possible sjogren's or lupus???

Hello and thank you for getting back to me so quickly! I have has a few what I thought were severe cavaties to find out they were mouth sores and abscesses. My joint pain at time can be excruciating and the same goes for musclle pain. I do cough a lot and choke often. Horrible sleep patterns ans almost always wake at least once or twice or more. Fatique...i can do things for about 10-15 mins max and I am exhausted.

I also have several neuro problems like electric shocks in legs face arms , everywhere almost, migraines daily,

Recently had a 4 month bout with double sciatica and still have bad back problems.

I know excerise can help but I have Hidradenitis suppurativa where if I sweat I get abscesses the size or bigger of golf balls in my privates, behind and underarms. My dr says I am really allergic to exercise lol.

My worry is one autoimmune can lead to another and so on.

I probably also have FMA and am being retested for Lyme.

I feel like I am going crazy at times but obviously it is not in my head though I worry others may think that because I look fine.

I am so mad and frustrated and need to just talk to normal ppl and not drs if you know what I mean. I know many others have it much worse but I am at a loss as to why me.

I had a lot of similar symptoms to you. I have Behcet's which can cause ulceration in mouth and genital area. I wonder if you have had these sores swabbed to confirm what they are??

I also know that the mouth ulcers are common in Lupus.

I certainly think you have one of these disorders. They are all forms of vasculitis. Maybe you would benefit from speaking to Vasculitis UK. The problem is all of these disorders overlap in terms of symptoms. They are very difficult to seperate out.

I think you need a referral to a vasculitis specialist. Where in the country are you?? Are you in the UK?

I am actually in the US. I am now seeing a rheumatologist and a neurologist. It was my neuro who ran the bloodwork. My rheum is waiting to hear back from him. 

i also forgot to mentions for 3 years my entire palms and fingers have been bright red. I did have slightly raised liver enzymes but they are normal now.

How is your Bechets? I hope you are feeling okay and agian appreciate all your imput!

Ok I know less about the American system but the Vasculitis Foundation there woukd be helpful and could suggest a good specialist in your area.

With all due respect to neurologists, they were unable to diagnose me and I constantly hear this from friends in my help group. It is not a neurological disease so that is why they struggle with it.

Do yuo get the electric like shocks and mass numbness also?  SO many of these diseases sound so similar it is frustrating. I will look up vascullitis for sure. Thank you and wishing you well!!!

Yes ele tric shock pain for sure. Used to get it in jaw....up my face....in my groin....in my breaats. Awful. In ny ear too sometimes. Numbness I got all down one side of my leg. In my toes for about 2 or 3 years.

It stopped as did migraine after I went on a drug trial with interferon. In fact all symptoms stopped then.😊

I am currently on interferon again and mycophenolate. Symptom free almost completely for 3 amazing years.

The redness in your hands....wonder about Reynaud's. A lot of sufferers also have that. But also is it a sign of Lupus. Not sure. Do you have red rash in face or torso. Mind you I have that with Behcet's. It is so difficult this area. So many similarities x

I didn't know it was a sign of lupus. If in the sun i get red on my face but it is difficult to see. I am of Italian and Filipino decent so I have some color. Anymore I stay out of the sun at all costs as the heat makes me feel worse and worsen my symptoms!!! It also bothers my eyes to where I keep the drapes closed. Interferon sounds familiar. My sister just had a kidney transplant. I wonder if it is one she takes. I am so happy to hear you r are in remission!! And 3 years no less! SO wonderful!!!

Yes sun makes me worse too. Think this is common with vasculitis. I can get furious red rash in sun. I often think my symptoms are so like Lupus. Just the ulceration really that distinguishes it. But I don't even get that often. My symptoms are mainly neurological.

Just so glad you have a dx and the treatment is working !!! You seem like a very sweet person and have already helped me so much. I think you helped confirm  what I was thinking and now all I need is to hear back from one of mu ologist I just wonder with so many overlapping symptoms if they are somehow all connected but yet I know treatment is very different for each one.

I think you might find treatments are also similar.

If you do get a proper dx there is also a great group on facebook. It is private and you need to request to join . People on there are super helpful with great tips to share. I hope you get diagnosed soon and get treatment under way. X

Thank you so much and wishing you the best