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Vasculitis UK
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Mostly dizzy, waiting for a diagnosis, and looking for answers

I don’t know where or how to begin to describe my journey, because after reading the many posts here, seems I may have been battling more than I realized. Over three years ago I started having benign positional vertigo; however, I started to feel dizzy throughout the day. Then, I started experiencing facial and temple pain. After seeing many doctors, I went to University of Pittsburgh (in the US), had hours worth of testing, and was diagnosed with Migraine Associated Vertigo (MAV). Was told my vestibular system and right ear were damaged—though, at the time, my hearing was fine. I’ve tried every drug to treat the MAV, with no relief from the dizziness or temple pain. I have chronic ringing in my ears, and now have developed some low frequency hearing loss in right ear, which doctor said you see in autoimmune disease. For many years, I have suffered from dry eyes, and multiple corneal abrasions (a layer of cornea pulls off)— extremely painful. Last summer, my eye doctor referred me to a rheumatologist, as she suspected Sjogrens. My blood work revealed positive c-anca, ACE, ANA, and 1 25 dihydroxy vitamin D. I was sent for chest X-ray and lip biopsy, which were negative. Had pulmonary function test, which showed a slight decrease in the way my lungs diffuse— was told it’s not terribly abnormal. I had awful right hip pain for over a year, which cleared after 8 days in prednisone. The rheumatologist initially thought Sjogrens, but the blood tests point to a gramulatous disease. He’s mentioned limited Wagner’s, and possibly GCA. I had an ultrasound of the temporal arteries—negative. Next week a PET scan. I also suffered with shoulder pain and stiffness for over two years. I had three rounds of cortisone shots and physical therapy, which didn’t seem to help. Over time, it simply improved on its own. My bigggest issue is the pain in my temples, dizziness, nausea, and ringing in ears. Also, over two years ago, was diagnosed with gastritis (bleeding in stomach), after having an endoscopy. I’m waiting to see a specialist in NYC. Does anyone else have chronic dizziness?

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Yes! First of all, so sorry about all you have been going through. I relate completely. Like you, the dizziness and light-headedness are debilitating. I have had right ear fullness, pressure, pain, nausea and severe headaches for 16 months. I had high hopes that a temporal artery biopsy last week could explain it. Yesterday it came back negative for inflammation. So frustrated! I’m now scheduled to see a TMJ specialist on the outside chance he can help.

I use lots of ice packs when the dizziness hits to help with the head pain that follows. Have to treat each symptom separately for relief. I’m scheduled to see Cleveland Clinic’s Functional Medicine team next week. I’ll post if they are any help.

I wish I had more suggestions for you right now. Don’t give up hope. There has to be an answer for us somewhere!!

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Thanks for replying! I was going to go to Cleveland Clinic, but decided on a doctor at Hospital for Special Sugery in NYC, as he specializes in vascilitis diseases. Hope you get answers in Cleveland! Keep us posted.

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There is a difference between Vascular surgery/ surgeons and Vasculitis which is usually managed by physicians with immunosuppressive medication.

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Yes, thank you. My specialist is a rheumatologist, who specializes in vasculitis, and other autoimmune diseases. The name of the hospital he is affiliated with is misleading; however is prestigious.

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Hi Canygirl61.

My appointment at Functional Medicine Cleveland Clinic is tomorrow morning. My Pulmonologist At CC Hospital was “perplexed” after a week of tests (😢) so got me in here. Normally a 6 month wait! I’ll post once I’m home.

If I can help you with any info about CC in the future, let me know. I’m learning a lot. My team of specialists is also growing in numbers!

Let us know how your NY appointment turns out, ok?

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Just to be completely transparent. ..I am not a Dr or have a medical background. I do have CNSV (central nervous system vasculitis) which does have a lot of the symptoms you describe. It doesn't usually show on many tests (ANCA for example) but can be secondary ie. Associated with another vasculitis. I am not saying that is what you have but might be worth discussing with the right professional. Have you seen a vasculitis specialist or neurologist? That sounds like the next step. Keyes on the team here has medical expertise and will no doubt offer advice 😀

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Sorry...for some reason the replies didn't show until I posted. 😀

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Melon, thanks for your response. I’d like to hear more about CNSV— sorry that you have this.

I’m under the care of a internist, neurologist, ENT, rheumatologist, and pulmonologist. The neurologist was treating me for MAV, without success. She was at her limit, in terms of medications she uses for migraine. I suggested many times that I doubted the MAV diagnosis. It wasn’t until I saw the rheumatologist, and had blood work that indicated an autoimmune issue, that other diagnosis was considered. The pulmonologist suggested neurosarcoidosis. The PET scan may reveal answers.

I wake with a headache, almost daily, which improves after I get up. I’m exhausted, because I never sleep well, because I have the sensation that you feel if you’ve had too much to drink— without having anything to drink. My sense of balance is not good either.

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CNSV is rare and difficult to diagnose as it it more often diagnosed by what is not seen in the tests in the case of Primary CNSV. There is a description of it in the route map. To describe it basically it is like MS with migraines. Have you had a mrI of your brain? H 2 Flares can often be seen.

I get migraines with visual disturbances, lethargy, limb and joint pains, pins and needles, sensation of hot patches in legs, cold extremities, extreme dizziness even when still, super sensitive hearing occasionally, brain fog, word confusion, etc. Oh and extremely brisk reflexes. Latest development is nystagmus which is getting worse.

My condition is comparitively mild (low grade). There is someone on here (whose name escapes me atm...begins with V) who has contributed a lot to the group and has recoded a lot of info about this disease. Hope that helps and you get some answers soon. 😀

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Wow! I feel like you just described my weird conglomeration of symptoms. I did have a brain MRI almost two years ago. I’d have to go back and re-read the report. I know there was mention of “flares in white matter,” which they said you often see in migraines. It did mention also seeing in MS, but the doctors have been focused on migraine. My symptoms have gotten worse since the MRI, and we are only know looking into other diagnosis, given my blood work. Thank you for the info.

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Hi Melon,

Just following up. Last week, I had a head-to-toe PET scan, which came back clear/normal. This Friday, I’m having a brain MRI with contrast (ordered by neurologist). Was your MRI what helped your doctor(s) diagnose you? Did you have positive ANCA? My primary doctor thought the PET scan would reveal something, and was very surprised by the normal findings— though relieved too. He said my case is “bizarre” and that he’s not giving up on me.

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