Not in limbo anymore!

New diagnosis and before diagnosis
1

Hi, I’ve seen my neuro today and been given a diagnosis of PPMS - feel ok at the moment as was beginning to suspect as much. I first saw him in May so it hasn’t been a long journey. At the moment I just feel relieved I’ve been told what the matter is but I’m sure my feeling willo fluctuate!! S x

2

hi sorry to hear your news but at least you know what you are dealing with now ?? im waiting for a dx but every doc iv seen up to now thinks i have ppms just waiting to see the MS specialist next month after lots of test so im hoping i get answers to regards bairdy

3

To both Dogtanion & Bairdy Hang in there kiddo and Keep B*ggering on! Clarexxx

4

Congratulations and commiserations! It may well hit you like a ton of bricks at some stage - please try and remember that this is completely normal, and that asking for help to work through it is a positive step, not “giving in”. I saw a counsellor when I was first diagnosed and it really really helped me to come to terms with it all. You could give some thought to trying LDN maybe? There aren’t any official DMDs for PPMS, but a lot of PPMSers find that LDN helps them with both symptoms and progression. It doesn’t work for everyone, but nothing ventured nothing gained! See the ldnresearchtrust website for info. Karen x

5

What is LDN? Tony

6

LDN is low dose naltrexone. Google ldnresearchtrust for info. Basically it is a very low dose of a drug that is used (in much higher doses) to treat addicts. Some people find it helps with their symptoms (e.g. bladder & spasticity). Some people find it helps with progression. It is safe to use and boosts people’s mood, but doesn’t work for everyone. Because there have never been any clinical trials, and because there are only a couple of small studies of it, it is not currently approved by NICE. Some GPs will prescribe it; a lot won’t. However, you can also set up a private prescription service through an on-line company called E-med. I think it’s about £15 a month. The reason I mentioned it is that people with PPMS do not benefit from DMDs so LDN is about the only option if you have progressive MS :frowning: Karen x