[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.

[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.

[gruvingal]

I have seen my regular doctor and a neurologist, both who seem to think I don't have MS because nothing showed up on the brain MRI. I have several symptoms including feeling of a tight corset, blurred vision, numb spots and strips, itching, tingling, problems with walking when tired, tremors, fatigue. The blurred vision just started recently and is really scary! The neurologist said I have a tremor but wants to send me to U of WA for more testing. I am tired of being poked and prodded and living on $197 a month the state gives me. I finally hired an attorney. None of these doctors want to take the responsibility of telling Social Security I can't work anymore. I am waiting for a hearing and it could be at least 15 mos. Why will they not listen to me? I have asked them to advocate for me several times. Now they are passing me off to the university and God knows how long that can take! I just want some answers.

[Snoopy]

Hello gruvingal,

There is a diagnostic criteria for diagnosing MS, The McDonald Criteria:
http://www.nationalmssociety.org/For...osing-Criteria

There is no single test, by it's self, which can rule in/out MS. However, the McDonald Criteria relies heavily on the MRI.

Why will they not listen to me?

Your Drs. are listening that's why they have given you a referral to the U of WA for more testing. Many conditions/disease as well as vitamin deficiencies and some medications can cause symptoms similar to MS.

If you are taking any medications you may want to do some research into the side effects. If upon doing research into your medications, if you take any, and find some or all of your symptoms could also be side effects of any medication(s) you are on then please discuss your symptoms with the prescribing Dr.

Medline is a good resource for researching medications and their side effects:
http://www.nlm.nih.gov/medlineplus/

[ChristiS]

Hi, I’m Christi, 41, and do not yet have a diagnosis yet, but have some neurological symptoms that come and go. I have one lesion on my brain, have had a clear LP and clear VEP almost 2 years ago. I have just had a 3rd brain MRI with no new lesions. Hope to get to know y'all soon!

[SallyC]

Hi Christi and welcome to the club. I hope if you turn out to have MS,
you have a mild and, a slooooow to advance, case.

[ChristiS]

Thanks, Sally! I'm ready for any kind of answer!

[jenng]

Hi everyone. I usually post in the peripheral neuropathy forum. My symptoms are progressing--more numbness, tingling, muscle soreness & cramps. Legs that feel like jelly. Tight feeling in abdomen that comes and goes. Brain fog that is new for me. My last head MRI was 2 1/2 yrs ago, and entire spine within last 4 yrs. Crystal clear, all of them. I've never had an LP, but my neuro is finally doing it. He says my progressing symptoms are very suspicious for MS. It's been over 12 yrs of symptoms for me, and I just don't know how to feel about it. Thanks for listening