Hi everyone, I’ve not been on here for a long time and I am sorry about that.
Anyway, I would like to ask a question, I have had to get copies of my medical records relating to MS.
Obviously, I had to have a look. On going through them it seems that I have semi Primary Progressive MS.
I am discovering a few new things that I didn’t know I have.
Sorry, I am digressing, but if anyone could help me out I would be really grateful.
Thanks so much. Jen xx
Hi Jen I’m sorry, I’ve never heard of semi primary progressive, it might be best to speak to your neurologist or GP, whoever made this diagnosis. Cath
There is only Primary Progressive MS as I understand it.
Who told you Semi Primary Progressive?
Isn’t there progressive relapsing MS?
Scudger, what a fab fact filled response. Terrific response Jen’s question. I too believe Scudger is accurate and I’ve never heard of semi-progressive. It’s a bit daft for anyone to jump to the wrong conclusion & unintentionally fob you off, creating more worry. Jen, I’m no expert but had a no title dx of M.S. in 2011. I didn’t know what MS is. Nor did I know there are different types. It took 10 years for a Neuro to confirm I have M.S.Then 4 years or so later the Neuro confirmed I have PPMS. A whole different story as there isn’t any remission or days off and no cure! Scudger has explained the differences between the various types. PPMS is most frustrating as it’s just continued deterioration with no remissions. Worst of all there was nothing to stop or even slow progression in 2011. The research continues. It just happens that NHS England have at last agreed to pay up to £20,000 per year for anyone with Confirmed PPMS less than 15 years old, can still walk a certain distance with or without aids. Plus other criteria. If PPMS is over 15 years ago, it’s possible there’s too much damage done which can never be corrected. So the new drug won’t work and research continues to find a cure for MS. People with RRMS can have several types of treatment to slow down the relapses and lengthen remissions but will still have relapses that are so exhausting, they could be bed ridden for a few days or over a few months. Having their treatments called DMD’s is to reduce relapses and lengthen remissions. It’s no cure but there’s something to give a better quality of life. Unfortunately, for PPMS there was nothing to slow the progression down. It doesn’t work part time. PPMS is a 24/7 challenge for us. No let up from the continual damage, we can have stuff to help pain, bowel and/or bladder to function. Some of us still drive and walk but know we could go to bed for hours the next day. I’m just trying to explain what I’ve learned about PPMS and why there’s no such thing as partial PPMS. My advice is to recommend you speak to your own Neuro Consultant or MS nurse to explain what has been written and why? Good luck Jo, hope everything works out. Take plenty of rest, manage time for jobs, drink lots of water or non fizzy juices. Chrissie xx