Hello, I’m new to this so i hope I’m doing it right! I’m wondering if I could get some advise please to help me. I’ve been having many symptoms for over a year now, some come and go while others are a permanent fixture such as fuzzy hands and feet, loss of sensation patches on my legs and arms, feelings of something crawling on my skin and little pin pricks or ‘bee stings’. The last few months there have been more ‘embarrassing’ problems. My walking has slowed down alot and when I try to walk fast the back of my calves are painful. I can wake in the morning feeling as though I’ve run a marathon!
Over the last few months though my ribs have been very uncomfortable, they can feel tight or I get shooting/stabbing through them, I also get muscle cramps at the bottom of my ribs, but the strangest one is the feeling of the muscle/diaphragm under my right rib ‘fluttering’ mainly when I sit or lay down. Does anyone else have these same symptoms?
I have been seeing my neurologist for a year now, she has put me on Ropinerole for restless arms and legs which has stopped all of the involuntary arms and leg movements but hasn’t improved the other symptoms. I have had MRI scans on my Brain and spine, they came back clear so she has ruled out MS. I spoke to her recently and she agrees that my symptoms have got worse so I have just had another MRI on my lumber spine and surrounding nerves. I’m due another brain scan in November. Did anyone else’s scans come back clear?
Its not uncommon for scans to come back clear but its puzzling because that still leaves you looking for an explanation of symptoms which have not gone away, so I’m glad you have had the further MRI and that you have the brain scan lined up in November and I hope they will help to provide answers.
I looked up side effects of Ropinerole which I’m sure you may have done as well to see if they might be linked to your other symptoms.
It would appear on the face of it, to be good news that your neurologist has ruled out MS but the other MRI results and the brain scan will help to cast light on whether there is something there.
I would keep on seeking advice in the meantime from your GP and your neurologist in relation to your other symptoms both for an explanation of their possible causes and to perhaps look for medications that might alleviate them. Hope that helps.
Hi, it took years and years…I mean 22…before anything showed up on my many MRIs…I was diagnosed with Spinal PPMS in March this year! Spinal MS is rare. My neuro told me I am only the 2nd person he has ever seen with it in many years.
It was my 17th neuro, who was much more thorough and did lots of tests for rare causes of my problems ie no mobility at all, loss of bladder and bowel control, painful heels, severe fatigue, stiffness in my legs.
Over the years I have tried different medications, but never had any DMTs.
I hope you find a reason for all your symptoms and sooner than I did!
Hi Matt. Thank you for your reply. I have looked at the side effects of Ropinerole but the symptoms started long before taking it, so I’m not so sure. I know they can cause my nausea and cold sweats/shaking though. Thank you for your advise, I should have an appointment with the neurologist in a week or two so I’ll see what happens.
wow 22 years! You poor thing, that must have been so frustrating. My neuro just did the lumber spine and sides MRI as she thinks it is affecting my lower half more. I have trouble with my heels too, they can feel like a weird sensation of cold and then go very numb, when I stand it feels as if I have holes in my heels. my feet can also have this odd sensation of cold even in this lovely weather. I say cold but it’s not cold as in temptreture cold. My feet actually feel warm to touch. All very strange! Thank you for your help x