First of all you are in the right place.
Second and VERY IMPORTANT. Maybe the most important thing of your long road
to find out what is wrong:
Address your symptoms first not what is causing them. Seek help to ease your exhaustion,
control your depression, control the pain, or whatever is making your life miserable, uncomfortable
and dis-functional. AND AGAIN......DO THIS FIRST! Go to any doctor. Tell them you are miserable,
tell them you can't think, you are weak, you are feeling needles and pins, pain in the neck, can't sleep,
you can't function at work or whatever the symtoms are and you need help....today! If he won't do anything
walk down the street until you find one that will help you with the symptoms. Seek support from every available source in your city and state, and on the net. It does help and its no time to be meek and afraid to talk about it. And seek counseling if the world is falling apart.
DON'T let them pursue the mystery UNTIL you are treated.
It is a lot easier when you can control or stabilize at least some of the miseries of an Autoimmune problem or any health problem, while you go down the road to find out what it is and it makes all the testing a bit more tolerable too. Depression is huge with MS symptoms. If you are at least somewhat in control, and can deal with the symptoms, instead of letting them over take you, you find the road a lot easier to travel and depression will not drive you into oblivion.
Diseases like MS, and others with like symptoms, mess with your senses, your emotions and your body. They can overwhelm you. If you add to that, the frustration of time, and doctors to someone that is already overwhelmed....you
have and equation for serious mental and physical pain. So it only makes sense, to start with the symptoms...control and
ease what you can, then you can deal with all the other stuff you will endure.
And finally, be open minded. After reading hundreds of forum letters on this site and others. It appears that
MS is at the top of list of some kind of weird Christmas list. I have been where you are, I have been where you are going. But I spent all that time and frustration hoping that I did not have MS, not the other way around. That somehow, somewhere, it was going away, or that I had an injury somewhere in my life that created this problem and can be fixed....anything but MS or possibly worse. It doesn't appear that I will be that lucky. But hopefully you will be. Nobody should have, much less want MS. I can't remember reading anywhere that someone enjoyed the experience of MS so much they would highly recommend giving it a try. Yes, there will those of you that do and they can prove it quickly, yes there will be those of you that do that take years to prove, yes there will be those of you that I am sure have it, but it will never be proved. And......there are those of you, that will not have it as it is known today. I am sure that there are a bunch of
kissing cousins or variations of MS that will be found in the future.
Pursue the course of action that you need to follow, but as I said......take care of you first, then start down that road. And understand that it can, and most likely will be, the longest and most frustrating road you will ever travel.
Well, that's my point of view from one that has recently been there, done that. I hope that it is of some use, because I do know, that I made mistakes that nearly destroyed me at one point and if I can help just one of you from doing the same, I know you will make it through this trial in your life.
For what is is worth... I will add
I am 6'1" 192 lbs and 58 years old male, no health problems up to now.None. Broke and arm or leg skiing, playing football etc. That's it.And by some standards I am considered successful and have a wonderfulfamily. I am or was at this point, very active in sports, my community, myfaith, and the business world.
How many times did I hear that I was too old, or that the signatures on my MRI were from "Age related" items.....or mini strokes,or even that I was male? More times than I can recall.
But just like the Neurologist that told me it was my blood pressure medicine...they are a scourge.
Still, the same words of wisdom apply. Deal with your symptoms first, the doctors later. And keep going down the street until you find a doctorthat is not bias, not clued to the Mc Criteria, not clued to taking a radiologistword, and is not afraid to look outside the box.
And don't hesitate to jump into a rhumatologist, or anybody else that might getyou to a victory. I just heard from an individual that went through a rhumatologistand ended up at a neurologist that was recommended by the rhumatologist. He wentthere with all of that doctors tests that obviously ruled out stuff on his end......andthat started a serious look at her symptoms by a neurologist. She got a verdict after5 months that she indeed has MS.
While I appreciate your frustrations, and sympathize with being in limbo, there are at least three flaws in your theory:
1. Not all symptoms ARE treatable. Many of the sensation things, like numbness, tingling, buzzing sensations -- don't always respond to treatment.
2. And without knowing the CAUSE of the symptom, the doctor is reluctant to treat it, because a medicine that might treat the symptom of one disease might do you great harm if you have something else wrong, causing the same symptom.
3. Treating symptoms without knowing the cause can hide that symptom, and it might be the very thing that the doctor needs to observe -- over time -- to determine what is the cause of your problems. If you hide it with drugs or some other treatment..then it delays the diagnosis process.