Hope I don't have MS

[winterbird]

Thank you for sharing, grlwthprl. Your experience is very encouraging.

[mike1003]

MS is not a death sentence. Don't worry until you have to worry, wait for neurologist and see where it goes from there

[DoorCountyCrusty]

I posted a long reply. It is gone.
I had the same experience. It was diagnosed as trigeminal neuralgia for me. I went to a regular MD. and then a regular neurologist. It was never ever MS in over 30 years of disconcerting but liveable sensations.
Feeling of water running down side of face, to a hot burning on side of face, to a phantom loose hair on side of face. All symptoms from degenerative disks in my neck pressing on nerves that shoot odd sensations into my scalp, around my ear and into side of my face. Physical therapy prescribed by my doctors over the years for my neck has helped immensely in lessening these odd sensations. Good luck to you.

[winterbird]

DoorCC - wow! you're the first person I've heard (read) of having this sensation. From the neurologists to hospitality staff everyone stared and gave me shrugged shoulders. I felt like a crazy person as it was occurring every 20 min. or so at its peak. Thank you for sharing. I will be sure to research trigeminal neuralgia and share with my docs. I wish your initial post hadn't disappeared

Thanks mike
grlwthprl I forgot your
I really appreciate the encouragement, perspective and suggestions, everyone.

[lchoro]

It could also be encephalitis caused by a virus.

encephalitis

[MaryleeII]

WB


I haven't had MS or anything related, but I do have RA -- rheumatoid arthritis. I know what its like to try to get a valid diagnosis. Doctors want to say its stress, or the "white coat syndrome" or attention-seeking behavior, or trying to qualify for disability, etc. I found most had reached their level of incompetence and wanted to save face by blaming the patient


I finally got a firm dx when I went to a major medical center, in my case Methodist Hospital, Houston, TX I strongly suggest you find a teaching/research medical center to pursue a diagnosis. Please don't give yourself the following excuses:


* Its too far away. I've made many overnight trips, including hotel stays, for the best medicine. Its simply not something you will find in community-based medical settings.


*They would experiment on me.
They're not a bunch of evil scientists who will lock you in a cage and do Heaven knows what! They have more expertise with such conditions and see more such cases in a year than regular physicians see in a lifetime. They may offer clinical trials of new medicines, but the protocol for enrolling a patient in a clinical trial is extremely rigid, usually only after trying standard methods. The patient must be clearly informed every step of the way. There's no way they could conduct an "experiment" on you without your knowledge and permission.


*I would have students treating me.
While they are teaching institutions, the "students" are usually senior-level, MD in their own right, and under close supervision. They never make decisions of their own accord, that's done by the main doctor in charge.


*It would cost too much.
I've found you just pay your usual insurance deductible and copays.




How to find such an institution? Start researching! Ask your primary care physician for a referral. don't be afraid you might insult him. Too bad if you do---that's part of his profession, to work with other doctors. Check with the MS foundation, call nearby medical schools, etc.


I do wish you luck! Like another poster said, you can go bonkers guessing. You deserve an accurate diagnosis and appropriate treatment. Be your own advocate and insist on it!

[winterbird]

Thanks Ichoro for the link, and Marylee for the tips. I appreciate that

[DoorCountyCrusty]

As a former legal researcher I strongly suggest you contact the Adult Services Reference Librarian at the largest, hopefully a city or suburban public library near you, or the Medical Librarian of the largest hospital near you, for the most up-to-date reference information about M.Ds and hospitals in the location or specialty that you seek. You may not necessarily require a teaching hospital. Ask for the most recent, typically annual medical reference resources, either in database format or in hard cover reference sets located near the Reference Desk. Even some trade and popular journals have annual lists of best hospitals and best doctors often using well documented research to compile their annual lists. You need to be certain your M.D. is well credentialed, board certified, and without any professional disciplinary actions on record. I once checked several resources for a specific doctor, found he was highly recommended by many patients and then discovered he had been disciplined for drug abuse. It is always best to be informed, not just a referral from your present doctor but from professional medical associations and organizations that compile data on doctors so you can make a well informed choice. I have also found that Tier One Trauma Center hospitals across the U.S. because of the necessity for treating any type of traumatic injury that comes through the ER door, require highly skilled physicians. The complexity and demand of these medical emergency issues seen may require a high caliber medical staff across the entire hospital.

