Hi all. I am writing to all of you because I was just dxed w my third rare disorder. I have cervical Dystonia, EM and now silent sinus syndrome. I have no idea why I would have all three but wondering if having one rare disorder puts you at risk at having another? My docs at Mayo whom I communicate with via email suggested that I see a geneticist but I honestly don’t want to see another doc. So sick of it. Having surgery on my rare sinus condition soon so before I go see another doc wanted to know if anyone else has heard of the correlations of having more than one rare disorders. Thanks so much.
My first neurologist told me many people with autoimmune illness will develop at least one more or several more. Unfortunately, I have developed several autoimmune diseases. Some are considered rare and some are not. Every few years I’m dxed with a new one.
I have MS, “possible Lupus”, Relapsing Polychondritis,
Erythromelalgia, Arthritis in the spine and feet. I could go on but I will spare you. It is getting so I can’t tell when the MS is flaring as the pain overlaps.
Not sure about your sinus being part of the rare illness category? I assume you had an MRI to dx your sinus illness? If you didn’t have one, Harry, insist that you get one. I will have to look up your dx. I had sinus problems due to a broken nose when I was a kid. I had two surgeries to correct the problem when I was 23 years old. Thank God I feel okay. I’m 65 now and old age is setting in on top of all my ailments so I have to be careful.
Good luck with your conditions and come back if you can. Glad you’re going for a second opinion. That is a must.
All the best to you.
Is this true?
So if I got EM, its a high chance of me developing another rare disease?
My EM supposedly is secondary to the MS. My answer was to a question asking “can a person get more than one autoimmune illness”.
Do you know if you have the gene for EM or if you developed it the condition later on?
As there has been discussions here, you will notice that everyone’s EM is different and is caused by different factors. My doctor told me that I may develop more because I also have symptoms of Lupus that aren’t symptoms of MS. That was the context of why he told me that I may have Lupus as well. Even though I have the symptoms, my latest rheumatologist told me I’m not testing positive for it. So that’s a relief. She keeps testing me every few years.
Because you have EM doesn’t necessarily mean that you will develop another condition. Don’t worry because you don’t need the stress. I’m sorry if my post shook you up.
Thanks so much for your response. Yes I had a cat scan which confirmed this silent sinus syndrome. I sorry you too Gabe to deal w multiple issues. Keep the faith. Harriette
Dear Harriette, I am happy you got the cat scan. Get the second opinion.
I’ll pray for you. Yes, we shall keep the faith!
I have sick sinus syndrome. Is that the same? I ended up getting a pacemaker to help out with that. I, too, have had weird things for half my life (I’m 60 now). Kinda makes one wonder. My brother tells me I’m weird, and I think I’m beginning to believe him!! LOL
Currently, I have EM, fibromyalgia, Raynaud’s, and I’m guessing SFN. None of them are severe, tho, thank goodness! I just tell people I have bi-polar feet.
I don’t know if there are correlations, except that I had PTSD before the above 4 issues. For me, I’m sure these are all an outgrowth of the stress I was under 5 years ago. I’ve tried EMDR to help with the PTSD, and tho it really helped with some, it didn’t bring me all the way. (Maybe I need more EMDR treatments!)
So there we are. Are you under stress? Do you feel your response to stress could be improved? Just a few thoughts. Best of luck with whatever you decide to do.
Yes, I agree that most of us probably have more than one issue. I started with Ankylosing Spondylitis over 30 years ago. My EM is secondary to my AS. I’ve also been diagnosed with Crohns and I have fibrosis in my lungs. Then last December I ended up with an unexplained case of Pancreatitis. FUN. All we can do is get by, one day at a time. I had to look up what SSS was because I’ve always had a problem with a deviated septum and narrowing nasal passages. I definitely don’t have what you have though. I hope your surgery goes well, SSS looks pretty serious.
Thanks. Yup stress has been pretty serious for the past ten years so I am sure it’s contributed to the conditions. I am a certified yoga teacher and teach mindfulness but most importantly I practice both. Doing the best I can and taking it one day at a time. It’s the only way. Thanks for your input
Forgot to mention my condition is silent sinus syndrome which is located in the sinuses not the heart. I read about sick sinus and it’s vastly different. Take good care
I wanted to ask about your Relapsing Polychondritis diagnosis. My ears became inflamed (rt worse than lt) and painful with a feeling of fullness about 10 months ago, extreme dizziness. I saw 2 ENT’s and dermatologist, no answers. Developed neurological symptoms 8 months ago, they think it is sensory Guillain Barre Syndrome (small fiber neuropathy biopsy positive). EM started 6 months ago. Anyway, my ear on the outer portion continues to be inflamed and painful with swelling. I know ears can be affected with EM but I am not sure that the cartilage becomes swollen. I go back to the Rheumatologist this Friday. My ANA was 1:320 with a smooth pattern. I noticed that sternal and rib pain can also be a symptom, which I have told the doctors about for months now. So far SLE, RA and SS antibody test are normal, ANCA is normal. I do have significant osteoarthritis in the back, shoulders and knees. How did they decide on your diagnosis of RP? I don’t want to wait until I have cauliflower ears and a collapsed nasal bridge for them to do something! I am 58 I was a gymnast growing up so kinda blamed my osteoarthritis on that.
Thanks for you response. I am sorry you too are dealing with a variety of conditions. I am going to have surgery next week and hopefully this silent sinus syndrome will be over!! Do you find that your EM is worse at night? Just curious because lately mine flares the minute I put my feet under the covers. Best, Harriette
So sorry that I haven’t replied sooner. I had some oral surgery recently and have been recovering. Sometimes I forget to whom I’ve replied and get confused.
My rheumatologist who is not the one who diagnosed the Relapsing Polychondritis. My original rheumatologist, who was the eldest of all in a practice he joined had diagnosed me. The young woman who now is my doctor thinks the diagnosis isn’t correct.
She didn’t say what it could be. As I said I have neurological problems due to MS but this doesn’t fit the bill for that. Even though my neurologist says that the EM is secondary to the MS! How is that for confusion!? I have had this for so many years, it is calming down lately but not completely gone. It acts up if I sleep on my side and my ear is against the pillow all night. My right ear usually as I sleep on that side. My ear gets hot and painful and is extremely red. To confuse me more is that my ribcage hurts so much but not all the time in conjunction with the ears. I think that’s the MS. As my muscles are always in pain in between the ribs and all over my upper back especially on the right side.
I am just trying to cope with the MS, Raynaud’s, EM and arthritis. (also aging isn’t helping me.) I’m 65 now. I have always felt “old” since I have been in pain most of my adult life. I also have degenerative disk disease with a ruptured disk in the lower back. I try not to over strain myself so the others do not rupture. I have several bulging disks since my early thirties. I’m not over weight and just don’t understand where I went wrong. I too have had mostly normal blood work.
The MS has gotten worlse in the past few years since I stopped taking the injections (Copaxone) thinking they were causing the EM. But it is not from the Copaxone. I was on the daily injections for 14 years without problems. I’m going to begin them again as soon as my stitches are dissolved and we know I have gotten rid of all infection in the gum and bone. (Root canal caused the infection.)
I’m so sorry for all your problems. My advice is to get one more opinion from another Rheumatologist without putting words in his or her mouth.
You need an unbiased opinion.
Not sure how long ago you had testing but maybe new lab is in order too.
Good luck to you. I come around here every so often and find I learn a lot from everyone and also don’t feel so isolated.
Hang in there Susie, may God bless you with less pain and more good days than bad.