Anyone else had the disease for over 20 years? My husband was diagnosed with primary progressive in 1992 and 2 years later was in a wheelchair. Suprapubic catheter fitted 1994, PEG tube fitted 2012. We have had a difficult 12 months: his swallowing became so bad he had to have a feeding tube and is now Nil By Mouth but still produces lots of saliva which he can’t swallow properly so coughs and chokes and dribbles. He takes glycopyrronium but no-one seems to know the best dose because it is Off License (not licensed for this symptom). He takes more than the neurologist recommends but our local Hospice has been helpful because they use it in palliative care. Severe leg spasms are also a problem, his legs are permanently bent up which makes washing/dressing/toileting difficult. He is waiting for a Baclofen pump to be fitted (in the abdomen with a tube to the spinal cord) which administers low doses directly to the legs. Hope it works! His suprapubic catheter has blocked recently and now the District Nurses can’t get one in so he’s got a urethral catheter until we can see a Urologist to get the catheter track fixed. I presume the track has got adhesions after 19years. Our MS Nurse says that she has little experience of anyone with MS for such a long time so it seems as if we are breaking new ground! Not much consolation but we will carry on somehow . . .
Hi Wigwam, welcome to the board and Happy New Year. Sorry to hear your husband has been having a rough time of it. Hope the Baclofen pump gets fitted soon and is a success. We do actually have a couple of users on here who have had PPMS for longer… in fact one chap who’s had it for 40 years. But of course it is different for everyone and progresses at different rates. In fact our member who’s had it for over 40 years is still living independently and not doing badly. I wish it was the same for your husband. Well I wish you and your husband have a much better 2014. I’m sure you also need some support yourself. Have you tried posting on the carer board? Have you heard of the drug LDN? Look for older posts on here about it and check out the website of ‘The LDN Research Trust’. Given your husband’s severe symptoms it well might be worth trying. Take care, Pat xx
Hi and I hope you get the answers you need. As Pat said, everyone progresses at different rates. I nursed a man regularly before I got ill who’d had the illness for over 30 years and like your husband needed a lot of looking after. It is difficult but when you’ve got the right care in place most symptoms are manageable.
I hope the Baclofen pump arrives and is effective. I also wonder if there would be more help for you in the carers forum, but you are more than welcome here and if we can be of any help we will. I hope 2014 brings you much luck, health and happiness. Take care and please let us know how you get on.
Cath xx
I was diagnosed 20 years ago but not as rapid decline as your husband I am now in wheelchair and fought every obsticle as it came up. I hope you and yoir hubby get things sorted. you deserve one of these. XX Don
Hi
I have had ppms since early 80s and although I am a wheelchai user, my progression has been a slow gradual one.
I wish you and your husband all the very best, take care.
Pamx
Hello, dears!!!. I,m from Spain and , 43 years old, and diagnostic MS 1992, I always work so much, i,m nurse!!!. De dr. Simply said that i am Ms an no more.Since 10 years i was very bad and now i use a care board, o can stand up and walking a bit. She said me that no exist treatment for me!!!. I,m crying everyday because i want intents use some treatmen Now exit on Spain a new on from IK, and after one woman brought it in UK for 600 EUROS, i don, t know how mucon your country. I think that now you have another treatment since last month. The day 7 this month i must visit my neurologic doctor and want to talk about this thing that are very interesting for me!!! Perhaps i, ll bough some treatment on UK because my dr. Never, never want to give mi something to intent nothing whit my illness!!! Thanks and i,m very sorry for my inglish, i hope you understand me i, m very nervous!!!. Good night and kisses for oll. Thanks!!!. MARISOL<3
Hi Marisol
I don’t want to upset you but there is no cure for MS in the UK. We receive treatment for our symptoms like pain and muscle spasm for example. What you may be talking about is LDN. The link to the website about this is: http://www.ldnresearchtrust.org/ You could take that information to your neurologist.
There is medication given to people with Relapsing Remitting MS (RRMS), but none for Progressive MS. That medication does not cure but helps delay relapses. The Neurologists in the UK recommend we take Vitamin B and Vitamin D. The amount differs, my Neuro has done a lot of research and recommends 1000 units per day.
I can’t give you much information about the drugs given to people with RRMS as I don’t know enough but the MS Society provides this information in their main information section and you can find information from people who use it in the Everyday Living section of the forum.
I hope this helps you, someone else may have more suggestions but my Neurologist has told me there is no treatment for Progressive MS. Take care.
Cath xx
The doctors think I have had MS since I was a teenager, A short history: I am 55 now. A lot of my symptoms were blamed on a low thyroid and bad back problems. I tend to have relapses when I have viruses. I was told that Ijust didn’t do wellwith viruses. I missed many months of school after mono.and viral pnemonia. While I was working I had o go on short term disabily many times after viruses. I was 49 years old when I had a relapse of the virus epstein barr) that caused the mono I had at 15… During this episode I became very ill and that is when I finally went down the road to getting my diagnosis, Once I was told that I was having a relapse, I realized that I had been having them all along. The doc did a little forensic work with my medical records and thinks I could have been as young as 8, Unfortunately, the relapse that got me my diagnosis is the one that left me in the more disabled state I am in now. I had been on disavility for lmost 20 years due to pain that they had associated with back pain. I now have many more symptoms like lack of coordination (using a cane), severe exhausion, big sleep problems, and more pain among others. If I had an earlier diagnosis and had been on Copaxone earlier, I might not be in the state I am now.
The good news is that 2 neurologists have told me that at my age you pretty much stop getting new symptoms and the ones you have can get better,