For those in Limbo or Newly Diagnosed

[HVAC]

This is not written from a medical perspective just as a person with MS. I am trying to call it like I see it nothing more. Basically in MS signals going to and coming from the brain get cut off giving all kinds of sensations from paralysis, burning, numbness, stabbing, shocks, creeping, and buzzing.

First of all MS is as different as there are people with MS. There are 4 kinds of MS. Each person with MS follows their own unpredictable pattern.

Most start out with Relapsing Remitting 85%. The Disease Modifying Drugs work at th beginning and are only FDA approved for this group. So if you are told by your neurologist you have had MS for a long time or have Primary Progressive the DMDs will probably not be an option. RRMS is marked by periods of inflammation and remission. It is not a true remission damage can be done even with out symptoms.

10%  of people with MS mostly folks in their 40's will start out with Primary Progressive. You do not present with attacks, you just notice it you can't run like you used to, then it gets a little harder to walk. There are fewer brain lesions with PPMS and the lesions do not enhance. It is more degenerative than inflammatory. This is a harder diagnosis to reach since it is subtler.

Most people  with RRMS and PPMS then at some point go into Secondary Progressive. For those with RRMS their disease often levels of at this point.

Rarely people go into Secondary Relapsing MS 5%. this is the rarest form. It is secondary MS but with relapses.

Here is the kicker just because you are labeled into any of these 4 groups no MS Specialist can predict how your MS will affect you. EVERYONE"S MS IS UNIQUE. We all have different symptoms. It all depends where the damage occurs and what pathways get cut off.

For the Newbies MRIs show very little. They show some white matter damage and atrophy but they do not show gray matter damage. The Neurologists still get a lot of their information the old fashion way from the neurological exam.

We on the forum share experiences and then again none of us has the same exact symptoms or problems. Also humans are complicated machines. Just because we have MS everything wrong is not MS related and it is sometimes complicated sorting it out. Also the way we move because of MS sets us up for other problems with our bodies trying to compensate. I have developed knee, back, and neck problems from carrying a weak side. I have Asthma, allergies, and migraine which has nothing to do with MS.

Symptoms sometimes do not always correlate with where lesions are located.

You also may think if you are not diagnosed a diagnosis will solve everything. It is more like the beginning of the journey. Sometimes there is not a lot that can be done and sometimes you have to make choices between say pain and drug side effects limiting driving.

What we can do is give you our experience, strength, and hope and answer your questions as best we can.

It is important to take care of your over all health. I diet, exercise, see a counselor, and try to get  not to little not to much sleep. I try to keep an open communication with my husband and I try to consider his needs. It is easy for me to get caught up in my own disease.

Alex

[Mike_Shuswap]

Alex, well done and thanks.

Is there any way this can be copied in the limbo lander group? Although on second thought, I bet all limbo lander participants follow the MS forum anyway.

I agree with Q, this would be a valuable addition to the health pages.

Mike

[Quixotic1]

Alex this is a great way of covering the commmonest questions we get about MS' overall behavior.  thank you.

There is one typo you might want to correct and that is the

Rarely people go into "Secondary Relapsing" MS 5%. this is the rarest form. It is secondary MS but with relapses.

This should read that Rarely people have Progressive Relapsing (5%) which is the rarest type.

Thank you for doing this.  It would make a nice addendum to the Health Page on A General Discussion about MS.  Or it could stand alone on it's own.

Quix  :))))