Forum

PPMS

I am at my wits end, I have had symptoms for a long time but this past year there seems to be no repsite. My last MRI a year ago was clear but despite this my mobility is descreasing. I am falling more frequnetly to the point that my gp is concerned. I wake very night with chronic spasms and my legs constantly buzz and tingle. A recent assessment at a gait laboratory lead to my left leg going into spasm followed by my right it was horrendous. The consultant can’t believe that my mri was clear. I am being referred back to the neurologist but if they repeat the mri am not hopeful it will reveal anything else. Interestungly, my left arm always feels as if it has been over worked and constantly aches. I have been diagnosed with fibromyalgia but this is now being questioned, as so many symptoms don’t fit. If anyone wants to share their story not as a comparable but to help me make sense of what might be happening, I would love to hear from you. Lou x

Lou I can sympathise with you. I had a long time in limbo before my dx of PPMS was made, with a few very interesting possibilities mentioned and major surgery followed by a year’s recuperation before I was sent to a Neuro who promised me a definite dx which he delivered. My mri doesn’t show many lesions and most of the other specific tests for ms weren’t positive either but my LP showed I definitely had it.

It’s an awful process to go through and my heart goes out to you. I would request an LP as if I’d had one sooner I wouldn’t have suffered as much. It isn’t the nightmare procedure some make it out to be though I won’t lie and say it’s nothing but I wouldn’t be overly concerned if I had to have it repeated, as long as you lie flat and drink well afterwards it’s not a big issue.

I hope you get some answers, I hope for your sake it isn’t ms but it’s nice to know either way. If you want any more info from me please pm me, I don’t know what else to say but I’m open to questions.

Cath xx

Thanks Cath… I have never had a LP, as I was told that I was in too much pain to endure it. half my problem is that I have never been that proactivre about pursuing what is wrong and then when I get to appointments I never express myself very well. I can make lists putside of the consultation room but always come away thinking why did I not say this or that. I have my gp on my side as I have fallen in the stret, which was really embarassing and I have been told that if the spams are not brought under control it will keep happening. I am waiting my next appointment but it is with a general neurologist, as the one that I saw previously was a locum and has now left. I am just contemplating whether to look for a specialist and request that I be sent to them. I am at a point where I just need answers, not sure how I will react if I get a PPMS diagnosis as tretament for it is quite thin. Lou x

Hello Lou,

I know it seems a dreadful thing but when I had a LP it was little more than having a blunt stck poked into my bacl. The anticipation was far worse than the reality. Like MS itself, we’re all affacted differently.

Many good wishes, Steve.

Hi Lou, My MRI was inconclusive, then went on to have a LP and that was what gave me my dx. I would definitely ask for one. None of these medical procedures are very pleasant but sometimes it has to be done. As Cath says it is not that bad. I also hope you get the answers you need. Well that’s the footie started so I am off to bed to read my magazine. Although I am Scottish I wish England good luck. Enjoy!!! Mags xxx

Hi again, answered you on the duplicate post… so did not see your concerns about LP. Have to say for me it felt no more than, like Steve says, a blunt stick pressing into back… just a sense of pressure but no pain at all. In your situation I would opt for the LP. It might get you a diagnosis and would be well worth it. Pat xx

I loved my my LP saw it on a screen and everything. Mind you the woman before me screamed the place down and was still in hysterics when I had had mine done.

Thanks all for the support. I am thinking my options through. What I would really like is to be seen my an ms specialist so just doing some research at the minute. Once my surgery rings me back about the missing gai report I will be going back to my gp to see where I go from here. I have spent the whole weekend in bed yet again, as the spasms where just to bad to move around. At least I can move around this site with relative ease, knowing that you are all there to listen. Many thanks Lou x (p.s not sure why the double post happened).

If you do need to have an LP, try asking for a sprotte needle.

http://multiple-sclerosis-research.blogspot.co.uk/2014/01/removing-headache-of-lumbar-punctures.html

This video explains the benefits.

