Last reply 1 week ago
PPMS

I am new to this site and wondered how many people with PPMS used it? Really interested to hear other people’s experience of PPMS. I was diagnosed three year ago after investigations into what was then a mild gait/drop foot problem. Over the past 18 months I have experienced significantly greater walking/balance difficulties and quite a lot of hip pain and stiffness in my upper leg/thigh. Quite a lot of confusion among the medics over what was causing the pain – was it the MS or a separate back problem. Great though the NHS is it is very poor and joining things up. I have been left, after an MRI showing no evidence of MS progression and inconclusive treatment on my back, with increased walking difficulties and constant pain with no real idea about what is causing it. As i said interested to hear other experiences.

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shannon_heppner
1 week ago

Hello , I have just joined this group .. after about 25 years with symptomatic escapades of MS ,I have finally been told I have MS. I am not shocked becuase all the symptoms I have had point to this disease. I have have over 24 hyper intensities on my brain and they have grown since my last MRI, 13 of years ago. I think I have learned how to manage this disease but since I have reached 60 years old it seems like the symptoms have erupted again. I have just turned 64 and was diagnosed two years ago with chronic fatigue without any more investigation as to why I was always tired. In the back of my mind I wondered if it was due to the lesions I have on my brain.
Last August I had a high fever and was hurting all over, the inflammation stats were up , which happens with MS also. I had a numb face in February of this year and that is when the doctor I saw, ordered another MRI. that revealed the lesions I have had for over 20 years had grown. Thus the diagnoses of Possible MS.
I feel as though I have learned to handle the disease and right now am able to function on most days. I pray that I will always have my legs so I walk mostly every day , becuase if I don’t I know I won’t be able to . I have a great attitude so that is in my favor


watsoncraig
1 week ago

Welcome @peterw
Was 5years ago the Neuro told me I had PPMS. Balance and gait were the first symptoms


davidbristow
1 week ago

I have PPMS for a few years now-poor walking, gradually getting worse, but in my case no pain. You quickly learn that every person with MS has something different so the pain you are suffering might be MS but it might not be-worth having that properly checked. Blaming MS for anything and everything that befalls us is the default position but it might not be here so, if you can, it is worth trying to persuade the NHS to look into it further.


peterw
1 week ago

Thanks Watson and David for sharing your thoughts and experience. Yes I have been getting my symptoms checked out but unfortunately it seems back/ hip related pain appears to be as difficult to pin down as some MS symptoms!! Recently had an X Ray on my hip and awaiting results so maybe I will have some answers then.
Sorry David that your difficulties are getting worse – an experience we share!


stumbler
1 week ago

@peterw , I get driven to distraction by some of these medical people!!!!!

MS is causing your balance/gait problems. Our brains are very good at automatically compensating for any related weaknesses. However, this auto-compensation can introduce very bad practice, which can put unnatural pressure on joints and muscles. This leads to pain!

So, MS is probably the culprit, but indirectly.

Ask your MS Nurse to refer you to Neuro-physio for an assessment. They will check your posture/gait and prescribe simple exercises to correct any problems.


peterw
1 week ago

Thanks Stumbler – that is perhaps the most coherent explanation and description I have received so far from anyone!! Much appreciated.

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