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Old 05-27-2008, 01:21 PM #1
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Default Primary Progressive?

I am currently under a doctor's watch for potential primary progressive MS. Does anyone here have Primary Progressive? I know that it is rare. However, my right arm went numb about 9 years ago. The doctors thought it was a disc in my c-spine. I had surgery, and no relief from the numbing, tingling, etc. My right leg began the same path about 2 years ago, just before the surgery. I have had an MRI, but because I currently have braces, the test was worthless. A MRI from just before my surgery, and braces, revealed what appears to be a lesion. So, I had all the tests including a spinal. Everything came back normal. They wanted to wait until my braces come off in November and repeat the MRIs. Looks like MS but I have heard primary progressive moves more rapidly than how I am progressing. The neuro can't find anything wrong with me. I don't take any medications, for anything.

Help?
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Old 05-27-2008, 02:37 PM #2
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Primary Progressive, from what my neurologist has explained to me is a pattern of progression, more than a speed of progression. In primary progressive, usually the symptoms gradually increase, with no, or few flair ups.

My course is similar, but slightly different. I have a form of progressive known as PRMS, which is similar to PPMS, with flair ups that I usually never completely recover from. When I first was told this, the speed of the progression was very frightening to me as well, as I didn't know what the future held. With mine, I have noticed that sometimes I will progress quickly for a period of time, then the progression will slow down for awhile.

I think the speed is different for everyone, and usually progression for males is faster than for females. That is just what I've gathered from chatting online to others with ms.
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Old 05-27-2008, 03:07 PM #3
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I am still trying to figure that all out. When I asked a Neuro. he said I was RR but then I pointed out that I had a new symptom, spasticity at school of my right side. He explained it as maybe old scars causing problems instead of it being a new symptom - sure seemed new to me!

I have had numbness/hypersensitivity on my left side for months but I think it's getting a little better so I guess I have RR but I really don't have a clue, maybe the next time I see my Neuro. I'll ask him! Can a neuro. tell you by an MRI what you have..or is it based off symptoms?

Monique
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Old 05-27-2008, 09:19 PM #4
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Howdy, Texans88! (sorry, just really wanted to say that..).
I have PPMS, and speed rarely has anything to do with it in my case. For the most part, it's been a very slow decline. I still walk, still drive, still work, still drive my kids crazy..The usual. Don't panic if that's what they dx!
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Old 05-28-2008, 01:17 AM #5
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The diagnosis of PPMS has nothing to do with the speed of disability onset. It only describes the course of the disease, which is only progressive, without any relapses or remissions. This is different than SPMS, as SPMS by definition is preceded by a patient going through an RRMS stage. PPMS and SPMS look very similar, but PPMS patients are progressive from the outset, and SPMS patients go through an extended period of relapses and remissions before the disease becomes strictly progressive.

As far as the speed of that progression goes, it varies widely from patient to patient. Some patients diagnosed with PPMS have very slow progression, and can remain quite active for many, many years. Others are hit extremely hard by the disease, and may be bedridden within a year or two. Most fall somewhere in the middle.

The most unfortunate aspect of the diagnosis of PPMS is the lack of effective treatments. Many treatments have been tried, and their efficacy varies from patient to patient, but none have been found to be very effective.

Hopefully, with continued research into neuroregeneration and neuroprotection, we will see therapies developed that can be applied to progressive patients sometime in the foreseeable future. Stem cells offer great hope, and several trials using stem cells for neuro repair are currently underway.
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Old 05-28-2008, 05:20 AM #6
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I have Primary Progressive MS. I have never had an exacerbation. My syptoms never go away, they just worsen over time.
My symptoms seem to worsen all at once and then for a long period of time I have no worsening at all.

I have been on what my neurologist calls a "plateau" for almost two years. My symptoms seem to have remained at the same intensity for that period of time. I keep my fingers crossed that I remain on this plateau for a good long while.

With PPMS the doctors only treat the symptoms. I take Flexeril and Neurontin and sublingual B12.

Apparently, to add to my MS, I have a B12 deficiency. That causes its own set of problems including a peripheral neuropathy.
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Peripheral neuropathy - B12 deficiency
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Old 05-28-2008, 09:02 AM #7
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I am PPMS - good news was I was DXed at 46. Bad news, well.....

In 94 stared feeling unbalanced, started to have pee issues. After walking 2 miles got tired, had to sit. 2000 - packed up my house, moved, unpacked., kept remarking MD (new home) really crooked. 2002, DXed after complaining about p issue. 2002 Canadian crutcheds to walker to now, 2208, can stand (for very short periods) use power chair. Progression differs in everyone.
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Old 05-28-2008, 09:09 AM #8
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[QUOTE=kicker;288549] 2006 Canadian crutches
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Old 05-28-2008, 09:59 AM #9
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Default Thank you.

Thank you all for your answers. I am still very active as my girls are 11 and 16. I had a hard time this weekend as we did a lot of walking. Other than that, I don't have a whole lot of "pain" just a lot of discomfort. The neuro thinks I am fairly slow in progressing, which is great. I am thinking of trying some Yoga as I have heard this can help build muscle strength without making me exhausted. I only take Aleve on really bad days and hope I can continue for several more years without a lot of meds. B12 was in normal range.

Has anyone been to Shepherd Hospital in Atlanta and/or Dr. Thacker? I hear he sees alot of PPMS patients. I am thinking of heading down to see him later this year.
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Old 05-28-2008, 07:51 PM #10
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Cool Ppms

Hello there...

I also have PPMS, recently diagnosed (Mar 08) but w/ long standing symptoms/issues (first neuro visit Jan 06). I have balance problems, dizziness, bladder problems etc but the thing that brought me to the neuro doctor first were problems with my left arm (tingling, burning, buzzing...weird stuff) then - cognitive issues just kind of all ganged up on me! Cognitive issues...including getting lost, sounding drunk, never having the right words to complete really compelling thoughts etc.

The MS specialist (who I expected would blow me off or say it was nothing but that I should increase my anti depressants and carry on) --- said --- I believe that you not only have MS, but that you have PPMS....and that you have marked brain atrophy which has increased quite alot in just a year. I was/am flabbergasted - I expected to be sent packing. It still seems unreal in many ways.

Anyway, I don't want this to get too long - I just want to offer you hope. I am active duty Air Force, still mobile, still able to exercise (but not run). My PPMS has not drastically affected my mobility - but every day I do the roll call to see if everything is still working as it should. I have cognitive issues but most of the time they are pretty darn funny....

I hope that you find peace with all these kind folks, they sure make our journey less lonely. Our experiences strengthen each other - we know that we are not alone.
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