Annie Davis - Lumbar Punctures http://multiple-sclerosis-research.blogspot.co.uk/…/4th…

Interesting, Whammel, thanks. My last LP was x-Ray guided, because they’d tried and very painfully failed before. X-Ray guided was painless and quick. It makes sense, they can see where they are and get straight in. I would imagine it is hugely more expensive than the usual type, but something to bear in mind to ask for if someone tortures you. Just to reassure you, Lou, I’ve had 4 LPs and only one difficult one. Kev x

Apparently, ultrasound is being used for much the same reason, so at least there is some effort going in to improve what can be an unpleasant experience. Having said that, my LP was perfectly straightforward and wouldn’t hesitate to have another if it were ever necessary.

I wish I’d known they did X Ray/ scan involved LP’s as mine took 7 attempts, don’t panic Lou, I was a nurse and have back problems. A year later you can still see every place they tried. I’ll make a note in case they need to repeat it.

Cath xx

[quote=“Min”]

I wish I’d known they did X Ray/ scan involved LP’s as mine took 7 attempts, don’t panic Lou, I was a nurse and have back problems. A year later you can still see every place they tried. I’ll make a note in case they need to repeat it.

Cath xx

[/quote] I’ve got lower back problems too. A couple of prolapsed discs. Don’t know whether that affected the issue. My x-Ray LP was at the John Ratcliffe in Oxford where they have a snazzy neuro unit. The x-Ray room was like the flight deck of a starship. The medicos had to wear shielded aprons. When I felt the first slight twinge, I thought ‘here we go’ and got ready for the ride, then the doc said ‘Right, that’s in position, I’ll get my colleague to take the sample, and you’ll be done.’ Relief!!

Kev that’s my problem too, luckily the lower back is better than the neck though, I had to have a new disc there. I had my LP at Preston hospital where they admitted me to and they just did it on my hospital bed. Luckily I don’t think they’ll have to repeat it. I do think the first few attempts were by a junior doctor as eventually she got someone else and he got it on his first attempt. I’m just relieved it gave me a definite diagnosis as the years in limbo were tortuous.

[quote=“Min”] I’m just relieved it gave me a definite diagnosis as the years in limbo were tortuous.

[/quote] Yep, same here. Not a club I’d want to join, but far better this than being all on my own with a mysterious neuropathy.

Thanks for all the replies. I was refused an Lp a few years back because of the pain I was in and a prolapsed disc at the time. I have spent the last 5 years getting over a minor car accident and a lot of opinions along the way. I now trying to get doctors to look at my symptoms for what they are or have always been. Oh well, I have a neuro appointment next month, with a general neurologist, which I am thinking about challenging as I want to see a ms specialist. I will let all know how I get on. Thanks again Lou x

Lou it doesn’t matter what kind of Neuro you see, you just need to see someone who is determined to find out exactly what’s wrong with you. They don’t give a dx of ms without being certain and they’ll all do the same range of tests. I just hope the Neuro is good. Do yourself a favour and make lists of questions and symptoms include approximate dates each symptom started as these are what they want to know. Good luck and please let us know how you get on.

Cath xx

My MRI showed inflammation so I need a LP, I’m seeing a eye specialist also my neuro is a ms specialist at preston hospital I need a provoked protenal test my disability has decreased from walking normally to unable to walk without crutches which I borrowed I’m only getting fast tests now cause I changed gp.

Hi Alysea, good luck with the tests and the LP. To people who haven’t lived with these symptoms I’m sure saying ‘I hope you get a diagnosis’ would seem very strange… but on here we know what hell it is to have symptoms but no diagnosis… so I hope you get a diagnosis if that is what you are hoping for. Let us know how it goes, Pat xx

Alysea Preston hospital is where I went to get my dx. They were very good and the Neuro promised to get me a dx and did this. I was supposed to have my LP as an out patient but they admitted me for 3 days and did it. Others I’ve spoken to in my area had the same done so don’t be worried if you get a last minute phone call asking you to go in and prepare to be there for at least that length of time. Please let us know how you get on.

Cath xx