Mystery autoimmune illness but which one??

Posted , 13 users are following.

Hey all,

I know no one is a doctor but I'm just looking to see if anyone has symptoms such as mine or if they can relate. I'd really like any direction that points to a diagnosis and/or possible relief that I can ask my doctor. I'll try to keep it summarized with my symptoms first then what tests I've had done (spoiler: 98% normal).

Symptoms started 1-2 years ago with waking up in the mornings with very sore joints: ankles, arms, etc.. I would try to exercise (regular cardio) but the next morning I felt as if I could barely get out of bed, my body ached so bad. Thighs started aching randomly a few months after and then I noticed the heaviness in my legs getting out of a friends pool. Very insidious.

Since then, body gets so fatigued I feel as if I'm carrying twice my body weight. It is extremely exhausting to walk around a department store or even shower. Also, my brain is not necessarily always tired, just more so my body. Since then, my left leg has become very heavy and it has caused me to walk off balance. Walking on it for long periods of time is very exhausting and my foot starts hurting. It also feels as if the arch of my shoe is oddly pressing into my foot. My face, fingers, thighs, calves, and feet will twitch (not all at once). I drop things and my arms ache so badly a lot of times it wakes me from sleep or I am unable to sleep. And I experience numbness in right side of face, forearms, and shins.

I also now have slasthma and Ménière's disease.

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  • Posted

    slight asthma and Ménière's disease***(posted before I was finished).

    Anyway, the tests I've had done are MRI of brain with and without contrast (3 times); cervical, thoracic, and lumbar spine (with and without); nuclear stress test; 5 EKGs, echocardiogram; nerve conduction test; blood work that tested for autoimmune diseases (lupus, RA, etc.), regular blood work, vitamin deficiencies, etc..

    Everything is normal except my SED rate which is 32 on a normal 0-20 for women my age (29). So basically that shows inflammation in my body but from what?

    I'm not sure if I've ever been tested for Lyme or not either.

    Anyone have any ideas?? Thank you.

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    • Posted

      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.

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    • Posted

      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.

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    • Posted

      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. ?

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    • Posted

      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.

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    • Posted

      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.

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    • Posted

      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
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    • Posted

      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!
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    • Posted

      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.
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    • Posted

      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.

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    • Posted

      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.
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    • Posted

      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.

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    • Posted

      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.
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