after receiving clear head and neck MRI my neurologist put my many symptoms down to migraines and discharged me back to my GP. I booked an appointment with my GP who I have seen over the years… the day of my appointment I was struggling to walk, my speech was stuttered and slurred and my hearing had gone in my left ear. She told me there was nothing she could do for me and that it was all in my head. I burst in to tears and walked out. (Well a walk of some kind)
weeks later and with not much improvement I called the surgery and spoke to the receptionist who put me through to the booking lady. She was wonderful and sent my appointments for a new neurologist, an opthromologist and pain management clinic.
Saw the eye Dr Tuesday who said my vision is perfect and that the sight loss is neurological.
saw my new neurologist yesterday who was surprised that I hadn’t had a full MRI. So he is sending me for a spinal one.
I thought my symptoms only started last year when I was admitted to hospital with suspected stroke. I lost use of the left side of my body for a few days. But I have since realised it has gone on longer. When I was training for the half marathon the year before, my legs kept going numb.
I have since suffered with, vision loss, hearing loss, numbness in left face arm and both legs, pins and needles all over, spasms cramping and twitching, slurred speech and muddled words, IBS, sharp pin pain.
Does any of that sounds like it links with spinal lesions??
Dear Bear7, I am sorry about your first GP visit…they sound like a complete idiot?
Yes, I have spinal lesions too and lesions on my brain, which I believe are both common in MS. I am however quite new to my diagnosis and even though I share similar symptoms, cannot determine your condition. (I attended hospital, suspected heart attack. I have lost the use of one arm for three days. Have pins and needles all of the time, numb face and lips, numb legs and feet etc)
Try not to worry though. You have your neurologist’s attention and they are the only person who can fully diagnose. So in readiness for your next appointment, make a note of all of your symptoms. If your symptoms change, phone the neurologist’s secretary for advice. Use a good GP for pain relief and other stuff.
(Did your neurologist offer a course of steroids?)
And in the meantime…eat well, stay healthy and gather those around, who love you.
No steroid treatment yet. I have been put on Amitriptyline and pregabalin to help with the cramping and other pains.
My new neurologist seems great, I feel a lot more confident in his care. My last neurologist told me it was down to hemiplegic migraines. Wouldn’t listen to the fact I didn’t even have a headache let alone a migraine. Thankfully only had two last year.
Hope your family are being supportive. How have you been feeling?
The only things I know about MS are the things I know because I happen to have it. It does sound good that new neurologist is determined ot have a good look at what is going on. With luck, it can only be good news that nothing was amiss with your brain MRI. For what it’s worth, I’ve had MS-related vision and hearing problems, and they’ve shown up on the brain scan exactly where the neurologist expected them to be. But, as I say, I don’t know what I’m talking about beyond my personal experience.
Anyway, I hope you get some clarity soon about what is going on.
Just a quick reply (at the end of my lunch break!) to say that no lesions were found on my brain, but I do have spinal lesions. I also had one on my left optic nerve at the time of my first MRI.
My symptoms have been optic neuritis, eye muscle palsy, numb right thigh, numb feet (when running!), numb torso (the right side a couple of years ago, and it went between numb and feeling grazed or cold, now the left of my torso is numb). I can get fairly fatigued and sometimes get nasty neck pain but that may well be a stress thing, not sure. I’ve had the odd bit of tingling and stuff here and there, including fingers.
All my lesions are in the spine, 3 in total, at last MRI a few months ago.
Majority of my symptoms are;
Very weak left leg, but right leg is also going the same way lately, a numbed gloved sort of feeling in both hands, but left is worse, slight dropped left foot, altered sensation in left forearm, like as if I’ve got a tight sleeve on against my skin.
If I pinch the skin on my hands and arm I can definitely feel it, but theres always this odd muffled rubbery sort of sensation, thats the only way I can describe it.
Did have pins and needles on left side of my face when first diagnosed but that gone now.
Dear Claire. Glad that your new neurologist is supportive. Being recently diagnosed with MS, one of my biggest issues is trying to work out what is MS and what is other stuff. I am currently signed off from teaching whilst I get used to living with my symptoms and I have taken this time to recharge. I am reading ‘Overcoming MS’ by George jenelik, which is well known and full of healthily living tips. Although not a cure, it helps me to feel as though I am taking some control. I do worry that I bore my family with it all but I don’t feel ready to join an MS group?
Do hope that you get some answers soon and even given your symptoms, hope that you are given the all clear. There is of course always worse things to bear. Good luck Ali
I am still quite new to MS… and have only got a partial working dx of PMS…
My problems started whilst I was jogging some 12 years ago, but I thought it was Orthopaedic because of the violent, violent, violent pain in my right knee… First neuro missed MS… I did keep asking physios if it was MS, but they said that I was ‘too old’… Wrong…!!!
As I think of things now, I think that I very likely had it from childhood… but need to discuss things with new neuro…
I have only seen my head MRI… don’t know what’s on my spine… I have lesion(s) in my brain, a neat-looking circle of paleness… Is that one lesion or many…???
It sounds like you will get better help now, but, as everyone says, ‘don’t worry’…
Nice to see some fellow runners. although I haven’t been able to run much at the moment. Last week I got a new symptom… shaking from head to toe, almost like having a fit but I can still get words out. Thankfully my daughter managed to film an episode for me to show my neuro. I feel exhausted, I can’t begin to figure out where I’m going to find the energy for work Monday morning. Thank you for all your replies.
I suffer more my left side also. Numbness/coldness left side legs and arm.
My face feels cold all the time on the left side, my phantom of the opera mask I call it. Lol
my legs vibrate and pulse at night, it’s a really peculiar feeling.
Recently I have started to feel really itchy. Not sure if it is related?
I went for a run a few weeks back and at 4K lost all feeling in my legs… I was very close to having a frustrated temper tantrum. I nearly threw my hat in a sulk. I have to laugh as it’s so out of character for me. Thankfully I remained a grown up and stopped myself behaving like a two year old.
I have a half marathon to do later this year and my body is not allowing me to do what I love. Running was always my escape. I feel frustrated and robbed.
although I haven’t been able to run much at the moment. Last week I got a new symptom… shaking from head to toe, almost like having a fit but I can still get words out. Thankfully my daughter managed to film an episode for me to show my neuro. I feel exhausted, I can’t begin to figure out where I’m going to find the energy for work Monday morning. Thank you for all your replies. 