Hi all, I’ve put a post in the limbo section, but as it’s really aimed at PPMSers, I thought I’d ask here. I wont put the whole post here again.
Im mainly wondering if anyone of you has had a ‘whole of spine’ MRI, they seem quite rare? And how hard it was before you got diagnosed. I’m still trying to find out what’s wrong after 6 years. (negative LP and negative brain & c spine MRI 2008 & 2010)
Jx
Hi,
I had a full spine MRI shortly after my brain one, my GP ordered it. Saying that it turned out that I was diagnosed from the brain scan and LP, there was nothing wrong with my spine. I was diagnosed with PPMS in 2011 within 6 months of first seeing my GP with symptoms.
Hope you get some answers soon.
Sarah x
Hi Jules, I’ve had whole spine MRI twice. Once before dx and once when I changed neuro.
On both occasions they said that there are ‘marks’ on my spine but the could be wear and tear.
I was dx from brain lesions and LP.
I was 2 years getting dx. At first dx with ME. Was sent for ‘routine’ brain MRI by ME consultant. They found ‘bright spots’. That’s when they sent me for whole spine MRI which didn’t show anything much. Eventually I had the LP and that came back positive. It was another year or so before they said it was PPMS (although by then I had figured that out for myself).
So sorry you are spending such a long time in limbo. I really hope they can dx soon.
It would seem so odd to some people saying you hope to get a dx of MS… but only those who have been there know the hell of limbo and that a dx can actually come as a relief. At least you know the devil you’re dealing with!
Take care,
Pat x
Hi, I too had the spine (whole works) MRI, they discovered something new Osteoporosis and a fracture to T1. So very glad to see you here, Pat. Take care, be safe M x
Thanks everyone for your replies.
Definitely looks odd to other people who seem to think we ‘want’ an MS diagnosis!! But after 6 years even my husband is on the same wave length as me. We just want answers! I did get the ME dx in 2008, but it’s aparent there is more going on than that! And I don’t beleive it is ME, I got that dx after 18 months of ongoing symptoms, and clear brain scan. After that, the neuros just stuck to that dx and wouldnt listen to me. This new neuro seem to be very thorough though.
Most articles I read about PPMS, most lesions seem to be in the spine?
Jx
It’s an odd one Jules… very often articles about PPMS will point out that spine lesions are more common… but as I say I haven’t got obvious ones (unless some of that ‘wear and tear’ are actually lesions) but I’m really dx with the brain lesions.
There simply aren’t hard and fast rules for MS. But I completely understand your desire for a dx and therefore hope that they do find lesions on spine. Nobody but others who have been in limbo would understand that!!!
When I first had ME dx I was satisfied with that and believed that what I had… but then I started to get the vibrations/buzzing in my legs 24/7 and when I googled it (ok I know you shouldn’t do that, but I did!) I got thousands of MS links.
Anyway, hang on in there hon… glad to hear your husband is being supportive. Makes a huge difference.
Pat x
Thanks Pat x
My story of MRI scans is:
3 years ago i was in hospital with a double cavity pneumonia, in hospital for 3 weeks 
Cut a long story short and after 750 different antibiotics pumped into me to find a cure for the strain of pneumonia i had, lets just say my immune system no longer existed.
My last week in hospital i was up & walking but started to complain about a dragging foot. The doctors looked into. Took even more blood samples & more student nurses proding & poking me. They found something unusual so sent me for an MRI.
The scan showed lesions on my spine, so they sent me to Walton for a Lumber Puncture. Results came back… PPMS
So in 3 years and after a totaly melt down in my immune system, i find myself on an MS forum.
Maybe i was lucky to get the MRI & LP straight after each other, and a full diagnosis. Rather than the: showing signs of Demyelination (the word they use before MS), It was all a bit quick for me to take in.
But after them all being soooooo concerned what was wrong, they finally had their answer… But since then, they have all just left me to get on with my life and have never to this day contacted me again. It seemed to be a war at the time between caring medical students questioning Neurologists theories and Neurologists having an ego boost.
Pat: Whats dx ? x
Diagnosis
Thanks Dave,
You’ve been through a tough time! but good that they diagnosed you quickly. (dx is diagnosis by the way!)
I’m under Walton, (I live in Liverpool) and it’s been a hard slog over the last 6 years. Although all tests up to now have been normal, they haven’t give up on me. They know something is going on, we just need the proof!! (apparently I have evidence of demylination via the neuro exam, but thats just not enough to dx me)
What symtoms did you have before dx, and what do you have now? If you don’t mind me asking that is!
Julie
Dave,
I find your story of being dx with PPMS quite strange. I thought that you needed a year of worsening symptoms to get a dx of PPMS. Not just waking up one morning with a drop foot.
Moyna x
Urmmmmmmmm No Moyna. It was whilst in hospital as explained above. The ‘Gods’ found something wrong after loads & loads & loads & loads & loads & loads of tests, 47 intravenous drips, 750 antibiotics . …and even more tests. I think they were more concerned about the lack of immune system they left me with & hoped i didnt sue, which made for thier fast diagnosis… and also as an answer to their managers questions. Mr Wilkinson came in with an unknown strain of pnuemonia, and has now been diagnosed with PPMS. What the F**K have you done to him ???
Dave, did you have any neuro symptoms before the pnemonia? Do you think it triggered the PPMS? It all sounds very strange. Sometimes a severe virus can cause a condition known as ADEM which would give lesions on brain and spine. My neuro symptoms may have been triggered by either too much radiation or misdirected radiation in 1990. I had treatment for hodgkins lymphoma. The first neuro thinks that but a second thinks MS (poss PPMS) but I have only one lesion on cervical spine and a clear LP.
Moyna x
Yes, before pneumonia my balance was not good and my energy levels were very low, plus i had a very slight problem lifing my foot up to walk long distances. It just seems that my spell in hospital with pneumonia has increased these symptoms and has triggered off more, more so that an MRI scan & LB were carried out soon after & a diagnosis of PPMS given. Im just saying that its know that a traumatic bobily experience can cause damage to the nervous system and trigger off all sorts of undelying illnesses.
I’m wondering Dave if you got the initial dx of PPMS because it was only spinal lesions showing?
I dunno… some of this stuff is so confusing. I agree with Moyna, normally you would get the MS dx and then later get the PPMS one… unless I suppose symptoms have already been ongoing without remission for some time.
Anyway Dave, sounds like you had a rotten time of it and lucky to be alive!
But in terms of the pneumonia it’s a bit of a chicken or an egg argument. Did pneumonia trigger more symptoms of underlying MS, or did you get pneumonia because you had MS and immune system was compromised? Maybe a bit of both?
Interesting stuff to mull over on a wet Thursday afternoon…
Pat x