Hi, sorry me again. I had an appointment with my neurologist today who confirmed that my lumbar and pelvic scans were clear. My brain scans in November had also been clear. Frustrating, but good news. So my neurologist is unable to pin point what is wrong. As this has now gone on over a year with new symptoms appearing she wants to try me on medication. I already take Ropinerole for restless arms and legs. The first medication she mentioned was Amatryptaline (excuse spelling). I had already tried this for the restless Arms and legs and it made it so much worse! So would be very reluctant to go back on it. I’m very unsure whether to start medication with no diagnosis. Has any one else been in this position? Thank you x
Hi
As you’ve had clear brain and spine MRIs, there’s no way you could have MS diagnosed at this point. The presence of demyelinating lesions in brain and/or spine is required to diagnose MS. Have a look at https://www.mstrust.org.uk/a-z/mcdonald-criteria This explains what evidence is needed for a diagnosis.
Given this, which hopefully will be repeated when you have your repeat scan(s), it’s difficult for us to say whether medication would be useful or not. Plus, with us not being medically trained, you should really be asking your MS nurse or neurologist for drug advice.
If Amitriptyline didn’t help you in the past, it doesn’t seem to make sense to start it again. Was there anything else they could suggest?
Best of luck.
Sue
I have found magnesium spray to be helpful with spasms in my legs…there is a good one containing essential oils for sleep available on a well known online retailer… so maybe that would be worth try in the meantime?? I’m not sure what your other symptoms are though, will help if i can but still a relative newbie who has had head buried in the sand for a fair while!
Hi Sue, I realise they can’t make a diagnosis with clear scans and that’s why my neurologist is ruling out MS at the moment. My neurologist didn’t suggest any other medication but is going to ring me this week with some suggestions. I did say no to going back on the amatryptaline. Really I was just wondering if any one else had been put on medication to help with symptoms before knowing what they have? X
hi. Thanks for the advice. Luckily I don’t suffer with spasms. Only painful cramps under my ribs and tightness around them. My symptoms that she wants to treat me for are loss of sensation in different areas of my body. Fuzzy hands and feet, numb patches in my arms and legs. I also get muscle jerks in arms and legs. Feeling like a fraud today as I’ve had two good days. I will take a look at the spray to see if it helps with my ribs.
Hi, the muscle jerks you refer to in arms and legs are what I referred to as spasms…So the magnesium may just help x
Oh really. I can be lying there and I get a funny sensation then that part, such as my shoulder and it will suddenly jerk once to three times. I didn’t think this was a spasm as mine are painless. The muscles around my ribs can jerk which is like something out of alien but this does hurt. Do the spasms hurt for you and do you have these problems in your ribs? Thank you.
Mine don’t hurt as such, I may be wrong referring to them as spasms, I don’t know… I don’t get any issues much in the ribs.It’s discomfort rather than pain, if that makes sense?
Oh that’s interesting. I really don’t know. My ribs mainly cause discomfort but when I have the cramps and shooting pains and big jerks that hurts! All very odd!