[biddi4]

Hi all,

Diagnosed a year ago and I'm still struggling with the feeling that maybe it's something else.

I have seen all my results, spinal tap: positive for O-bands, mri: lesions from c4-c6, etc but my progression has seemed very slow (thankfully), which makes me wonder.

So I'd love to hear from others who were walking pretty normally when symptoms began, to a point when it was CLEAR that things had changed.

I'm curious as to how it changed. Did the tingling change to numbness and then to weakness? Or were those symptoms seperate? What did it feel like physically?

It's funny, about two months ago I started getting a little more active on line. Really just two forums, but since then I have actually felt quite a change in my legs. Arms as well.

I'll leave it there for now. But ya, holler back.

[summerjc07]

Form what I understand it is the process of elimination. If they didn't see anything else like lupus etc... you still have demyelination and that is treated with the same meds if you were MS or not. (not a dr though)
Some people only have one or two relapses their whole life. Maybe you are one of the lucky ones.


I am not yet diagnosed but I have several lesions in my brain and will be going to the ms center of atlanta soon for the LP and other tests. Other than double vision/head aches, I dont have any other clear symptoms yet. That I can't say are thyroid related or that I have to run to the bathroom when I sneeze because I had a 10.7 lb kid lol.

However, I will say trust your gut and ask questions at your next appt or make one so you can talk to them.

Originally Posted by biddi4

Hi all,

Diagnosed a year ago and I'm still struggling with the feeling that maybe it's something else.

I have seen all my results, spinal tap: positive for O-bands, mri: lesions from c4-c6, etc but my progression has seemed very slow (thankfully), which makes me wonder.

So I'd love to hear from others who were walking pretty normally when symptoms began, to a point when it was CLEAR that things had changed.

I'm curious as to how it changed. Did the tingling change to numbness and then to weakness? Or were those symptoms seperate? What did it feel like physically?

It's funny, about two months ago I started getting a little more active on line. Really just two forums, but since then I have actually felt quite a change in my legs. Arms as well.

I'll leave it there for now. But ya, holler back.

[biddi4]

Originally Posted by summerjc07

Form what I understand it is the process of elimination. If they didn't see anything else like lupus etc... you still have demyelination and that is treated with the same meds if you were MS or not. (not a dr though)
Some people only have one or two relapses their whole life. Maybe you are one of the lucky ones.


I am not yet diagnosed but I have several lesions in my brain and will be going to the ms center of atlanta soon for the LP and other tests. Other than double vision/head aches, I dont have any other clear symptoms yet. That I can't say are thyroid related or that I have to run to the bathroom when I sneeze because I had a 10.7 lb kid lol.

However, I will say trust your gut and ask questions at your next appt or make one so you can talk to them.

Thanks,

Guess I should make what I'm saying more clear:

Suddenly in March of '11 my entire right side seemed numb-ish, and tingly. My bp was very high, so off to the ER. All tests negative. No obvious stroke, etc. Did a few weeks of physical therapy just in case it was a tiny stroke.

I felt a little stronger, but the tingly/numb feeling stayed. So I tried to resume my life. All though I quit my job as a truck driver because my foot never felt right again.

Along with the numbness, I had incredible fatigue. HAD to nap about every six hours for a few weeks, then that seemed to improve slightly. So a year went by with every activity I did being limited by this fatigue and I noticed my right side actually feeling weaker. So I went to a neurologist and got a work up.

My exam was ok except for some pretty bad balance issues, hyperreflexia, and ankle clonus (sustained).

So All the usual blood tests were taken Lupus, Lyme, AIDS, etc. All neg. Then the spinal tap, which showed multiple oligoclonal bands. So, likely MS because the brain and spinal mri's were still negative. This was fall of '12. So that doc suggested copaxone. I simply could NOT give myself the shot, so I stopped it. Plus this doc said secondary progressive, which it's not really intended for anyway.

