what type am i?

[nate79]

I was recently dx with ms 3 mo ago positive spinal tap + 2 brain lessions.  31 yo male.  Had a bout of ON that cleared up mostly.  Some minor tingling in both hands and feet.  While the tingling has gone away, my hands and feet are still slightly sluggish.  Only I notice this and there is no sign of limp.

I had a 2 mo period wher I had no new or worsening syptoms.  Then a month ago over the course of a couple of weeks I noticed increasing bilateral leg weakness and tickly feeling but no sx in the hands this timer .  The tickly feeling comes and goes but stays for the majority of the time.  At around the same time I also noticed I was having worsened constipation and have a hard time starting urination.  After a month of these sx I have noticed my legs feel a little less weak and are tingling less of the time.  I have a thorasic mri cause my nuero thinks I have a spinal lesion

My question is does my course sound like relapse remitting or ppms.  It seems strange that both of my worsening periods were really mild when comparing to other peoples attacks I have read about.

1. With as mild as the attacks were it seems strange to have residual hand and ankle weakness.  

Anther thing that is puzzling me is that it took so long for the sx to hit their full end point. (2 wks).

Sorry for the length, thanks to anybody who responds.

[jujuminx]

Welcome Nate. Sorry to hear about the dx.  As you have probably figured out by now, MS effects everyone differently. The vast majority of people are dx with RRMS since it's hard to really dx PPMS until a period of time has elapsed.

RRMS doesn't mean that you are symptom-less or that your sx cannot get worse. Sometimes sx stay but for many of us they diminish and/or go away (but it may take months). Of course the nature of the disease is that it eventually comes back in one form or another, hence the relapsing part of MS.

Since hot weather can bring on sx and we are getting in to a period of time where temperatures are rising, take care to keep yourself cool.  Stress and over exerting yourself can also bring on increasing sx. You don't have to go into a relapse to have a change or increase of symptoms.

It will take time to get use to your new reality and sometimes that changes each day. I am about 8 1/2 months out from my diagnosis and I can tell you the awareness of each and every sensation that I don't consider "normal" has calmed. I use to have sensations throughout the day just in differing degrees. Now I rarely have them.

I know it hard waiting to see how this is going to effect your life.  The ironic thing is that while you are waiting, life is moving forward and you don't want to miss that do you?  I promise there will be more and more times you forget you have MS and your life will get back to your new normal.

Take care and good luck. I am looking forward to reading more about your journey.

Julie

[nate79]

Wow Alex, you are very active.  That is encouraging to me.

Thanks for the warm welcome Lulu.  I guess its true that nuerological time is slow, just hard to wait and see what its going to do.

Nathan

[Lulu54]

Hi Nate and welcome to the forum here.  I hope you will find the information and company useful and you will return often.  Right now you are trying to process the information about having MS, both emotionally and intellectually and you don't need to be worrying about what type you have on top of everything else.

You will quickly learn that neurological time moves slowly ... I mean really slow.  So take your time in processing all of this, make a list of quesitons to ask us our your doctor the next time your are there, and I'll look for you around.

I'm sorry you join us in this club, but keep in mind it could always be something much worse.  best, Lulu

[HVAC]

Nathan,
  I have had MS since I was probably 2 years old. I did very athletic work, commercial HVAC and Veterinary assistant. I was a cyclist. I have slowed a bit and gave up cycling because my balance is not so good for that. I still have my strength. I am slower and I tire easily. I will spend several hours at the barn today and ride for over an hour. I walk several miles a day with my Service Dog in Training and run around the back yard with him.

Everyone with MS is different. The whole ball game is where a signal gets cut for good. No one can predict which one will be cut or when. I use to worry about what would happen. Now I think every day I can get up walk, see, etc. is a gift not to be wasted waiting for the other shoe to drop.

Yeah once something starts for me it pretty much stays. I do have periods where the symptoms are a little more noticeable. Gradually one more symptom is added. Even people with PPMS are different.

Wow it is good the kid is diagnosed. In the 1960's they did not think children could get MS. No one knew what the problem was. I could not read until college, sports were awful because of double vision. No one understood my cognitive problems. Finally I was labeled Psychiatric and put in State Hospitals on heavy, nasty medication in my teens. Then under the side effects of medication I got labeled with more stuff. It became a thirty year nightmare until I avoided Doctors like the plague.

