Mystery autoimmune illness but which one??

Well it does sound auto immune to me. And I think the menieres and mild asthma could be part of the symptoms to be honest. I was treated for asthma for a long time and I don't have it. But I do have an auto immune disease.

It is too hard to say what specific type it is. So much overlap. You don't mention ulceration so I don't think it is Behcet's but could be Lupus. You don't mention dty eyes or mouth so doesn't look like Sjogren"s. And yes ms also comes to mind but a lot of my symptoms are ms type symptoms......oh and I used to always get the dropping things symptom. My grip was really dreadful at points. You just meed to see a specialist who can give you a proper diagnosis.

Yeah I've never had asthma in my life until this all started. It's so weird.

What kind of specialist should I go to? Do they make ones for general autoimmune diseases or only specific?

I've been to 3 neurologists so far. This one looked right at me and told me she was lost. I don't mind having an autoimmune, I would just like a dx so I can maybe get some medicine to help and move on with my life, ya know? It's so frustrating.

Someone mentioned Lupis. I have an autoimmune disorder called Dermatamyositis which is very much like Lupis but with Lupis you don't get a rash and with Dermatamyositis you do get a rash. I would suggest that since your Doctor isn't able to diagnose what is wrong with you to go and get a second opinion from another Doctor!! I can't say what is going on with you I can only speak to my own experiences. With my diagnosis I see a Rhumatogist a Dermatologist AND an internal medicine doctor. You might see about getting a referral from your doctor to an internal medicine doctor as this type of doctor would be best to help you figure out what the root of the problem is. I wish you luck in getting a diagnosis so your mind will be more at ease.

Cindy. ?

Hey yes I know the problem exactly. The problem is if you have something similar to me this is not a neurological disorder. It is auto immune auto inflammatpry. Your sermingly neuro problems are being caused by inflammation. Does not show up on mri or any other sorts of scans. My brain is apparently 'pristine' I was told by a neuro. They were baffled by me.

You need to see an immunologist or specialist in vasculitis. I could recommend someone in uk but if you are in the US I would say contact Vasculitis organisation in the U S and ask where to go for diagnosis. I cannot cut and paste here unfortunately but if you google Lupus effect on central nervous system you may gain a better understanding of your symptoms. Lupus is just one form of vasculitis there are others.

The problem with these disorders is they are connective tissue disorders which can affect the internal organs (hence problems with thyroid or heart and or lungs). They can also affect cns hence numbness problems with balance migraine etc. They can have wide ranging symptoms. Very tricky to diagnose. Blood wprk often unremarkable. Quite often diagnosed on history.

My major problem related to inflammation of the brain stem. With treatment I have no symptoms. Diagnosis was life changing.

Yes wow! My thyroid was also low and I've never really had thyroid problems before. I'm polycystic (ovarian syndrome) so it's been tested before but only showed that my testosterone was a little higher (due to PCOS). It was never low and now it's low. That was the first thing they found. I take medicine for it now.

I also get a lot of chest pain too they can't figure out why. So it definitely has affected my thyroid lungs and heart. I'll definitely look into it thank you so much.

Thank you!

I'm going to make an appointment with a rheumatologist to see if maybe they could help me.

I was tested for Lupus and it came back negative.

hi i was just going to suggest lymes when i saw you had mentioned it. you may have been tested for it but if it was only sent to your local lab it wasnt tested properly. it has to go to porton down lab on a special blood form ( GP has to print this off fill in symptoms and ask for testing for co infections) if you need any info on this let me know. also public health england and lymes disease action websites are very good

Thank you. I'm from the US tho. I am able to look up every test online that I have had on my medical record. Do you know the exact name of the test?

When you said all your levels were fine I had presumed your thyroid levels were ok too. I have hashimotos and have a LOT of symptoms. Some are worse than others and some are all day every day like sensitivity to cold and freezing hands and feet. They get quite painful for me. I also have fatigue, bone pain, prolonged cycles, weight issues, pins and needles, hair loss, headaches. List goes on!

Hi interested that you were tested for Lupus and it was negative. There is no absolute test for Lupus. If you are talking about ANA it is often negative even if you have it. Lupus is often diagnosed on history.

I did not know that! Thank you! I read somewhere that there was a lupus test and my 2nd neuro told me it was negative.

Yes sadly this seems to be very common. I think there is a lit of bad practice in this area which is very unfortunate for people who are suffering and unable to get access to treatment. It is generally a poorly understood area.

I have Behcet's not lupus. My esr and crp are only ever slightly raised. I do not test positive in any other bloodwork and yet I have a diagnos9s confirmed by 4 different consultants. This is so often the case.

I knew that about Lymes but not Lupus.

I'll look into it. Thanks!

I get chest pain too. It can come from various causes. Inflammation of the heart lining or costochondritis which is inflammation of the cartilage in the chest. Heart murmurs too. But this is usually reversible through treatment. You may also find that you get palpitations. They are mostly superficial things but painful and uncomfortable.

Yes, I do get palps. I also get a skipped beat feeling. I would have some here and there before this but they come like clockwork now. So scary. Idk what kind of autoimmune can do all of this but it's doing it. So frustrating.

Yes I know. It is a lot to contend with right. But I am currently almost symptom free. Treatment can help a lot ☺

That's what I'm hoping for! I'd love to get back to living my life.

Have just joined and following this, I have similar symptoms without burning sensations, feel beside myself. Have had Mri,ct, lumbar puncture, bloods, Lyme disease, and copper checked all negative. Also have under active thyroid because of auto immune. Everything seems to take so long, tests and results. Will,look up your doctor in London.