the muscles. Am I right?

Mine sound worse than they are except for the fact that I have had a lot of family and neighbors that did not understand how sick I was at times because I looked so normal and healthy. My m.s. was always more mild except for the hidden "extra bad" cognitive dysfunction. I did have very bad fatigue also but mostly during relapes.

With lupus, family and others don't expect me to look different but with m.s. they thought if I was not in a wheel chair or using a cane, I should be just fine. I rarely used either so I was expected to keep up the pace which of course I couldn't. It also took me many years for the doctors to dx the m.s. which caused some doctors and family and friends to think "I just wanted it". That hurt a lot.
Take care,
Ticker

 
1 - 5 of 5 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top