Hi, Terri. I have definite MS, definite autoimmune hypothyroid, and next week I'm being worked up at NIH in Bethesda, MD, for Sjogrens Syndrome. People with Sjogrens often have other autoimmune diseases, but these tend to be the connective tissue types, such as Lupus and RA. In these instances, Sjogrens is considered secondary to the connective tissue illness, and can cause all kinds of serious systemic problems.
For me, if I do have Sjogrens, it is the primary type, which is not more prevalent in MSers than in the general population. It still can cause some pretty bad issues and have a major effect on health and quality of life.
One reason the particular division of NIH may be interested in me is that my family has a lot of autoimmune stuff in general, all on my mother's side, and all female. In addition to MS (just me), there are several other cases of hypothyroidism, one definite case of Grave's disease (a kind of hyperthyroidism), one of Pernicious Anemia, and one with definite Lupus, maybe RA, maybe Pernicious Anemia. (This last case is a gal in her mid-twenties who is rather out-of-sight, out-of-mind when it comes to a lot of things, but sooner or later she'll have to deal.) Anyway, the genes must be interesting for the NIH purposes, as they'll be studying my DNA.
As for people with MS, they often have an additional autoimmune condition, and so do any people with most any other autoimmune thing. On this forum we've had quite a few with multiple such conditions. But having MS doesn't mean you're highly likely to get something else autoimmune, it just means you're more likely than the average person to do so.
Thanks for pointing us to your journal, Terri. I will definitely take a look.
ess
Hi Terri, I also have a number of autoimmune conditions but my primary conditions are Rheumatoid Arthritis & MS. My Raynaud's is secondary to my autoimmune conditions.This comes from my fathers side of the family where there is Inflammatory bowel disease, RA, MS, different kinds of autoimmune lung disease, Psoriasis, Raynaud's, Thyroid disease & some others that I can't recall.
Over the years I was always being tested for SLE lupus but I consistently have negative blood work & I don't have a butterfly rash. I am aware that with most conditions there is a Seronegative form which means you don't have positive blood work but I don't fit much of the criteria for lupus either. It wouldn't surprise me if sometime in the future I am dx with another autoimmune condition. I was told that once you have one autoimmune condition your chances are much higher to get another & when you have two it just increases even further & so forth.
At the moment I have been asked to discuss my dry mouth & eyes with my Rheumatologist incase I have secondary Sjogrens Syndrome. I have had a dry mouth for 10 + years & assumed it was a side effect of medications but I have never discussed this with my doctors. I recently had a Speech Therapist look in my mouth & I have very deep grooves from a long term dry mouth. I haven't seen my Ophthalmologist in over 10 years which is not good as I'm supposed to go every year. Now I have reminded myself of all of this I will try & arrange some referrals oops.
Thanks for that,
Karry.
Thanks Ess for your reply,
It is nice to hear from you again. I appreciate all your information about yourself that you have provided me.
I find this multiple autoimmune syndrome very interesting. I never thought much about it before until I started with these new problems this spring, which seems to always be the case for me and all the data I have found online about it.
I hope when you go for evaluation for Sjogren's, you can find an answer for your other symptoms. I, too, greatly appreciated your response to my prior post on Raynaud's as well. I was quite freaked out when my feet were turning blue the first couple of times, but now I know that a lot of MSers, etc. have this condition.
Please keep in touch after your appointment with NIH and their findings. Stay well, Ess.....
terri
Hi Karry,
Thanks for your response. I never even heard about multiple autoimmune syndrome before as I told Ess, until I found it online doing my usual investigating and I have been in the medical field for over 30 years.
It is bad enough having to deal with one disease and then others on top of it.
When I went to my PCP in March with the facial redness, I asked him straight out if you can have multiple and he said yes, just like you said. I told him that I was worried about lupus as well, he did double-stranded DNA, ANA, etc. which were negative, although he said the ANA does not always tell the story. This must be what you referred to as seronegative. I did find online that just like with MS symptoms, those with lupus will not all have a butterfly rash and symptoms as others do.
I, too, thought about Sjogren's but the only symptom I have is dry mouth, but I tend to be a mouth-breather when I sleep. Anymore, I question so many things. If I do have lupus as well, I think it is the skin/neurological type.
I am sorry to hear that you have to deal with this syndrome. Stay well and keep in touch, and be sure to make your eye appointment, etc.
Terri
I wanted to add to my previous post that I am noticing more and more that any kind of sun exposure is causing extremely worsening redness of my face and some kind of lesions on my scalp by palpation.
My chin has now become red, bump and swollen, which is extremely embarrassing to me. I have never had skin issues even as a teenager way back when.
After some investigating online, I found that there are "lymph nodes" underneath the skin in your chin, in which swelling can be caused by autoimmune disease.
I cannot wait to go and see the rheumatologist at Crystal Clinic next Thursday. I pray that someone can take a biopsy or something to find out whether this is lupus now on top of MS and my thyroid. I truly feel that my MS symptoms are completely separate from this new problem. I just do not want to wait another 11 years to find out what this is.
Thanks everyone.....
Terri