Hi everyone, its my first time to post but all sorts going through my head! I would be so grateful if you could read my post and I would appreciate your thoughts. Thank You. 11 years ago I was diagnosed with optic neuritis after my first child was born. I also developed Trigeminal Neuralgia and restless legs and arms (both still ongoing and getting worse). My GP suspected MS so had the usual tests done and thankfully all clear. I was prescribed meds for my TN and restless legs and arms, both of which only had to be increased in the last 6 months. In February gone by I woke up during the night with a numbness/coldness in my head. The next day I had a numbness in left side of face (opposide side to my TN). Then a few days later developed numbness in my left arm and leg and still getting bouts of numbness/coldness in head. The numbness in left leg is more pronounced when taking a shower. Also have been getting tingling and tightening around my rib area. A few days ago I developed a hand tremor while holding a fork, couldn’t stop my hand from shaking but am fine since. Yesterday got pins and needles in both feet and left hand. My TN is also flaring up and the moment. I also get itchy burning feet in bed which may come for a week or so and then its gone for another few weeks. I finally went in to my GP who did a neurological exam and found hyperrelexia in upper and lower limbs with clonus. She said the signs are worrying of MS. She sent me to A & E where they did a brain scan and it was clear. I am waiting on appointment to see a neurologist. I am hoping he will do a spine xray and a lumbar puncture. I also have balance issues but only when climbing stairs, need to hold on to the rail etc and concentrate where I am putting my feed. I am also very sensitive to sudden loud noises where I shout out of me (unintentional) and its like a shudder goes through my whole body. Would be very grateful for your thoughts. One minute I am thinking it has to be MS, next I’m thinking maybe not.
Thanks agian xx
Hi
Well if the brain scan was an MRI and it was clear, it’s perhaps not MS. But it does sound like you need to see a neurologist to determine what is wrong.
It’s odd because quite a lot of the things you are saying do fit with MS. But then, quite a number of diagnoses can do. And if you’ve had a scan and MS ruled out, then it probably isn’t.
There are two things I’d suggest to you, firstly, write a diary of everything that has happened that you think might be connected, with rough dates. Include how long symptoms have lasted and / or whether they’ve stayed with you. The second thing is to phone your hospital admissions team and check that they have a referral to a neurologist for you. If not, you’ll need to see your GP and ask them for a referral.
It actually might be worth your seeing your GP in any case, and ask them what they think. Also see if your blood has been tested for vitamin levels. In particular vitamins D and B12. Deficiencies of one of these can cause odd symptoms.
Hopefully all will be well.
Sue
When you say you had all the usual tests done the first time round. What tests are you referring too? Brain mri, spin mri, lumbar puncture, vep’s, nerve conduction tests etc etc. It’s always good that a brain mri is clear. Im assuming when you went to a&e and had a brain scan it was an mri not a ct scan? Your symptoms do sound Neurological. MS may not be the cause but in your position I would be wanting more robust examination. Hope all goes ok.
Thank you both for replying. 11 years ago I had mri of brain and spine and lumbar puncture, all were clear. 11 years on and so may new symptoms all of which have only developed in the last 3 to 4 months. My gp says its good brain scan was clear but I still cant rule out MS. There may be lesions on spine or may get a positive lp. Latest symptom is burning feeling around my tummy area and pins and needles in the tips of my fingers. Waiting for appt with neurologist and hoping he will do some more tests. Thanks again for your reply.
Forgot to add had blood tests done and b12 and vit d all fine.
Ssssue have visited GP and she said symptoms are worrying and mentioned MS. She also found hyperrelexia in upper and lower limbs with clonus and clonus can be a symptom of MS but we will just have to wait and see. I rang neurologist office and they have my referral so just have to wait now. Thanks
In my area an ‘urgent’ appointment is about 6 weeks, a normal one is 3-6 months!
oh and initially when my mri was looked at by a ‘non’ neorologist they said my spine was clear, when I saw the neorologist he said their were lesions on both spinal and brain.
I had both brain and spine MRI and was told it was fine. I then went to see ms neuro who said that there were lesions on spine and brain which h had been missed. I was diagnosed in 2016 with ppms.