I Don't Understand!!!

Basically I have had symptoms for three years, my neuro says probably PPMS but doesn’t want to give me a formal diagnosis yet. I have all the criteria markers I think so when I see him in April I am gonna ask him straight. What I don’t understand is that I have had three MRIs, one brain and spine and then 2 more brain an each time they tell me the scans show no change. They think my condition is not progressing but three years ago I was running and now I can’t even walk far and my right arm and leg is very weak. I have definitely got worse. So how come my scan has not changed? I am worried that the Neuro says, see you in 6 months. I have developed L’Hermittes, muscle spasm, muscle stiffness etc. How would I know I am having some sort of attack and I could be taking something to lessen its effect, or, is it with PPMS that you just continue to decline and there is absolutely no drugs that can help!

Sorry to rant and if anyone can offer advice it would be much appreciated.


im sorry i dont understand either, it seems that each neuro has their own ideas.

i would think that the neuro was looking for a change in the mri’s to confirm diagnosis but who knows what they think.

they are questions that dont occur to us at the time but that need answers all the same.

i think you’re right in saying that is no treatment for ppms but thats not to say that they cant treat the individual symptom??

i have been ill for 7 years and like you dont think i could define any points in time that i could class as a relapse and symptoms are always there, just to varying degrees. also ive heard it said that ppms has fewer lesions and spinal lesions which are much harder to detect, dont know how much truth there is in that though.

anyway just wanted to let you know you’re not alone and hopefully you can benefit from this site the way i have, its really been beneficial for me to stay sane !!

best wishes

mandy xxx

Hi, no I don`t chuffin understand either!!

It is a minefiled when you can`t get a definite diagnosis.

Ive chuffed about for many years. Heres a quick run down…

1999…saw a neuro privately, had MRI/LP/EMG…normal

2003…after badgering a different neuro, I got a 95% dx of PPMS

2010…another neuro said I had HSP…not MS

2011…another neuro said it wasn`t HSP but PPMS

2112…another neuro said it isn`t MS, but HSP.

Altogether now…aaaarrrrgggghhhh!!!

Now to get back to your questions…

with PPMS it is harder to see lesions…they may be hidden…if no lesions are seen and results of other tests also come back normal…it is hard to dx for sure.

There is no treatment to slow or stop symptoms, but there are drugs to ease them.

If you have periods where your symtoms go away, then it is more likely to be RRMS. There are drugs for this.

I hope you get some useful info soon. i know how you feel, hun.

luv Pollx.

I was dx on Dec 14 with PPMS. I had a CT scan instead of an MRI (as I am very claustrophobic) EPs and an LP and two clinical examinations. One with a Neuro, one with an MS specialist and was finally dx by the latter. Thus I have not had an MRI but the specialist obviously felt that my symptoms and his exam plus the positive LP and EPs were enough to dx me. Teresa xx

It’s quite common for PPMSers to have fewer lesions than other MSers. This is probably because there is more than one disease process at work in MS, and only one of these leads to lesions that are visible on MRI.

The best gauge of someone’s MS is their symptoms and mobility, not their MRI.

Your neuro should know this!

If he’s wimping out again, ask him what your EDSS was when he first saw you then ask him for a new assessment to get an updated EDSS. If your mobility has worsened, your score will have increased - that is a measure of progression, and no MRI needed!

PPMSers don’t usually get attacks like RRMSers; instead they gradually progress (often with plateaus though). That’s why DMDs don’t work for PPMSers - they mainly work against attacks rather than the processes underlying progression. So, no, there are no DMDs licensed for PPMS.

There are things you can do to help yourself though. There are unlicensed drugs like LDN which have a lot of anecdotal support, especially amongst progressive MSers (google ldnresearchtrust). Staying as fit and healthy as possible is also important: eating a healthy diet with a lot of oily fish, taking a hefty vitamin D3 supplement (e.g. 5,000iu a day), exercising regularly and keeping as fit as possible, stretching and keeping as flexible as possible, getting regular physio and not smoking (if you do, please try and stop!).

For what it’s worth, if I had PPMS, I would definitely try LDN. (Your neuro will almost certainly not approve btw. It’s not licensed because it has never been clinically trialled and therefore most medics run a mile. But there are no alternatives for PPMSers and nothing ventured, nothing gained!)

Karen x

Hi Poll i have brain freeze this morning what is HSP? Mariax

Dear Mandy

Thankyou for your reply and best wishes for the future. What I don’t understand is if the MRIs are all showing no change, then why do I feel I have deteriorated quite considerably in 3 years.


Dear Pollx,

Thanks for your reply. How frustrating for you! It’s terrible to be told different things by Consultants. Thanks for your kind words. I guess one has to look on the bright side because there’s always someone else worse off!

Best Wishes

Dear Theresa,

I hope you are coping well. I think I may find out about a MS specialist because I have had 3 MRIs, all showing lesions, clear lumbar and nerve conduction showing probs. Neuro. says probable pPMS but doesn’t want to give me a label yet! I would rather just know. all the time you don’t you wonder if it’s something else.

Best wishes. x

Dear Karen

As ever you are so, so helpful and knowledgeable. Thanks so much for your support and advice. I will definitely question the Neuro when I see him in April. With regard to LDN , I have heard about it and I think I will pursue it. I work with someone who has MS and he was in a wheelchair a couple of years ago and now he is walking (albeit with a stick), so , as you say, it’s certainly worth a try.

Best Wishes x

I agree that you would rather know what is happening to your body than not. It’s a case of the better the devil you know! Teresa xx


im a bit confused after reading your post again, have you already had a diagnosis of ms but are waiting for neuro to confirm that its ppms??

either way i dont know why the scan shows no changes, im in the same boat as you and all i can do is guess, and if he’s thinking ppms then isnt that more in the spine than the brain??

that was my understanding of it but i could be wrong, did you have spinal lesions?

best wishes


Dear Mandy,

The neuro. says he wont diagnose me yet but it is “probable PPMS”. yes do have lesions in both brain and spine I think but he thinks I have only had an isolated attack. I ran the marathon in 2007 (I am a 56 year old female), and a few months later I started to trip up but was still able to run a few miles. Now I can’t run up the stairs, so in my view, my mobility has definitely progressed in the past 3 years. When I see the Neuro in April, I am going armed with many questions.

Good luck and thanks for replying.