Hello, thanks for dropping by. I know that there are people out there the will be able to help you. I have SPMS, and my neuro just told me about some options. They are a little scary.
If I may ask, what drugs are you on now, so help you with your symptons. I too, can only be treated symptomatic .... so, like you,
there isn't alot they can do. My MS has progressed quite a bit this last year, but, there is hope, ALWAYS there is hope.
Remember that when you have your down days, and can't sleep, and get pain... I know, and totally understand what your are saying. I just 3 days ago, stopped my Copaxone that I was on, as my neuro said, it was only hurting me, not helping.
So, are you on any this for Disease Modifaction Drugs ???
or DMD's are it is called here?
Hope for you, and keep coming by, there is alot of knowledgeable people here, and lots of people that have become my friends.
Hi and welcome to our little MS community!
We have a few community members dx with PPMS but it being one of the least common types of MS, there isn't that many and i hope they see your post and give you some of their ideas and experiences too.
There isn't much available for SPMS or PPMS at the moment, apart from treating the sx's but the researches are working on it, so that will change some day, probably not soon enough but i'm sure one day they will find it.
Pointing you....... I would need a 'second opinion' from the best MS specialist I could find, before I would be comfortable in accepting its PPMS.
PPMS is more difficult to dx than RRMS and thats hard enough, it usually takes a few years to be absolutely sure of an MSers sx behaviour pattern is PPMS. Relapses can be short or last for years, so to be dx with PPMS there can be no impovements detected over a very long period.
To be PPMS, there can't be any prior history of improvements, nothing at all to indicate a remittence pattern is or could be still happening and if your sx's did use to remitt but now they dont, then that indicates a progression from RRMS to SPMS.
So for my way of thinking, the first thing i'd be doing is getting a second or even a third opinion on if it is PPMS or not and knowing me, i'd be asking a lot of why and what if questions before i'd do anything else. I'd also be reading everything I could find, research, MS organisations etc looking for anything I could try to see if it helps my today's and tomorrows.
Welcome to the community. I have a diagnosis of RRMS, but I really think it is PPMS. I have so much spasticity and tightness in my legs, I'm already on the max amount of Baclofen that you can take. I was just diagnosed 2 1/2 yrs ago. And I really understand the fatigue. My testing showed moderate to severe motor functioning in my hands. I never have relapses - just a slow progression downward.
I'm taking Copaxone, but I think it's useless. And I know that there are no disease modifying drugs for PPMS. Basically, there's such a small amount of people who have it, I think they don't want to invest in finding cures or things like that for it.
It is very frustrating. What kind of meds are you taking for your symptoms.
The NMSS has a book on PPMS or they use to. They sent it to me. I have PPMS but it is really slow in progression. To me it is a subtle form of MS. Changes occur for me overtime and I hardly notice the progression. Now that I am in my 50's I should see more changes because that is when it shows up for most people.
Hi, Thanks for the welcomes and the comments. I am looking into the second opinion. I am on no DMD. Just ones to treat my symptoms. Vesicare for my bladdar, baclofen for the cramping, alieve almost daIly and tramaDol for severe pain. I tried diet changes and eliminating caffine to improve fatigue but it is not working. I see my PCP next week going to see if he can give me something.
The reasons my neuro gave for the PPMS diagnosis was the signifficant progression of my symptoms over the past 3 years. Most of my lesions are on my spine and my symptons are consistant and age of onset. I was 38 when I started having symptoms.
I got a second opinion as well. It can't hurt.
I'm another of the PPMS people here. I've had MS for over 20 years but only got my DX in 2010.
My MS Neuro has had me on CellCept for a couple of years to try and help reduce the progression of my MS. This is a Immunosuppressant that is normally given to transplant patients. So far it seems to be slowing the progression to some extent, though lately I think it may have stopped and I will need try try something else or have the dosage increased. I will be seeing my MS Neuro next month to find out what next.
I also read something on-line (I think NMSS) about doctors trying out a blood pressure medication that seems to be helping people with PPMS. When I first read about this I got kind of excited because it was spelled similar to the BP medication I take, but alas it was a different med.
I agree with supermum_ms about the second opinion with an MS specialist if at all possible.
My diagnosis is RRMS and your symptoms as described sound very similar to mine with the exception of the bladder issues.
My diagnosis has not yet changed. However I was only diagnosed in February, 2011.
I have been prescribed a DMD (Avonex), I just choose not to take it right now. (for a variety of reasons that I won't get into right now.)
Fatigue and Spaticity (and the other problems caused by spaticity) where my biggest issues. I am not able to take Baclofen. I have been able to keep my symptoms manageable for the time being with Neurontin, Flexeril. I am sleeping better now, and I am taking Provigil to help with the fatigue. It's not perfect but it does help. It's better than nothing.
I also take Aleve either prescription strength or double OTC.
I just read an article about someone with a progressive from of MS who had started a new medication with positive results. The only problem is that I get so much MS literature in the mail and in my email that I can never remember where I read it to refer back to it.
I think the other difference is all of my legions (at least at my last MRI) were on my brain not my spine.
Hopefully with the second opinion you will be given some more treatment options that will make things look a little more hopeful.