Who is SPMS??

[mjan]

HI folks,

Just wondering HOW and WHAT circumstances lead you to be diagnosed SPMS ???

I had a bad exacerbation earlier this year, ending in hosp end of March with IVSM and diagnosis of seizures.

I had PT in April..got my balance back..and now could walk without walker; dizziness gone.

BUT my vision remains incredibly blurry for 2 years now, with recent exam and new glasses. (3rd pair in 5 years)

What has not improved is my coodination, cognitive/memory issues and steadiness. I use a cane now but can get around the house without it.
I use a scooter to shop as my legs won't hold me up that long.

Met my new MS doc, who was my 2nd opin clinching my diagnosis after 20 plus years of symptoms and relapses.
I also have a rare kidney disease, autonomic disorder and sicca syndrome, and now MS seizures along with the MS. I just think all this has been there..just working a difficult job contributed to my exacerbation.

Asked my MS doc if I am RRMS? And she thought yes..then looked at my cane..and just said hmmm...

Ok.. I am not sure.. and its not pressing to me to know.
So..how DO THEY determine you have moved on to SPMS???

Thanks...sending you ALL loving healing vibes...HUGS

Jan

[kellygrn]

I think the types are for insurance companies

My doc said when I started having issues that never got better, then I had SPMS. I have "episodes" but rarely get anything back.

Of course, most insurance companies won't cover drugs for SPMS & none for PP or PRMS.

KK

[Sequoia]

I don't think the types are for insurance companies as KK said, but insurance companies do use them to determine whether they'll pay for a given DMD.

I was already SPMS when I was diagnosed in '04, but my Neurologist said I'd probably had MS for almost 30 years before that, based on my history. I'd had various problems over the years, some of which I just weathered until they got better, and some of which were misdiagnosed.

I agree that SPMS begins when you stop getting better after exacerbations (relapses). At that point, your MS is no longer in the inflammatory stage and is just progressive.

It's also possible to be classified "SPMS with Relapses," which means there's still some relapsing/remitting going on but overall your progression is permanent. Some Neurologists use that classification in order to be able to still prescribe a DMD. I know of several people who are definitely SPMS and taking Copaxone or (less often) Betaseron, but I don't remember (if I ever knew) what their official classification is. Neurologists (and doctors in general) do fudge diagnoses to get around the insurance companies.

[0485c10]

The UK NMS has an interesting page on SP

I have seen others post websites. I'll giove this one a try plus Jan you put your email in your Profile, if posting the site doesn't work I will go with your email.

This site has a link to diagnosing SP-which is difficult. Th4e stages of
'AsymptomaticMS'->"RR(benign is a type of RR)MS' ->'Worsening RR' ->'SP with Relapses still present'
->'Sp with Relapses no longer present'.

At my first visit with my new neuro, I brought a chart that had these stages in it. And Asked my doc where I was in it.

She said that I was at least Worsening RR but after that the stages all blend together. I rhink because there are no treatment for 'SP' its better to stay in documentation within a relapsing stage.

The UK page about SP:
http://www.mssociety.org.uk/about_ms...t_is_spms.html

I'll use your email address to send you a link to that chart.

[Domino]

When diagnosing SPMS, a lot doctors will watch your progression over six months for signs of continual decline and worsening of symptoms before they diagnose you.

They do this because MS can cause a decrease in fitness due to pain or disability from a previous relapse. They have to take that into consideration along with any other health issues you might have and ensure the distinction between experiencing symptoms from those issues and the actual MS progression.



I am 40 years old and I was diagnosed with Secondary Progressive Multiple Sclerosis a few years ago. I never fully recover from my relapses and my MS has been very aggressive. I was often in the hospital and in-patient rehab on average every four-six months with new disabilities. This has been ongoing for a few years. I use a Corpus C300 wheelchair to help me get around now.


I have had an awful time with relapses that hospitalized me.

- Having a relapse that caused complete loss of muscle coordination throughout my entire body that I could no longer walk or use my arms or turn/hold up my head. This put me in a wheelchair as the coordination issue is permanent.

- Having my entire left side go numb and my leg and arm no longer functioning. Took a month of physical and occupational rehab to get my arm and hand function back. Leg and torso is permanently numb.

- Having a relapse where I was in a severe ataxic state 24/7 that I was flopping around like a fish out of water for several weeks. I continued to have residual involuntary muscle tremoring severe enough that I couldnt bathe and do simple things by myself for 8 months afterwards.

- Having a relapse that caused full body muscle spams that caused my arms, legs, feet, hands, and neck to contort into disfiguring positions. This was excrutiatingly painful, like having a 'charlie horse' through every muscle of my body, which didnt subside until four months later.


These were in addition to the regular relapses that would happen or symptoms that would happen in between relapses which caused difficulty swallowing, difficulty speaking, cognitive issues, optic neuritis, nerve pain, burning or frost bite sensations, numbness coming and going in various parts of my body, tremoring, etc.


It has been an annoying and frustrating ride.

[Des]

Come and see us on the Primary / Secondary Progressive message board, Jan. You can ask the same things there, and get answers from people who have been dxd SPMS.

[MSGina]

I'm SPMS =)

Hi Mjan

I'm Gina.Had MS since 1988 (at least) and been dxed SPMS since 2004.

Nice to meet you =)

[Defya]

Me, too

Hi Dear: Yep, me too. I was diagnosed in 2009 with RRMS, after more than 15 years of sxs. I switched neuros and am now being treated at a fabulous MS clinic. I was diagnosed with SPMS just last week. It felt as disorienting as my original diagnosis, but ironically, like the initial diagnosis, really just confirmed what I already knew.

The doc based her diagnosis on clinical information, such as symptom progression and the results of her neurological exam. My MRIs are not as bad as some, but the doc reminded me that there can be damage that does not appear on the MRI.

Her recommendations included general physical therapy, vestibular physical therapy (for endless dizziness), the use of a device such as the Bioness and a switch from Betaseron to Copaxone.

You know I send you lots of love and hugs. All of us here are here for each other.

[Frederick1]

I have SPMS. I started with RRMS, where I had the usual relapses and remittance, but after several years, I stopped having relapses, but continued to worsen. I'd estimate I haven't had a relapse in nearly 10 years, but 10 years ago I was still walking, and am now a full time wheelchair user. My legs just slowly got weaker over that 10 years. There wasn't a specific date that I was officially determined to have SPMS, it just sort of becomes obvious at some point.

[beckyd]

My history is similar to Frederick's. I started all this in 1997 & for the next 4 years I had definite exacerbations several times a year. IV steroids were my friend - everytime I had them, my symptoms would go away for awhile. Unfortunately, they or new ones would return a few months later. As time went by, the steroids didn't completely erase my symptoms, and I just continued to progress.

I took my last steroids in 2001 (I was at the hospital on 9-11 so it's hard to forget). Since then my symptoms have continued and gotten worse with new ones popping up. I tried Methotrexate, Novantrone and steroids once a month for awhile. I assumed I had been promoted to secondary without the doc saying anything. At some point she confirmed my diagnosis. I'm now trying Ampyra, but no positiives yet .