[vkhmini]

Originally Posted by winterbird

DoorCC - wow! you're the first person I've heard (read) of having this sensation. From the neurologists to hospitality staff everyone stared and gave me shrugged shoulders. I felt like a crazy person as it was occurring every 20 min. or so at its peak. Thank you for sharing. I will be sure to research trigeminal neuralgia and share with my docs. I wish your initial post hadn't disappeared

Thanks mike
grlwthprl I forgot your
I really appreciate the encouragement, perspective and suggestions, everyone.

My two cents, if it is trigeminal neuralgia -- I suffered with this for about six years. A feeling that is described by people as something like being tasered in the face, electric cattle prod to the face and lots of other imagery that's similar.

I was having two or three flare-ups a year, lasting a couple of weeks each time, with several attacks of electrical shock-type pain daily that brought me to my knees. Often, the attacks were most severe when I was lying down. After one night of no sleep because I couldn't lie down, I went to the ER and was prescribed carbamazepine, which eased the pain some but brings with it the potential for very serious side effects, especially when it's prescribed to elderly patients.

Trigeminal neuralgia is colloquially known as "the suicide disease", because so many people who have it choose to end their lives rather than live with the agony. It can start in a very subtle manner and gets worse with time. The trigeminal nerve, or fifth cranial nerve, is the nerve that has three branches, and the one that the dentist puts the novocaine into to numb you for dental work.

I was using a TN support group on FB when a member told me about a chiropractic technique called atlas orthogonal. Only certain chiropractors are certified to do this, and all the chiropractic adjustments I had prior to finding a qualified practitioner were useless or made it worse!

The atlas is the top vertebra of your spine, also know as the first cervical vertebra or C1. When it gets out of alignment, it can press on the trigeminal nerve where it emerges from the brain stem, causing anything from odd sensations to searing pain in the face. Atlas orthogonal or AO is not a quick fix by any means -- I was getting adjusted twice a week for the first several months. In April, I will be two years from my last serious flare-up. Sometimes, if I accidentally bump my head and knock my atlas slightly out of alignment, I get mild symptoms and often they subside without having to have an adjustment. I'm now at one adjustment a month and as long as I don't bump my head, I stay pain free. My chiropractor says that my atlas will probably eventually stay in proper alignment and I will no longer need AO adjustments.

The process of determining if you are a candidate for AO, if your atlas is out of alignment, is fairly easy, quick and not prohibitively expensive. My initial visit was about $150 and then I had a set of very special digital x-rays which cost me $90. Each of my adjustments cost $40. The AO technique is absolutely non-invasive and pain free, involving a gentle touch. No neck cracking! (neck cracking made my TN worse!)

There's a great book on Amazon called "What Time Tuesday?", written by a man who suffered from TN and was planning his suicide when he was referred to an AO practitioner and found immense relief!

If you are interested in hearing more, or need help locating a qualified TN chiropractor, please feel free to PM me! Best of luck to you in dealing with this awful condition!

[guidoLaMoto]

Originally Posted by vkhmini

The atlas is the top vertebra of your spine, also know as the first cervical vertebra or C1. When it gets out of alignment, it can press on the trigeminal nerve where it emerges from the brain stem, causing !

You're right about how nasty Trigeminal Neuralgia can be, but I'm not so sure you or your experts are right about it's relation to the atlas. They're not all that close. https://en.wikipedia.org/wiki/Trigeminal_nerve


For anybody contemplating chiropractic manipulation, remember that the atlas is the bone in your neck that a Hangman's Knot is calculated to snap efficiently to cause a sudden death. At least it's supposed to be painless. (How do they know?)


The openings for the trigeminal nn (V) are the holes a couple inches in front of and off to the sides of the large hole for the spinal cord, around which the atlas sits. There's actually 3 holes for the branches, marked V 1,2 & 3 in the picture.