Hi all, not been here for a while, there’s been quite a few new symptoms and worsening of existing ones. Apologies for long post xx
Like many, I’m affected daily by fatigue and neuro pain. Cognition, balance, vision, taste and senses. No wonder dvla stopped me driving. I have tremors, non restorative sleep, no concentration or attention span. I have no recollection of this morning yet recall my nursery, of schools, everything up to 2000 then hazy to total loss of events. Catheters help my bladder & Peristeen self irrigation helps my bowels. i walk when I can & use my scooter or wheelchair when I leave the house MS was confirmed in 2011 & PPMS in 2015. This was based on 3 earlier MRIs, a lumbar puncture, being older at 59 and no relapses. No new MRI was done to confirm PPMS which seems ridiculous and the current Neurologist said NO meds or treatment to help PPMS & his MS Nurse suggested counselling!
I take strong morphine based painkillers which my gp prescribed because Amitriptyline & Gapapentin had side effects.
My new GP has referred me to an MS unit at another hospital, yippee! So could anyone offer any suggestions or questions I can take to the appt in a few weeks?. On a good day I’m really good for a few hours. I haven’t ever been 24 hours free of symptoms for almost a year. My behaviour is strange & I can get over irritated at the slightest thing. I’m even rude with strangers and shout at people.
If any dmd’s or something can help to relieve these symptoms I’d be very grateful. Surely it can’t be only morphine to help with pain & the other distressing symtoms ignored. xx
I get a lot of those symptoms Chrissie. I haven’t seen my neurologist for over four years. That’s good news with another hospital. There are a lot of drugs out there but you need to try a few. Sounds dodgy, doesn’t it? I don’t actually take any. I’ve had MS for over 30 years but I sort of grit my teeth. As for the shouting and anger and memory and confusion; it takes some managing. I wish you well.
Ditto to what Steve said, I am just balancing my symptom’ s with life I keep smiling and deal with this one day at a time wish you luck for the new hospital.
Thanks Steve & Hoppity. I really wish I could balance it all, I certainly try but then Bam, I’m floored. I just don’t want to say “Yes, diag in 2011” & confirmed ppms in 2015! My first MRI in 2005 showed Frontal Temporal Lobes one side bigger (found out the other size is shrinking). From that I saw a neuro psychiatrist every 12months for 4 years. I insisted on seeing a Neurologist as the other guy just repeated the same questions for dementia patients! Then lots of thorough tests throughout 2011 & first diag.
I’ve been good ever since and coped well. The past 12 months have really deteriorated and I because of cognition & constant symptoms, I have to have something to help me cope again. As it is, everything is dire…I know all PPMS’s ppl have the same groundhog day, but wonder if you have any help, meds or treatment - I read books that say about support, oxygen chambers or other things (can’t remember).
Would like to approach the new place & consultant with the facts but forget most stuff I meant to ask. Now I’ll start a list but if anyone can make a suggestion, it would be great. Or is it really a case of hard luck, you’re stuck with it, it’ll never get easier, your future is doomed. Well…I added that last sentence for dramatic purpose x
This is not scientific but it works for me. Biorhythms.
On ‘critical’ days I don’t try and push on through; it’s pointless. I (metaphorically) pull the duvet over my head and don’t emerge til the following day.
Incidentally, this morning I chewed my wife’s head off for no reason. Guess what? When I looked it up, my chart indicated an Emotionally Critical day. I’ve printed out my biorhythms for the rest of the year.
Hi Chrissie, sorry to hear things have been so rough.
Unfortunately there are no treatments for PPMS…only pain meds, spasm meds etc, but nothing that will slow or stop PPMS progressing…although there is more research going on worldwide than ever before.
An MRI does not show if you have PPMS. They can diagnose MS from MRI and lumbar puncture (or sometimes from MRI alone) and then they keep an eye on it for a year or so to see if you have relapses and remissions. If not, then they diagnose PPMS.
Have you heard of LDN? Lots of MSers (RRMS and PPMS) use it and swear by it, and there’s lots of anecdotal evidence to support the claims that it helps a lot. I tried it and actually felt worse so stopped it, but MOST people who try it have a positive outcome.
You can’t usually get it from a GP but you can get it privately and at a very affordable price. You’ll find all the info here:
Unfortunately there is only meds for symptom control but none for ppms to stop deterioration in its tracks…perhaps one day there will be.
Bacloden can help with spasms, and Amitriptyline, Gabapentin or Pregablin can help with nerve pain symptoms, but all seem to have side effects to one degree, but everyone’s tolerance is different, so maybe worth a try.
