I have started this thread to detail my treatment with Dr Amir over the coming months.
Some may already know my story but to recap I do not have an MS diagnosis.
I was initially diagnosed with ME/CFS in 2007 due to increasing fatigue, IBS and brain fog. Through 2008 my health deteriorated rapidly with dizziness, balance issues, crushing migraines and headaches, tinnitus, ear fullness, stiff neck and shoulders and a feeling of being 'spaced out'. This culminated in an episode some neurologists have since considered to be a TIA leaving me with numbness, pain and weakness down my right side that I find debilitating. I have not been able to lead a normal life since then.
I have been reviewed by several different neuros. All my MRIs are clean, no lesions, no Chiari Malformation, lumbar puncture also normal, CFS pressure normal. It was discovered I have what appears to be a hypoplastic RIJV but was told this is simply normal variation. Ophthamology tests are also normal, my vision has got slightly worse compared to six years ago but not enough to require glasses though I suffer with blurriness and bad depth perception issues.
I've had every variety of blood test, all autoimmiune (I have Hashimoto's hypothyroidism), all vitamins and minerals (severe vitamin D deficiency), MRIs all over, gastro tests, done all the CBT, pacing, heparin, steroids (which I couldn't tolerate at all), treated for apparent allergies with vaccines and various diets. Thyroxine helped with my hypothyroidism but I never really felt a lot better as I had hoped. I have tried all varieties of thyroid hormone and vit/mineral supplements without any success – nothing really seemed to fit my specific symptoms.
Neurologists I've seen think it's 'all in my head', 'CFS/ME' or want to apply the 'watch and wait' technique as they feel I may be in the early stages of developing MS before lesions present.
In January this year I was scanned for CCSVI with The EHC in Guildford and found to be positive, matching enough of the criteria for a diagnosis but they later declined to treat me as I do not have MS. I had further scans in April in Frankfurt which also confirmed CCSVI in my jugulars; my azygos looks clear on MRV but obviously I have not had an MRA so cannot be sure. It's worth noting I do not have signs of reflux in the IJVs but stenosis on both sides, each with malformed valves, which are not stuck together but are asymetric.
After much soul-searching, reviewing this forum and reading stories of others I decided I would wait for treatment and doctors' knowledge to progress before angioplasty. I am worried if I restenose or develop a blood clot in the veins I will end up in a worse position than currently. I also wonder why if I have CCSVI in both IJVs my symptoms are pretty much restricted to the right side of my body.
On Thursday I saw Dr Amir in Putney – I provided him with detailed answers to his online questionnaire beforehand and after examining my jaw, teeth and the muscles around my body, my posture and my cervical spine, he firmly diagnosed me with TMJ disorder and completely dismissed my ME/CFS diagnosis.
I have had TMJ problems for years, with jaw and teeth out of line. During 2008 when I fell ill I was having lots of dental work but also seeing an osteopath to help with my 'ME/CFS' and stiffness in my shoulders and neck. She didn't do much to alleviate my symptoms but snapped my neck around in a series of manoeuvres every session. Unfortunately I did not connect my worsening symptoms to her treatment as I was continually told it was ME/CFS, but now wonder if this is relevant, having discussed this with Dr Amir.
I performed a series of small exercises and movements with my jaw in the current incorrect position and then in the correct position and found lots of strange things happened like an increased range of movement and much easier breathing.
Dr Amir explained my symptoms link to the TMJ dysfunction and confirmed that my atlas is out of line and would address this. I already knew my C1 was displaced because I have had regular chiropractic sessions for three years. In every session my atlas was readjusted but never held for long. I think I know why now!
Dr Amir sent me and my husband away to think about everything we discussed before accepting his treatment. I thought long and hard (as we've already spent a lot of money on my health) and to me this makes a lot of sense given the number of years I've had a 'clicky jaw' and that my symptoms are focussed on the same side.
To 'back this up' I also had an appointment with a local oral surgeon who gave me a cortisone shot into the coronoid process that has greatly eased the awful nagging pain in my head, neck and shoulders on my right side, but I do not see this as a longer term solution and would prefer to have my jaw realigned for a permanent fix.
I return to Dr Amir next week to be fitted with the first dental appliance and will update once a month or so. He has estimated two years of treatment but that I should be cured of the 'ME/CFS' in three to six months. I can hardly believe this could be true because I've been ill for so long. Could it all really be down to TMJ disorder?
Dr Amir told me at the start of my appointment he was waiting to meet his first true ME/CFS patient after seeing hundreds. I wondered if it could be me but it looks like I'm just another 'fake'!
It would be interesting to have a further CCSVI scan once my treatment is complete to see how it compares. Initially when I found I had CCSVI I was extremely worried I was going on to develop MS in the near future. Dr Amir feels that early TMJ treatment (in all patients, not just in my case) could prevent this from happening.
Thyroid disease, Vitamin D deficiency, hypermobility, 'ME/CFS', CCSVI (stenosis both sides and assymetric malformed valves), TMJ - No MS but many neuro symptoms.