MS
 

Hi my name is Kathy and I wanted to hear more about MS. Does anyone know what the mri report says extensive multifocal lesions scattered throughout the deep white matter of the cerebral hemispheres.

hi kathy and welcome to NT,

i can't answer your Q but i'm glad you found us.
i'm sure someone will come along and have more info than i do.

looking forward to hearing more about you.

Best to talk to your doctor about the report...

Welcome to NT...lots of info, support and laughter here...

Hi Kathy

None of us here are experts, but welcome and I am sure you will be able to get some great support here.

I can only assume from your post that you have had symptoms that have led to an MRI, but as yet don't have a firm diagnosis.

Others are right in saying that you need to talk to your doctor about the findings - there are lots of reasons why people have lesions on their brain, MS is only one.

Looking forward to getting to know you better

Regards

Lyn

MS
 

Thank you for some answers, I do have appt. on Dec. 5th with the nero, Have a great day Kathy

Dx ms
 

I was dx on Monday with MS. Friday the doctor still wants me to have a spinal tap. I have lots of brain lesions, he says he want to be real agressive now. It took some years to dx and now he says he needs to start meds soon. Wow 64 and I feel I have had this for some time. I only have certain systems as bad spascitiy and being real tired at times. Bad memory loss and some times balance. Muscle acks at times, hope it is not to late to treat me since I am in my 60. I would like some commants about the age factor. Kathy

Hi Kathy. So sorry about the dx but at least you have something to aggressively treat.

I was 45 when I was officially dx but feel that I've had MS for quite a while before that. Just didn't know what I had.

It's a guessing game to find what works best for you. Everyone reacts differently to the DMD's. There is lots of info here and lots of folks who have great experiences to share.

i was 53 when i was dx'd. i'm 62 now. i've been on copaxone since '03 and have done well and tolerated it well.

take one step at a time. it sounds like you have a good dr.
let us know what's happening. we're here to help.

I was dxd at 53 but feel as if I've had it years before. The docs attributed all the symptoms to my fibromyalgia.

I've been on Copaxone for 3 years now...doing okay.

I experience a lot of pain from spasticity too...and balance issues, cognitive dysfunction, bladder/bowel...all sorts of fun. I still manage to enjoy life though.

Why have a spinal tap when you have a firm diagnosis? It's one of the diagnostic tools. If you have the dx, why go through that?

Let us know if you are going ahead with the spinal...we have advice on how to deal with it afterwards.

Glad you found us!!

What Kitty said. I was 46 when diagnosed in 2002, suspect I had it since '94, what Kitty says, it's a guessing game. Making some lemonade from these lemons (the ones I haven't squirted in others eyes)eventually diagnosed PPMS but at least I was kinda old before things got really bad and my kids almost grown. At least it's me, not them. Hey, best lemonade I've got.

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 :)

Hello Kadi,

Welcome. I'm still looking for the best med for me. I hope your aggressive treatment help keep exacerbations away for a LONG time! This is a good site with caring people :)

lumber report
 

Hi I picked up my test results today, I guess the doctor will talk to me soon.. Protein level is high so I guess I wait.

Test result
 

he says i have ms and i see him tomorrow, tues, 20th to talk about treatment, he is looking at tysiebri i might have spelled that wrong, and he said come in and ask all the questions i need answered. Kathy

Kathy - Sorry to hear about your official diagnosis. :hug::hug: There is a thread on here for Tysbari. You can find information on there and it may help with questions to ask your dr. tomorrow.

http://neurotalk.psychcentral.com/thread142931.html

Also, make a list of questions you want to ask. It makes it much easier on both you and the dr.

Let us know how your visit goes.:hug:

:circlelove:((((((Kadi)))))):circlelove: Sorry, but glad you are here with us.:)

I am afraid of Tysabri for myself and all of you, but I support your decision for treatment, whatever it my be. Just make sure that your Doc takes all the precautions and completely informs you of all and any dangers..:cool:

Sorry you're officially a member of our club...let us know what the doc said...:grouphug: