Firstly I just wanted to say what a fantastic website and forum. There is so much information and support. Thank you to all those you have set this up and continue to contribute.
Im going through a dark time at the moment. I went to see my doctor recently and explained that I have been having leg problems for approximately 6 years. It started about 6 years ago and then it came back, keeps coming back. I put off seeing a doctor because I kept thinking it’s gone away now and then 2/3 months later it comes back. It’s always my right leg, feels like I cannot walk as well and friends, family have noticed it too. In the last week I have now noticed pins and needles in my right arm and hand and also sometimes in left hand, also some pins and needles in my legs at times.
My doctor was great. She took my bloods and found there was no abnormalities and now she has referred me to a Neurologist. Waiting for the appointment now. I am keeping a log of my symptoms so that I can take this to the neurologist and also for me to keep track because they come and go. I’m scared and worried. Fingers crossed it won’t be MS but the doctor suspects it could be and is making the referral with that in mind. She did ask about visual disturbances and I haven’t had any of them which is good, because she said that visual disturbances are common in ms and it is more likely to be ms if I had visual disturbances (I’m paraphrasing).
You are in fact doing pretty much everything I would have suggested. Keeping a diary/timeline of symptoms is important. It gives you data to share with the doctors.
Your GP thinks it could be MS, but you sound quite sensible in that you’re not too hung up on that as a diagnosis.
Remember that many other diagnoses share symptoms with MS. So, while it may look like MS, it still may not be.
Visual disturbances related to MS tend to be Optic Neuritis, which manifests in several different ways, from double vision to blurriness, usually with colour oddities. Yes, many people do have ON as an early, or even a first symptom. But not all.
Really all I can advise is to try not to worry. MS can be fairly manageable with drug treatments and physiotherapy. Try to eat well and get some exercise (whatever you can do is better than nothing!).
If your neurology appointment ends up being months away, try phoning the appointments team and see if you can sweet talk them into giving you a cancellation. If your symptoms get worse, see your GP again and ask her to resend the referral as an ‘urgent’ case (unless she’s already done this).
You can keep talking to us about how you’re feeling. We’re fairly friendly and are happy to help prop you up while waiting for appointments, tests and the like.
Just thought I’d say hello and give you an update of what’s been happening.
I decided to go privately and have seen a Neurologist. The waiting list on the NHS was too long and they said that they were 4 Neurologists down…couldn’t give me a date.
The Neurologist was very helpful. He had a chat about my symptoms, gave him my gp referral letter and he did a few tests, eyes, reflexes, watched me walk. He’s referred me for an MIR scan. Have this next week.
I’ve had my MRI scan and seen the neurologist again. He said that there are some white spots on the scan which are not necessarily indicative of MS however these spots are more common in older people. He said for my age (34) he wouldn’t expect to see them. He wants me to have a Lumbar Puncture test, which I really don’t like the sound of. The MRI was unpleasant and now another test. I did agree to have it done and he said that this would rule out MS. If it’s not MS I’ve no idea what else it could be, he hasn’t mentioned anything else it might be. I’m worried because I’m still getting the symptoms on and off (pins and needles and walking problems), not all the time but enough to bother me.
Hi N12345 don’t stress out about the Lumbar Puncture. (Don’t stress about anything because it makes the symptoms worse). ask the doctor performing the LP if s/he has experience. take a bottle of full fat coca cola and a bendy straw (which is important as you have to lie flat and don’t want to drown yourself in cola). the reason for this is that caffeine helps. following the procedure lie flat for as long as possible. hopefully this will help prevent the headache from hell. let your employer know that you may need a few days off following this. good luck
Yes totally agree with Carol, it’s not bad had mine in January, I was really worried and the doctor was fine, I even went home by tram and bus. That was not pleasant it was rush hour. Kay