Hi everyone. I've been lurking for a couple of months now and have PM'd Cheer about "coming out" but still feeling rather shy about it. But I had a "eureka" moment this morning as I was waking up and I wanted to share with you all.
First off--I was only recently diagnosed (I'm 45) incidental to another health problem that has since resolved. But while they were scanning me for that, somebody noticed a few lesions and raised the red flag for MS. The only relapse I've ever had was 21 years ago, a time when MRI was only available to a few. At that time the best they could do was tell me that if it happened again, I might have MS. Well I worried over it for about 4 years. But it never happened again. Through the years I've had a few weird tingles and buzzes but nothing dramatic or that couldn't be attributed to fatique, muscle strain or whatever. So I stopped worrying about it. (In retrospect--my ignorance was a true blessing in disguise!!) I have a very low lesion load and only one lesion on the cervical portion of my spine.
So here's the eureka--at least for me. I realized that after that incident 21 years ago, I began to do something that I have literally done for almost every single night of my life since and that is to wear a bite guard for treatment of TMJ. I had suffered from headaches for years and also used to grind my teeth at night as a child and well beyond. I had braces to straighten teeth then all wisdom teeth pulled to keep them straight. That backfired and as my bite began to change, the TMJ got worse (jaw would pop out of joint and lock!). Maybe pulling my wisdom teeth was part of it but probably, the TMJ is really just a side effect of the way my skull is genetically structured.So 21 years ago, I got braces AGAIN--this time to correct my bite. And I have faithfully worn my bite guard/retainer every night since.
Anyone who treats TMJ will tell you that a host of issues go along with it from headaches to neck pain and so on--because the major arteries and nerve bundles to your BRAIN run very close to the mandibular joint. So I now I'm wondering if my jugulars have been affected by all the motion, distress, compression, etc that has gone on for me. I'm not saying TMJ caused MS--but rather that treating TMJ may have inadvertently alleviated stenosis of the jugulars..... Cheer's comment that Jeff, genetically, had very narrow space for jugular stuck with me and it was only this morning that I realized the timing of all this, at least in my case.
Well, I write this not knowing all the physiology involved. I will have a spinal and brain scan this summer. As well as an appointment with my TMJ doc who is great. I'm dying to know if my jugulars are affected but I think contacting Dr. Dake may be premature at this point. I was hopeful about the Buffalo thing but if they're not releasing results, I don't feel I would really benefit in any way so I'm going to wait it out. If they want to fly me up, I'd happily do it for the sake of science only but if I'm paying for a flight, I'm going west for some real answers!!
In any case--I would love to hear if anyone else out there has had TMJ or a similar experience. I know everything about this disease is wacky and that's why CCSVI holds such promise for answers.
I guess I'm officially de-lurked now. And so I can say, having secretly observed you for months....what a great group you are. You are all extraordinary folks.