what to do?

Hi all, Been a while I know, but still coming to terms with how to deal with this ms gorilla . As my neurologist seemed so direct and positive about his diagnosis, I didn’t feel the need to question the ppms conclusion. What does anyone else think? In 2009 I first experienced an inexplicable succession of stupid falls, usually over on an ankle twist and not quick enough to stop a full fall. But I was still going to the gym and not aware of any real problems. Then came what I always thought was a slipped disc or trapped nerve. It happened when I went to pick up a plastic bottle in my driveway I was hit by the most submid locking pain in my waist, I sank to my knees them to my elbows, then flat on the floor and couldn’t move a millimeter without this agonising lock up that in turn caused something like a full body convulsion. After two weeks and painkillers I was “better” except for what felt like a groin strain. That never really went away, if I tried to gym or run it would freeze up a bit and slow me down, but never bothered me excessively. Then in early 2012 I got the back nerve attack again, like the first one, after it passed I was left with something ten times worse than before with severe lock ups, plus now I really suffer from fatigue worse than ever. I am not on any medication, I have no ms nurse, no appointments scheduled, I feel like I may just gradually fall apart without taking some action, medication, clinical trial, anything. So any ideas my friends? Ppms? Or another type? I am 47 by the way if that contributes to my online diagnosis. :slight_smile: I thank you in advance. Paul

Hi there Paul,

Your problems dont sound like MS - more like slipped disc issues.

Have you had MRIs (brain and spine) and lumbar puncture etc. What about a second opinion ? I have 2 neuros who have diagnosed me with different things - long story

Moyna x

Hi Moyna, Yes I have, the back first, lower down, to be told by the specialist (even though I could hardly walk that day) that I might be imagining the pain. I kept going to the doctors to talk about the increasing limp. Then came the second scan which showed up three lesions in my spine, so off to the third scan and LP (LP I ducked out of) but scan showed multiple lesions on the brain. Back to the Neuro, so after two years from seeking an answer to a limp to what is now a ppms dx. with obligatory drunken stagger and dizzy head. I am just questioning it all. I have always thought those initial problems were simply that…back problems, but as you can imagine I am searching for answers.

If you have the lesions then it is probably MS. The LP could have helped to confirm that. I had one and it was fine and it was clear which was why I didnt get a dx of MS. I essentially didnt satisfy enough criteria. My only suggestion is get blood tests to check your vit d and B12. I also take the following supplements Baseline AM, Baseline PM and fatty acids which I get from the essential health clinic website (based in Glasgow). I also take extra vit D. Those vitamins have been specially put together for people with MS. Also people with ppms also find LDN good as it seems to slow down progression.

Yoga is also really good for balance and muscle strength etc.

Take Care

Moyna x

Thank you Moyna, really appreciate your advice . Paul.

Hi Paul, Nice to see you on here.

Ooooh sounds very painful! I’m sorry to say, with the lesions on your spine, it is most likely MS causing the problem.

If it had been a slipped disc or anything it would have showed up on MRI.

Spinal lesions are more common in PPMS… in fact some people with PPMS do not show lesions on their brain and only on spine.

I have lesions on brain and some ‘bright spots’ on spine which could be small lesions or ‘wear and tear’.

There are two types of pain that you can get with MS. First is ‘primary’ pain… this is where the nervous system itself is causing the pain due to the brain or spine lesions. The only way to relieve this type of pain is with drugs.

The other is ‘secondary’ pain. This is when a person’s gait or using a walking stick wrongly, or poor posture, or sitting too long in chair or wheelchair can be the cause of muscular pain. This second one is the sort of pain that can be helped by physiotherapy.

It’s not always easy for even a health proffessional to work out which sort of pain you have, but physiotherapy is well worth trying as it can make a huge difference to secondary pain.

There is also something called neurophysio… I’m not very up on it as haven’t had it… but I assume it’s ways to help nerve pain.

Your GP will be able to refer you. I had a short course of physio. The therapist came to my home (although I think the cuts have stopped this practice) and gave me balance and walking exercises. Very helpful actually and I haven’t fallen for a while now (possibly because I move at snail-rate so chances of falling have lessened!)

Suggest you give it a try (physio that is… not snail-rate!)

I also think you should go on pain medication… there really is no need to suffer as much as you are when there are med’s that help. Many of us on here find Amitripyline good (it is an antidepressant but is used for nerve pain in lower doses), and Gabapentin or Pragabalin (these are epilepsy drugs but also good for nerve pain in lower doses).

In your shoes, I would ask to try one of these drugs AND ask for a physio referal.

You should also be seeing a neuro annually. Why have you not any scheduled appointment?

Hope this helps… and let me know the neuro question… if you have been ‘signed off’ by a neuro that’s no good. You need another referal.

Pat x

If you have MS - and lesions on MRI suggest you do - it sounds much more like RRMS than PPMS or even SPMS, given that your symptoms have gone into remission, almost completely (sorry if I’ve misunderstood your post on this). If you have RRMS you may be eligible of “disease modifying drugs”, particularly Tysabri which can slow down the progression of the disease by two thirds. Neuros are only human and sometimes seem to diagnose PPMS on flimsy/no evidence. You might want to seek a better neuro who will provide you with drugs and/or other treatment.

Thank you all :slight_smile: I just spent half an hour writing more about physio, Neuro, appointments, foot up, memory and more. Then accidentally closed the website and lost it all :frowning: Doctor appt next armed with your advice and suggestions. Paul

The times I’ve done that Paul. When I’m writing a long post (which I do a lot lol) I try and remember to write it in Word & copy & paste it onto here.

Hope it goes well with doctor,

Have a nice weekend,

Pat x

You too Pat, thanks. P x