PPMS Fear!

Hi, I am new to this forum and I fear that I might have PPMS.

About 4 years ago my Irritable bowel started to play up a bit more and I twisted my right ankle badly. I kept going over on this ankle and was told that I obviously have a weakness there. Then a few months later I developed an altered sensations on the left side of my body and my right arm felt heavy and weak. Anyway stress was blamed for that by my GP. I did get better after about 2 months but maybe only about 95%. Then a year later I noticed that I was having difficulty lifting my right leg after walking for about an hour.

Anyway about 6 months ago I finally got an MRI and I have a spinal cord lesion in my neck only. Brain was normal. They did a Lumbar puncture and it was normal - no bands seen. Blood tests for defiencies etc were normal. Anyway the neuro wants to repeat the MRI and LP in 6 months. I think he thinks PPMS although he has not said. My right leg is slowly getting stiffer and I cannot bend by knee to get my foot to my bottom. I had a positive babinski test on right but not on left. So far my left side is normal I think. My right arm which was the problem to begin with is and has been for a long time back at 95%. I dont have any sensory symptoms any more.

My question is the lumbar puncture only useful for diagnosing RRMS and not PPMS. DO most people with a PPMS have a negative lumbar puncture?

Thanks J

Hi I am also new to this forum and like you I had trouble with my left foot. I had the joint replaced in 2009 and since then have had trouble, I was sent to the orthopaedic clinic for inserts for my shoes,nothing seemed to work. I was then sent to the Walton Centre for tests. Bloods, lumbar puncture and steroid treatment, and like you my nerve damage is in my neck C3 / C4 no brain damage. At the moment my symptoms are lack of mobility and my right side is the weakest. So you are not on your own. Eileen

Hi Eileen, Mine I think is C3 too. What was the result of your lumbar puncture? Have the neuros suggested anything to you?

Regards J

Hi Anon, and welcome.

They use lumbar puncture to help them dx all types of MS inc PPMS. It is just one piece of info that is used to help them dx. They also look at MRI and symptoms and progression.

The LP, when positive, shows that an immune response has been active in the central nervous system and not in the blood.

By doing another MRI and LP the neuro is looking at this response and also any changes on the MRI. With MS lesions on spine or brain are separated in space and time. This means that there are lesions in different areas (space) and developed at different times.

Your neuro is doing exactly the right thing in waiting a while and then doing another LP and MRI.

Then, to find the type of MS it is, they monitor a patient over time. If there are definite attacks… or relapses… that then improve…remission… it is usually RRMS.

If the progression does not go through relapses and remissions then it is usually PPMS. The progress of PPMS can still be very slow but it does not improve dramatically (although it can still vary day to day).

All you can do right now is wait and see… but you are obviously in good hands and the neuro is doing exactly the right thing by waiting to see how things develop.

Try to take it one day at a time. This is a great place for advice and help and also to realise the MS, whatever type it is, is not the end of the world.

Take care,

Pat x

Hi Eileen and welcome…

I see you sent me a PM so I’ll answer that now… nice to see you on here!

Pat x

Thankyou Pat and Eileen for your comments. Pat I am just nervous about having another LP as I have had 2 clear ones so far and they were very painful and I suffered severe headaches with both of them which lasted several days. I just cant help feel it an overkill to have another.I just feel the neuro wants to keep going until he finds a positive one!

Anyway I will just have to do as I am told, I suppose.

Thanks J x

Hi Anon my LP was clear, only had 1 done and several blood tests all clear. I do get a lot of neck pain, somedays I can’t move my neck, I find voltarol cream helps with paracetamol. Even in bed I have to take care moving my head, so not to strain my neck. Let me know how you get on. Eileen

Hi, I have also had 2 very painful LPs, both coming back normal.

If you really dont want to have another, you dont have to.

It isnt a test which defines MS is present. It`s used to back up other tests.

luv Pollx

It depends on the practitioner who does the LP. The guy who did mine was marvellous and I had no after- effects whatsoever! Teresa xx

Mine was good too. No pain at all and I did lay flat for a few hours… even when the fire alarm went off and I was wheeled out onto a fire escape…

(those who have known me a few years must be SO bored with that story. I can’t talk about having LP without dragging out my fire alarm story…But it did happen. Was very ‘Carry On Up The Lumbar Puncture’)

Pat x