Hi all
has anyone found anything that slows progression in ppms or had it plateau?
whther that’s ldn or diet or dmds? I’m willing to try anything
thanks
kris
Kris , I really think that you are jumping the gun. With a clear MRI you should relax. All this stress and anxiety is no doubt fueling the strange symptoms you must be having.
I am in limbo too and I suspect PPM too. I have been under investigation since 2011 and still no real concrete diagnosis. I have and still do spend a fortune on supplements which I believe have helped all but the dropped foot.
I do have a cervical cord lesion but as I have a clear lumber puncture and not enough lesions I dont get the diagnosis.
To answer your question some people swear by LDN. I want it too. Neuros wont prescribe it and there is a site were you can get a private doctor to give it to you but you need a dx of MS. Believe me I have tried to get it without success!
I am praying that the Biotin trial is positive or this big new on the Barts Blog will help us.
Moyna xxx
Hi moyna
I get what your saying but I have now gone from no issues to problems walking and arm issues within 4 months I cannot sit here and let this happen to me ive got a family and business to take care of. Sadly for some people progression is faster than othera
Hello KrisP
I feel for you its not easy being patient … I’m like moyna still waiting for a definate answer and the sadness and frustration is overwhelming at times. Iv’e gone from being a busy Mum always on the go to now being a wheelchair user and still waiting for answers my life has completely changed… its so hard to get your head around it I think getting a diagnosis won’t always change things but would give us emotional closure.
Michelle x
Yes I agree completel but all this has happened for me in 4 months it’s so fast how it’s gone so far and it’s not goos
i am having bladder issues now too which for a proud 30yr old man is impossible to deal with, I don’t know how long I can take it, I’ll try everything I can to stop it but as it looks to be PPMS there may be nothing to be done
Hi Kris, I can understand why you want to try and slow it down… if it is MS.
LDN can be a great help for bladder and bowel issues. It doesn’t slow MS down (well not much research has been done on it and so it might) but it really helps with some symptoms. I don’t use it although I did try it and it made me feel worse.
Go to the LDN Trust website. That will explain how to get it. You go through a private doctor and a chemist in Glasgow sends it in post. It’s all very affordable.
Also you should go on high dose Vit D3. This is not available on the NHS. Go to Amazon. Healthy Options sell a huge bottle of capsules of Vit D3. 5,000 iu. (That’s international units). My neuro recommended it & lots of us on here take it.
But for time being, IF you do have PPMS, there’s nothing that will definitely slow it or stop it. Believe me, if there was, we’d all be taking it.
Sorry to say that. I know it’s hard to take.
Pat xx
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Thanks agin all
im looking into HSCT for it because it’s so early in the process even though it’s progressing fast, it may give me the edge, at the least I want people to know IVE done everything I can to stop it
Kris
I have had PPMS now for 11 years, it has slowly got worse, but i was chatting with my swimming buddies the other day(one of which is a retired Physio with loads of MS experience) I think the LDN hasn’t slowed it but my recovery from fatigue is helped with taking LDN, you can private message me with regard more info regarding LDN, i try and keep my self as fit as possible, within my limitations, i also try and be in company of folk that know how to have a laugh, would run a mile if i could from folk that are all doom and gloom. Also sensible diet helps, saying that I like my chocolate and odd glass of wine.
trish
Hi trish
thanks for that I’ll message you asap
i have always been the same try to be positive etc but it’s a bit doom and gloom here because of how fast it’s gone, in such a short space of time IVE not had time to get used to any issues before the next one starts and I want to do everything I can to stop it
Hi again Kris,
What exactly has your neuro said? Have you had a lumbar puncture or evoked potential tests ?
Moyna xxx
Another mri Friday and lumbar puncture if thhat shows nothing.
I’ve also been chasing another neuro to try to sort all this out, ppms shouldn’t present like this I know that and neither should RRMS, I guess if it is diagnosed as Ms it’ll be some other variant
i am told that parasthaesias don’t count toward neuro exams and spasticity even though it hampers my walking, because I can walk through IT and get around 3-4 miles that it would not count either?
