Pat, For over a year prior to my GP actually saying l had MS - he was saying l had [inflammation of the spinal cord] l think it covers a multitude of possibilities - but back then they were reluctant to say it was MS - in the hopes that it would go away - as many people have one episode - then it goes. And knowing could make the stress and worry work against you.
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Kris you donāt need lesions in your spinal cord to have leg or lower body symptoms. Like Pat I only have lesions on my brain and a positive LP yet my entire body has ābroken bitsā. Iām sure that your Neuro will request further tests if he doesnāt get the answers he needs from those scans. Itās unfortunately one of those frustrating illnesses that canāt be positively proven with a blood or other test as you can with most other diseases.
Good luck with your scan, please let us know how you get on. Just expect to wait, it took many of us years to get a definite diagnosis, and then it wasnāt clear to some of us what type we had until weād been monitored for a while. I hope your wait isnāt too drawn out.
Cath x
Hi Cath
thanks for the info really apreciated
im guessing most issues are in my spine as my previous scan was only late Jan and had no lesions on the brain, also itās the way itās progressing which led me to believe spinal lesions
has anyone had their ppms just plateau off and slow down? I ask this as if it stayed like this I could cope, but in four months so many new problems have come on! Iāve gone from being a footballer to sitting on the sofa with leg and arm pain
Kris I was dx 2 years ago and my progression heās been quite slow. I have had days or even weeks at times when my entire body feels broken and doesnāt do what I want it to, and other days where fatigue hits hard and I could just lie in bed all day or sleep for 24 solid hours but on the whole Iām not in much worse shape than at dx.
I can often do as much now as I did then. Iām very fortunate as Iām still mobile with a stick or crutches and using the walls and furniture when Iām at home. I would say that I probably have more bad days now but I can manage my symptoms better which comes with experience. My symptoms seemed to appear over a year or so and Iām under no illusion that things will always stay like this but I think Iāve hit a plateau.
My Neuro believes that people with progressive ms, even ppms can relapse, where symptoms can suddenly get worse but then settle again. He specialises in ms and I trust him, this may settle down a bit for you. Never lose hope or just give in, most symptoms can be managed, I always look at other people, even healthy ones with no interests or drive and tell myself that there are loads of people out there a lot worse off than me.
Pain is something you donāt have to cope with though, itās unacceptable! There are drugs out there to manage nerve pain. I suffered really badly with it for a long time until we found a regime that suits me. I might rattle with all the pills I take but life with nerve pain is awful. Please see your gp or Neuro, they can help you.
I hope you get answers, please let us know how you get on. Take care.
Cath x
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Well said Cath!
Pat xx
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Hi thanks cath
i really appreciate it
i think Iāve read loads about how it should be slow and prognosis etc that itās got me sown
ive come away for the week to try to relax and enjoy life get some exercise and see how that works, If it makes me better Iāll be a happy man,itlL be an expensive cure though
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Good for you Kris. Being good to yourself is possibly one of the best ways to come to terms and cope with ms. Itās all about learning to live with instead of trying to fight your symptoms.
Enjoy your holiday.
Cath x
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Hi everyone like kris Iāve had symtoms come and go but one thing has stayed is muscle atrophy around my ankles which has worried me. My neurologist dr roberts at Salford thinks my muscle fasciculations and pain is down to benign fasciculation Syndrome. I hope heās right has anyone else had muscle atrophy when they are walking fine? Cheers john
Not everyone is the same iāve progressed badly iām only 36 diagnosed in 2014 i could run in 2013 my 1st symptom was floaters in my sight which i still have walking got worse after a uti i didnt know i had for 6 months i ended up in hospital for 3 weeks then rehab i can only walk about 20 meters with crutches and use a wheelchair now the stiffness/tightness is my worse symptom drugs i take donāt help me really the nerve pain meds help and bladder meds but that is it but now i test myself for uti so i donāt end up in hospital again. iām having physio at the moment i want to get mobile again.
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