Hi Kadi. Welcome to the club nobody wants to join..:D I am a spry 72 yr old chick, who has had the signs of MS since 24, DX at 36, Long remission and DX again at 53..:eek:

Age is relative. If you are still RRMS, then I would suggest getting tested for the JCVirus, to see if you qualify and it's safer? for you to Try Tisabri. That would be pretty aggresive treatment.:eek:

If you are SPMS OR PPMS, forget the DMDs, as they are useless and just have your Doc/Neuro treat your symptoms.....and maybe take LDN(low dose naltrexone) for symptom management and, I believe, slow the progression of your MS.

That's all I take now, LDN and Prozac, to scare the doom and gloom away.:D

Good wishes for you in whatever treatment YOU choose or not choose. Do your internet homework and ask us here...we support you and your choice.

PS...Do not have the LP, unless the Doc suspects something other than MS. Just not necessary and invasive.

:hug::hug:

Hi Kadi sorry you had to join the club. I wouldn't wish this on my worst enemy. I hope you find something to get you through. I've tried rebif and now Gilenya. I like the Gilenya better but it is rather expensive. I hate needles. I think it was helping me but I'm not sure if i'll be on it much longer. I may try the LDN or nothing. I am not spry like Sally. I'm not even 40 and they say I have rrms. I'm crossing my fingers that remission is very near.

Stick around and you'll get some information and entertainment.:D

Spinal Tap
 

I dont want to have the spinal tap but he says he want to see if it is my spine. I have to go today for a JC Virus test.

Didn't he take an MRI of the spine too? Sounds like he wants to use all his tools..:rolleyes:

So he is thinking about Tysabri? I hope you test negative for the JC and that TY works for you. We have a TY thread for you to check into, with people who have been on Ty for a long time.

:hug:

JC
 

What does it mean if I test positive for JC. I have a cold not sure if they will do the spinal today. Cant seem to get rid of the cold. Was on one antibotic and it just seems to keep comming back. This nero wants to get very aggressive now he says, I guess because all the new lesions. Thank you for taking the time to write.

Hi Kathy......It's very nice to meet you, but sorry it has to be here.:( Just want to add my support to all the rest. Did you have the spinal? I never did have one, just MRI's, and was diagnosed at 47 but am sure it was around long before that. Now at 68, I've used a powerchair for six years and deal with a lot of chronic pain. Like Sally, I take LDN and feel it slowed progression quite a bit.

All the best to you in your journey with this miserable disease. Hope to get to know you better!:hug:

Spinal Tap
 

Thank you for your replys, well I had the test and it was not as bad as the first spinal I had. I now know it is all in the person who performs the test.Now I wait for answers to see what kind of meds the doc puts me on.

spinal tap done
 

yes had it done and was not bad. You said you have been in a powerchair, did you have alot of spacity in your legs and that is why you use the chair. I myself have alot of spacity in both leggs, left leg worst. At night when laying down is when I get the pain in what seems like the bones in my left leg. Now I have started to notice pain in my muscles in my right arm for know reason, I just seem to wake up with it or it wakes me up in the night. Is that part of MS.

What does spms and ppms mean and how do I fined out that enformation? Kathy

Hi Kathy,

There are different "types" of MS and they are, at this point, classified as:

Relapsing/Remitting Multiple Sclerosis (RRMS), Secondary Progressive Multiple Sclerosis (SPMS), Primary Progressive Multiple Sclerosis (PPMS), and Progressive Relapsing Multiple Sclerosis (PRMS).

This link will explain the difference the "type" differences:
http://www.nationalmssociety.org/abo...sis/index.aspx

Neurologist, many times, will keep a patient listed as RRMS simply due to the treatments and insurance companies. The insurance companies become less willing to cover the Disease Modifying Drugs (DMDs) for anything other than RRMS. Sometimes they will cover them for SPMS but not for PPMS or PRMS.

I was diagnosed at the age of 24, symptoms since childhood and I am currently 50 :)