Newbies and Limbolanders advice.

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Regular Member

Date Joined May 2006
Total Posts : 137
   Posted 6/23/2006 12:35 PM (GMT -6)   

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! 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

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.

New Member

Date Joined Jun 2006
Total Posts : 7
   Posted 6/23/2006 12:57 PM (GMT -6)   
I think I would be more accepting of a dx of "you had a transient ischemic attack or a stroke" and you are recovering nicely instead of "I don't think you have MS" dx.

If it were not for my GP mentioning the possibility, I would never have thought that this is what happened to me. But, I have all of the classic symptoms, just not enough lesions or positive tests to meet the McDonald Criteria. So, I never wished this health issue (I was a strong healthy active 40+ female) and I was proud of my ability to be stronger than my teenage daughters and woud challenge them at any physical activity (even though I am a smoker).

There can be no other explanation for my symptoms (since nobody is offering any other ideas) and it would be nice if somebody could fix what is wrong (calf burn, blurry vision, fatigue, etc), through therapy (since I HATE TAKING MEDS), but this is not the case. So...... I sit and wait (not wishing) for another attack so that I could begin preventitive therapy.

I know that you have been down this road and you and understand, but I appreciate your thoughts and positive attitude for the rest of us in Limboland.

Regular Member

Date Joined May 2006
Total Posts : 137
   Posted 6/23/2006 3:29 PM (GMT -6)   

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 wonderful
family. I am or was at this point, very active in sports, my community, my
faith, 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 doctor
that is not bias, not clued to the Mc Criteria, not clued to taking a radiologist
word, and is not afraid to look outside the box.

And don't hesitate to jump into a rhumatologist, or anybody else that might get
you to a victory. I just heard from an individual that went through a rhumatologist
and ended up at a neurologist that was recommended by the rhumatologist. He went
there with all of that doctors tests that obviously ruled out stuff on his end......and
that started a serious look at her symptoms by a neurologist. She got a verdict after
5 months that she indeed has MS.


Regular Member

Date Joined Jun 2006
Total Posts : 74
   Posted 6/23/2006 4:50 PM (GMT -6)   
I totally understand your point on dealing with the symptoms, which thats what go me to the GP in the first place. And because he didnt know how to deal with my symptoms sent me to a neuro. First neuro just said to put everything off and repeat MRI in 6 mo, thats when we went for a second opinion. At least the 2nd neuro was attempting to handle the symptoms. For the most part the headache that lasted 56 days, which is the gawd awful truth, I said please just make the headache go away. We were hoping once the headache subsided the rest would maybe magically go away. Not even close. lol For the most part i can deal with my skin crawling off my body, numb face, muscle weakness. But on the other hand there has to be a reason why. I can see a headache cause nausea, vomiting, seeing spots, but dont explain the lesions, they have to come from somewhere. If the next neuro makes us wait and wont treat the symptoms we are gonna keep going to a new one how ever long it takes.

Veteran Member

Date Joined Jun 2005
Total Posts : 2135
   Posted 6/27/2006 6:25 AM (GMT -6)   

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.

Running to doctor after doctor may SEEM reasonable...but every time you do that, remember that you'll have to "start fresh" -- the doctor will look at you as a "new patient", start all the testing all over again, and delay the diagnosis, in the long run.
Staying with ONE doctor-- and reporting that symptoms are continuing, or worsening, or new things are appearing --
reporting it by calling regularly and often, or making an appointment, or writing/faxing/e-mailing
will serve you MUCH better in the long run than doctor-shopping.

...I am not a doctor, nor health professional, and don't pretend to be one, here.....

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