Oh by the way sorry Shelley I didn’t mean to be dismissive if it came across that way, how are you getting on with it all with no diagnosis and what happened to get it to progress to a wheelchair?
Good luck on Friday. What has neuro said to you ?
The key to slowing progression is neuroprotection drugs and that is what they are trying to find.
Moyna xxx
Hi moyna
thankyou yeah I know that’s what theyre trying find I’m just worried about how fast all this is happening
he neuro said it doesn’t look like progressive Ms but doesn’t look like relapses either he can’t work it out
Hello KrisP, I know you weren’t being dismissive, this has hit you really hard and being only 30 its so unfair, but as the others say its not all bad news, sometimes its just about coming to terms with things and changing your outlook… easier said than done i know… Im 49 and have had problems from 2010 when i got really ill weak legs slurred speech double vision ect because nothing showed up they said it was stress, athough i got better i never fully recovered and wasn’t ever the same, physically i could walk ect but was left feeling exhausted and with a tremor, then in 2013 I was ill again following an operation but this time my mobility completely went and although i’m better than i was, now have to use a wheelchair… Im still waiting for answers I don’t tick all the boxes … so no diagnosis but i’m slowly adapting its been very hard i’m a mum and my children need me sometimes i get depressed infact its a daily fight not to allow the depression and hopelessness to take over but i keep battling on. I hope you get the answers and the help and support.
Michelle x
Hi Kris,
I really hope your MRI gives your doctor some idea of what’s going on.
Sonia x
l read on a USA MS site that they have another definition of types of MS. They have one called Relapsing Progressive MS. As no two people are the same - l do not know how they can put us into ‘slots’. l was told l had Secondary Progressive - then l realised that l had never had a remission. So l now say l am PPMS. When l read about people with Relapsing/Remitting MS - it sounds like a different disease all together. Mine came in with a bang! And l have never been without all the problems since. Well, actually the only thing l did get over was the very slurred speech - thank god. And that l put down to having my mercury fillings removed. But one thing l will say - is that - l have not progressed since taking LDN. And one of the benefits is that it makes you feel more positive - more able to cope with other symptoms. Less fatigue - clearer brain - more alert.
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Hi spacejacket
how did yours present I know they usually say it’s a slow not noticeable progression? Did you say yours came in with a bang?
Yes, l had just found out l was pregnant - and suddenly l had vertigo - then loss of use of left side - foot drop - slurred speech and bladder/bowel loss of control. l looked as if l had had a stroke. l went from being one of the strongest and fittest woman - and at 7st. And l became this person who could hardly walk at all. l was told l had inflammation of the spinal cord - then told it was a severe form of migraine - even though l did not have headaches. lt was after my daughter was born that l eventually had a MRI scan and LP. There was no treatment for me - and it was 26yrs later before l even saw another Neuro. Do not even have a MS nurse. lt was not until l joined this forum about 8yrs ago - that l found out about LDN and Vitd3.B12. And l now feel l have progression under control.
Fingers crossed that Biotin will be as good as we hope. Especially, as it is not like toxic like chemo. l shall certainly push to get Biotin - and give it a good chance as it can take up to a year for noticeable results.
l think l would be considered too old now - 67 - for HSCT. And l do not have the funds for it.
I read on the Barts MS Blog of a new category called Bout Onset Progressive MS. Essentially it is someone getting progressive after an initial CIS. One lesion from one CIS that starts into neurodegeneration. These people are possibly less effected that if there were loads of lesions going degenerative. I actually thinks I am in that category.
I had a definite Attack in 2008 just after having the flu-jab (for the first and last time ever). Severe l’hermittes, jelly legs fatigue etc. and recovered pretty well. But foot drop started to appear a year later.
Basically neurone and axon death can happen some time after there has been an onslaught to the nervous system. This attack can be from MS or even whip lash. I know of someone who in their 40s has a progressive neurological problem that resembles MS because when he was in his 20s he tried to hang himself and this caused inflammation on his cervical cord. He was fine for almost 20 years before the problems started to arise.
Moyna xxx