So, I still continued on assuming it was MS, but kind of wondering why I wasn't having any remittance, or worsening (to speak of). But through 2013, it was feeling more obvious that something was changing because my left foot was starting to feel like my right, and the right side continued to get weaker, so I went to an MS center in Ohio, and there they got a better MRI which did show lesions in my neck area, so with that and my presentation he went with ppms. (Currently both feet have numb patches, I am weak all over. Arms, legs, torso, etc. My head always feels like I have a hangover. Just fuzzy, thick. Like the beginning of a flu. Been like that since the start.)

So now, a year later, I am worse but not like some. I can walk, just if I do walk any distance, like through a grocery store or something my legs get super weak and wobbly. So I'm very limited in what I can do. I couldn't even go for a 3/4 mile walk without suffering for 3-4 days. But I begin to wonder if maybe I'm taking too much baclofen, or I actually am getting weaker. Also, in the past 2-3 weeks, my right arm feels like there is a sleeve over it, and it's getting weaker. I almost dropped a pot of hot noodles draining water out.

That's why I want to talk to other ppms'ers in depth about the worsening and what it actually feels like.

[Alierenee]

Hi everyone! My name is Alison and I was diagnosed in 2007…I was a member here for awhile and then left my username was ashaffer99 if anyone rembers that far back! Anywho I’m back and hoping for some support as my MS progresses and is causing me to lose my job..

[Chemar]

Originally Posted by Alierenee

Hi everyone! My name is Alison and I was diagnosed in 2007…I was a member here for awhile and then left my username was ashaffer99 if anyone rembers that far back! Anywho I’m back and hoping for some support as my MS progresses and is causing me to lose my job..

Hi there and welcome back
I merged your old account into this new one so all your posts are now together

[Snoopy]

Hello biddi4 and welcome to MSWorld

this doc said secondary progressive

I'm not sure why you discount the diagnosis of SPMS and question having PPMS instead

The majority of those diagnosed with MS are usually Relapsing/Remitting overtime it is not unusual for a person with RRMS to transition to SPMS. It is possible for someone to go years in the RR stage without even knowing they have MS. By the time the person realizes something is wrong it's possible they have already transitioned to SP. Secondary Progressive is typically know for progression whether slow or fast.

Regardless of what "type" of MS someone may have we can all deal with some of the same difficulties with mobility, abnormal sensations and everything else MS is capable of.

Spinal cord lesions are well known for causing mobility problems. This happens in all types of MS.

I have had mobility problems from the beginning, at the age of 24. My biggest challenge with this disease has always been trying to maintain my mobility. That for me means, working with a Physical Therapist when needed and an on going exercise routine. This has been the case for 28 years

In any case, it can take sometimes years for a Neurologist to determine where a patient falls (RR, SP, PP).

I'm not sure I helped with your question or even made you feel any better but please keep asking questions

[Kitty]

Hi Biddi4,

Welcome to NT!

We have a specific thread for SPMS and PPMS'ers but usually it's very quiet. Most of the MS'ers here just post on the MS thread or The Stumble Inn. You're free to post wherever you choose but the majority of our MS members post on the MS forum. I''ve included the link to the sticky thread for the SPMS/PPMS thread.

http://neurotalk.psychcentral.com/thread108560.html

[biddi4]

Thanks, people.

Ok, it's been a year since a doc that I respect and trust says it's ppms.
Even though I said early in the post that I wasn't sure, I actually do believe him.

My only sticking point is, why is the progression so slow?
I'm stuck with being limited in what I can do. But since I can still get around, life demands that I keep going.......which completely kicks my butt!

So, I wonder how others that have ppms now, felt early in their disease when things got more difficult. I want to compare things with them to see how long before it gets worse for me.

I'm in limbo because, I can still function but functioning really takes a toll on me and I don't know whether to push through and risk getting weaker too fast, or rest as much as possible in order to preserve any strength I do have.

All of what I described is what makes me just a little unsure about what I have.

I realize that there isn't much that can help any of the demyelinating diseases, but I kind of was the most accurate picture of what to expect down the line.

With everything that I have read, I can't find very many people that describe their symptoms like I do.

I will hop over to the other ppms page and see whats up there as well.