It had a happy ending my PCP realized I had MS and sent me to a Neurologist. Also a Psychiatrist took me on for free as a project. He is brilliant. He too thought my problem was neurological. He stuck with me through my two year diagnosis. He firmly took away the Psychiatric label as did all my other Doctors.

I was glad to find out I was not crazy, lazy, and there was a reason things had always been so hard for me. There was an up side to not knowing I had MS. I had to work hard to overcome every difficulty and what is hard for most folks with MS is easier for me because I had no choice but to overcome it.

I am a happy person. I hope your student can go a long time being mobile.

Alex

[nate79]

This is such a strange disease!

Alex, thanks for all the info.  Wow so you have had ppms most of your life? I teach at a high school and my favorite student has had ppms for quite awile and is walking unassisted.  So once you start getting tingling in a limb, it never goes away?

Kerrtelli sounds like you dont fit in the norm either.  Like anything in ms is a norm.

God bless

Nathan

[HVAC]

PPMS is Primary Progressive MS. People either start with Relapsing Remitting MS or Primary Progressive. Primary Progressive is much more rarer than Relapsing Remitting. The progression is harder to slow. The regular DMDs are not FDA approved because they did not work in trials. It is not as hopeless as it once was with Gileyna on the market.

The word I would use for PPMS is subtle. I did not go to Doctors and say I have such and such symptom something is wrong. They said to me you have something very wrong and I thought they were all nuts. I had six Neurologist over two years say it had to be MS but no one would diagnosis because it was not classic with attacks. I got a second opinion after my final diagnosis because I did not think I had MS. I had never had an attack or an exacerbation. I just did not fit with anything I heard on the forum. No attack, no steroids, no calling the Neurologist between 6 month appointments. I had all the symptoms but they slowly developed over 46 years it was too subtle to notice.

It is confusing.

Alex

[meg321]

You both confused me, but then i am easily confused.  What is PPMS ?  

meg

[kerrtelli]

I was wondering the same thing.  I was just told probable ms.  I have had symptoms for three months.  Haven't had amy remittance yet.  I am not on any medicines either.  Walking long distances is hardeer and harder.

I am 40 and have probably had this for a while.  Just now am showing real long term symptoms.  Have had two attacks within 5 years and MRI's show legions back then and now.  

Trying to find out how to plan for the future.
Grasping at straws.
Kerri

[HVAC]

Most Neurologists do not diagnose PPMS for a year after diagnosis.

I knew I had PPMS after I was diagnosed even though I was not diagnosed with it for another year. I did not even know I had MS it was so gradual. It was my GP who noticed my Neurological symptoms.

I heard it described as you notice you can't jog as well as you used to, then months later your walking is slower.

My symptoms never go away they just gradually get more stuff added on. Sometimes I have to think am I imagining this new symptom it comes on so gradually. In over 40 years of MS I can only point to one thing that could have been seen as an attack and that was at the very beginning when I was sent to the Mayo Clinic for some weird Neurological disease no one could figure out as a baby.

PPMS usually has fewer brain lesions. I only have three or four. ON is usually not the first symptom. Although it can be a symptom. It usually is picked up in your 40' or 50's. My theory is that is when It has picked up steam and is noticeable.

Of course all these are not hard and fast there are always exceptions. Every case of MS is different.

There are two processes in MS. Inflammation which comes and goes and with it symptoms come and go and nerve damage which is permanent that is when symptoms stay. Both process can happen separately or together.

I started as most people with a diagnosis of RRMS and started on Copaxone. One hint it may be PPMS is it is much harder to diagnose as MS in the first place because it is subtle and Doctors are looking for attacks.  I had all the  the abnormal MRIs, and other tests. but the Neurologist just said I would be diagnosed with MS in the future. They were waiting for an attack which never happened. 85% of people start out with RRMS only 10-15% PPMS.

It is better to be diagnosed with RRMS and be able to go on the DMDs anyway.

I hope I did not confuse you more.

Alex

[Sumanadevii]

Each neuro is different.  My neuro won't even venture to give the type of MS until I have been under her care for a year or more.  I have been using a wheelchair for over six years for any distance and no things never seem to go away.  

Trust me that I won't be pushing my neuro for a type...I try not to bring it up...as once you get that label PPMS  you can forget getting any DMD.  I am not willing to take the outside chance that maybe...just maybe a DMD might help me.  There just haven't been enough studies to prove it to me.  

I guess eventually my neuro will make a decision or be forced to make one.  Until that time we are treating my MS with aggression and hope.