Advice greatly appreciated

Hi, Have been on site for 6 months as have had symptoms for 14-15months. I’m 42 & symptoms particularly affecting left side - numbness, loss of sensation & my leg is the biggest issues. Also had dizzines, balance issues, pins & needles, burning, fatigue. Had continued neuro appts this year & worsening symptoms & examinations each time. 2 MRI’s were clear, Lp in july - no O Bands but neuro advised raised proteins. He advised would refer me for evoked potentials but currently would discharge me. These tests were booked for Oct. My bladder & bowels became involved late sep/early Oct & was seen again by neuro. Bowels virtually ceased working & gp & community nurses had to treat me at home as suffering impaction. Had evoked potentials done, was seen by Gastro & barium enema done, all ok. Have seen neurologist this week who advised my SSEP results were abnormal - ‘large sensory pathway abnormalities in the brain stem or cervical cord’. Asked what this meant - he advised due to lesion not picked up on MRI & causing all issues on left side & especially my leg - also reason for bladder & bowel issue. Referring me to John Radcliffe for 2nd opinion, at my last appointment with him in October, when I asked he advised ‘prob MS’. In the summer he had nentioned poss MS. He is referring me for 2nd opinion as I had no ‘O’ bands. I have done lots if reading on MS over the past 6 months & would appreciate your advice/expertise. Do all people MS’ ers have ‘O’ bands & what should I expect to happen at John Radcliffe

Sorry, didn’t complete message - cat on key board. Really sorry for long message/post…just feeling drained by last year & beginning to understand ‘limboland’. Thanks x

Hi Angeleyes,

do you suspect you’ve got PPMS? If not, you might want to post in the newly diagnosed/waiting diagnosis section as you might get a bit more help there…I can’t answer your question hun, as I never had a LP so truly don’t know too much about them really.

I hope you get a bit more info soon but ou might be wse to post there too

Sonia x

Thanks, yes I am suspecting ppms & so is my neuro & why I posted in here. I did post in new diagnosis section previously back in July. Angel x

Hi Angeleyes and welcome to board. There is certain criteria that they need to be able to diagnose (dx) MS… and symptoms along with lesions showing on the brain is one… if they are still not sure they do a lumbar puncture. It is difficult for the to dx MS without either of these things. Some people with all the symptoms but no lesions and a negative LP will get a dx of ‘possible MS’ or ‘probable MS’… as your neuro has done. It is possible that the John Radcliffe will have a newer and better MRI machine. Some lesions don’t show up well on the older machines… so I assume they will give you another MRI to see if they can detect lesions. They will also give you various tests to see how your nervous system is reacting (nothing painful or intrusive). Sometimes if they wait a few months or so and do another MRI lesions will then show up. The same with an LP… after a period of time it might show up as positive. It is a very difficult position to be in… very frustrating for you. But the good thing is that your neuro hasn’t dismissed you (which does happen to some people) but has referred you to John Radcliffe… so he is taking your symptoms seriously which is a good thing. I hope they are able to give you some answers. They will no doubt be looking at the possibilty that you have one of the literally hundreds of conditions that have symptoms similar to MS… although I would think your neuro will have already eliminated some of those which is why he still suspects MS. Best of luck… and please feel free to use this board while waiting for a dx. We all know what hell it can be in limboland. Take care, Pat xx :slight_smile:

Hi, I have a negative LP too (twice) but I do have a lesion on spinal cord which seems to wax and wane on the MRIs. My issues are right leg spasticity. At the moment they think it might have been damage from radiation treatment I had in 1990. Yet my first scan in 2005 was clear. Another neuro disagrees. I am in limbo and have been since 2005. The thing is that MS is supposed to be immune system attacking the spinal cord. But if the LP is negative then the immune system is not attacking the cord - but what is? PPMS is the hardest to DX and is the one type of MS were mistakes in dx are most made. The thing that I gather is that if they cant find anything else and you dont fit the McDonnald criteria then they will say possible/probable MS. I reakon that I would have a dx of possible PPMS if I hadnt had the radiation.

Moyna xxx

Good luck at the John Radcliffe, I hope you’ll update us

Sonia x

Hi everyone, Thank you kindly for your responses. Yes, my neuro is good by taking my symptoms seriously & confirming via abnormal sensory results that something is going on with me. He’s been very thorough, has advised previously ‘probable ms’ - but does not want to mis diagnose me. Just popped out to Tesco’s to do a shop…there was a MS Society stand in the entrance. Had a good chat with them & given info. Hope you are all having a good weekend xx

Hi Angeleyes.

I’m 43 and was diagnosed last year just before my birthday. I had clear LP (no o-bands), but my c-spine and brain were (are!) sadly infected by numerous lesions on MRI, hence my PPMS dx.

I guess if your MRIs are clear then it should be good news, but hop you get to the bottom of things for your peace of mind.