It is difficult, that’s why this forum is so useful. Wishing you all the best, and good luck with your next appointment.
Thanks so much for these lovely, helpful comments. I’ve always known nothing can stop PPMS (yet) but symptom management is definitely where my current Neuro has been of no help or support. When I said his MS nurse suggested councelling, he said it’s too difficult to get an appointment! Then got private via MS society. She was lovely for family relationships but no medical info. I’ve coped quite well but over 12 months of hellish nerve pain + many other symptoms. Amitriptyline, Gabapentin & Prevalin each affected me badly but other meds in the posts I’ve not heard of. But L.D.N was one of my first posts a few years ago. Then it was only approved in USA. Thanks so much again, just knowing I can have meds to manage has uplifted my spirits. Many thanks again, please post if anyone has a med that they know of or take with PPMS.xxx
In the months and even years since diagnosis I’ve come to discover a lot. I managed to get a referral to another neuro, when I expressed an interest in clinical trials, to my neuro rehabilitation consultant. Miraculously, I fitted the toughest criteria of a trial but it didn’t work out. Following that, and based on the London MRI etc. I was able to get my local neuro to go for a DMD but I’m pretty sure they’ll take me off it in the summer. Living with this for so long gives me the impression it’s PRMS (progressive relapsing).
The steroids helped a lot but not necessarily in areas my very first neuro even considered - when I asked could my gastrointestinal issues be related, at that stage they still thought Crohns likely, he said no but Crohns would not be surprising. Two years on, gastro finally confirmed not Crohns but this was after a 2nd colonoscopy etc. where they couldn’t find problems they’d previously seen!
See if you can get a neuro-rehab doctor referral as they are very helpful.
I take a tablet called Duloxetine for nerve pain…I’ve tried Amytryptaline ,and it didn’t help at all, gabapentin and pregabalin which only took the edge off so I’m thrilled with Duloxetine, the maximum dose takes the pain away completely. I also take LDN, on a private prescription from Dixons of Glasgow and Biotin, LDN doesn’t help my pain but it’s put my bladder and bowels back on track and it’s also stopped awful skin problems that I had. Biotin helps my legs, I no longer get extreme restless legs or ice blocks where my feet should be. One of the two, or maybe the mixture of the two has helped my walking. I can’t walk many steps because I’m too weak but when I do they are so much less wobbly.
You can find out more about Biotin on Facebook …I don’t use it myself but I believe there’s a page called Biotin for progressive MS.
Sorry to hear you’re having such a hard time. I also need a lot of pain killers and morphine is one on my list. I’ve found that as I’ve gotten used to the meds I’m not as dopey. My mood is much lower and temper more fiery if I’m tired or in pain. I’m still trying to breathe and calm myself before biting people’s heads off with varying success.
My Neuro and nurse, GP etc are all very good and I see them regularly but they’ve explained that symptom control is the only treatment they can offer me. It took a while but I’ve accepted it and try to make the most of not being in that teeth grinding nerve pain. I don’t think I’ll ever be completely pain free but I have morphine syrup I can take when I need it and it’s very effective even though it scrambles my brain. Ensuring you get proper rest and enough sleep is probably the best thing you can do for yourself.
Many many thanks to each of you. Thanks to some of the posts I’ve accepted the only thing I can do is try to manage symptoms & obtain the right meds to do so. I have an appt on 4th Aug at a new hospital with a new neurologist & MS Nurse. I have a huge lists of questions suggested by the posts, & from your recommended research sites. I will NOT be fobbed off. It took from 2003 when I first went dizzy, 2005 to waste years seeing a dementia specialist, and eventually getting dx in Nov 2011, PPMS dx in 2015 - I know now I allowed myself to be fobbed off, never complained when a neuro asked for a contrast mri but it never happened & no-one chased it. I know all symptoms, where they’ll eventually lead and I’m sure I’ll cope with less pain & less fatigue. What choice is there apart from acceptance and get on with it? I really can’t thank you enough. I was so despondent at the start of these posts. Now Im looking forward to the new neuro etc. I’ll let you know how the appt goes. xx
It takes time to get your head around the huge amount of info available and to sort the wheat from the chaff! There’s plenty of knowlege, support and experience here tho
Good to hear that you have a list, I now have a post-it note in my pocket for virtually every appointment now. I also go thru any letters after appointments and note stuff I don’t recall or don’t understand so I can ask for clarification if needed.
I used to be in a great deal of pain, but I tried the more natural route of acupuncture, meditation, and a TENS machine, I can’t guarantee it will work for everybody, but drugs don’t work for everybody. I am now pain free practically.
xx