I have a history of odd things that doctors haven't been able to explain since I was about 13, am now 32:
Left leg feeling weird - aching, sciatica, tense feeling, just generally uncomfortable.
Restless legs in both legs when lying or sitting for too long
Aching left shoulder, left side of neck and arm. Like a deep ache, odd feeling in left arm.
Stiff feeling in fingers, particulalry left side - usually little and ring fingers.
Migraines with nausea, sometimes vomiting
TMJ on left side of face
These have been around for coming up to 20 years and I've learned to live with them. I did have see a neurologist when I was at Uni and a CT scan came back clear and he told me I was fine.
I saw another neurologist again at 24 because my cousin was seeing him about her epilepsy and he wanted so study other members of the family. They did an MRI of head and neck and said they were fine. Possible hemiplegic migraines. I asked him if I could have MS and he said no. The reason I asked was because I had googled my symptoms....
I also worry because my grandad's brother (on my Dad's side) had Motor Neurone Disease and his other brother had suspected CJD. They both went downhill rapidly and died before I was born but once I knew about it I became worried it was hereditary.
On my mum's side pretty much everyone has migraines and arthritis.
Anyway, about 10 months ago I started a diet ahead of my sister's wedding. I was eating 1400 calories a day and excercising 5 nights a week. After about a month or so I started to get dreadful restless legs. I was pacing my office at work one day waiting for the fizzing achey feeling to wear off. I also noticed my legs never felt felaxed when I was sitting or lying down. They either felt restless or very heavy. I went to the doctor who told me to eat more and relax.
The feelings didn't go away and then I came down with what felt like the flu. I had a hacking cough, slight temp, exhausted, and the leg symptoms got much worse. I felt weak and tired and my legs felt really really heavy and prickly. I went to the ER because I was scared. They examined me and sai I just had a virus, though they did test for cauda equina syndrome due to the weird feelings in my legs. After about a week I started to feel better, but still achey.
Since then I've worried about it amost everyday. I noticed my arms started to hurt while driving and I was getting more tingling in my little fingers and hands. It wasn't debilitating, just annoying. Saw a different GP who precribed anti inflammatories and said it was nothing to worry about, probably a trapped nerve.
Then one day my cheek felt weird, like the dentist anaesthetic was wearing off. It lasted about an hour and went away but I went back to the GP. She did a bunch of tests like could I walk on my heels, was I dizzy etc and said I was fine.
This has happened lots of times since. It lasts a little while and then stops. Usually involves my left side of lips, left cheek and jaw. It's not numbe, it just feels a bit like it. I check in the mirror but my face doesn't droop or anything. Sometimes the left side of my neck feels very tight when this happens.
The one day I was shoping with a friend. I crouched down to look at something in the shop then got up and we went downstairs. As I was walking down the stais I fel a shooting pain down both legs and thought they wee going to give out, but they didn't. I felt very scared though and went home shortly after, where I felt fine. I went back to the GP and told her this and cried in her office saying I knew it was something serious and was it MS. She said no, absolutely not, and the fact that I was working, was going to Zumba one or two nights a week ith no probs etc meant it was just anxiety. She prescribed anti depressants and referred me to a CBT counsellor for health anxiety.
I went 3 times and then quit. It was almost more stressful trying to get out of work and he basically was working on getting me to believe it was all in my head and I shouldn't think such drastic thoughts, but I was still getting all those symptoms I listed at the top of this post.
Over christmas I was out for the day with my Mum. We walked up a very long very steep hill and had a drink in the cafe on top. Walking back down my legs started to hurt and then felt like jelly. I could still get around but felt like I'd climbed everest. I told my Mum but she just said, it was a steep hill, they're just tired that's all. We carried on walking around shops etc and it felt better after an hour or so and some lunch.
Then the past few weeks the aches and pains in my legs have been more constant, my hands feel clumsier brushing my teeth or doing fiddly things, my neck aches on the left side, my legs feel more tired than they should etc. I still go to Zumba and manage fine which it was is so weird, but I have to force myself to go because I don't feel like I have the strength.
I went back to the doctor on Monday and she said I should relax, take more excercise even if I didn't feel like it, and just chill out. She said if I wanted, I could see a private physio for an assessment of my back, so I did.
The physio asked lots of questions and did lots of tests on my flexibility and reflexes. I expected her to give me some stretches to do but she said she wanted to write to my Dr and have me referred foran MRI of my neck and spinal cord. I asked why and she said I had clonus in my left ankle. She said most people probably wouldn't worry but it could be a sign there was an issue with my spinal cord and it was better to get checked before she started treating me.
Now I have to wait for the letter and take it to my GP. Obviously I have googled Clonus and it comes up as a sign of MS, MD, ALS, tumours or disc herniations pressing on the spinal cord but that this is usually only in old people.
I'm terrified, I feel like it's a death sentnece, I don't know what I'm going to do and I keep crying and researching MS. Last night I had a realyl bad migraine with vomiting and my left cheek, jaw and lips have had the numb feeling again. Is that another sign, or is it because I'm tense.
I need some advice, or anyone else's knowledge or experience. At the moment I just want to hide away and cry. Because I don't know what's going on, the dr thinks I'm a nut case, if it's serious then they've ignored me for years etc etc.