I would be grateful for any advice, suggestions and shared experiences…
I do not have a MS diagnosis as my MRI was “normal” which has “ruled out MS”.
Symptoms are only in past 12 months (that I know of)
Sudden onset tremor, bilateral arms and then also legs, predominately arms. Very mild pins and needles feeling, felt weak/numb but they were not weak! I saw GP, very visible tremor, no obvious neuro deficit, had host of bloods NAD and told to see how it went. It went after a day or too. Put down to possible virus or migrane.
Same symptoms returned a couple of months later a couple of days after back injury. Predominantly right side where my injury was and again mostly in arms. Informed doctors of this but also noted that this symptom had occurred prior to back injury. But then also had left sided numbness/“weakness” too. Had a couple of episodes of walking funny, felt like I was going to fall, walking on a treadmill/boat sensation and bizarrely walked like a crab for 100m before realising I was walking like a crab and snapped out of it! This tremor resolved about a week later.
Month or so later, again a couple of days after another back injury and stressful day same happened again. Tremor returned. Referred to neurology and physio. Both said nothing to do with back injury and no weakness evident on examination so they were not concerned. He looked at my previous MRI 2012 after a seizure (diagnosed epilepsy) & said it was “perfect”.Neurologist told me to wait and see. He mentioned a list of things that it could be but probably was not and that I might be “starting with MS”! Cheers!
After this time whist having persistent mild tremor in hands I had strange incidents where for a couple of days I could feel myself talking with a lisp and after that for a few days began joining words together (e.g shut the curtain became “shurtain”, very noticeable resulting in mocking! I never do that and was doing it several times in a day and I do not have a lisp. I didnt know I was doing it as I did it but knew it was strange immediately after. This settled after a couple of days. I often struggle for the right word quite a lot.
Anyways my longest tremor lasted just under 2 months (a few months after the last episode and not associated with a back injury), mild affecting both hands. Doing particular tasks was difficult (I am a nurse, drawing up drugs getting needles in small vials was hard work and taking peoples pulse- the patients could feel my tremor).
I was referred to neurology. I saw a different guy who said “your a smart girl, type all your symptoms into google for a person of your age and you are going to come up with MS. Am I right?” As we all do after my previous appointment and suggestion of MS I searched the Internet and found a lot of my symptoms, hopefully without sounding like a hypochondriac a lot of it made sense to me and seemed to fit. He said he would send me for an MRI to “rule it out”.
Anyways during this long period of persistent tremor it twice got more profound and affected both my legs, it was very visible and felt worse. On the second occasion my face started to feel numb and weak (although it wasn’t weak) I could eat and talk ok, it wasn’t painful but felt like I had been punched in both cheeks and it was smarting, or when your cheeks hurt in the cold weather. I was at work at the time and got upset. The facial weakness had never happened before. It lasted several hours. My colleagues sent me round to A&E as I was at work and I felt like a moron as it was neither Accident or Emergency, a nice doctor examined me again and said it wasn’t a concern as I had no weakness & that GP & neuro appointment was appropriate.
This facial weakness happened quite regularly, for no more than a few hours and still does from time to time.
I also had a few days or so where I was having very blank moments and I could feel myself doing them. For example I went to measure a urine sample for a patient, I remembered to collect it and took it to the scales but just stared at the scales for about 10-20 seconds, then I thought “why have I been staring at scales”, another 10 seconds, “You are just staring at scales”, 10 seconds, “what were you doing before you started staring at these scales”, 10 seconds, look at what is in my hands, 10 seconds, eventually realise what I am supposed to be doing.
Anyways, had my MRI and neurologist said it was fine so that rules out MS. I asked what he thought it could be, I told him my symptoms again as he asked and that tremor was my predominant symptom. He asked what it was like (I did not have it at that point) my tremor had become more gentle almost that it originally, more my fingers were gently moving up and down than a hand tremor) I showed him the movement it makes, I said obviously this is me exaggerating this as it is very mild. He was very rude and said I cannot make a diagnosis off your exaggeration. I need to see it before I can go any further. I was very mad as I could have shown him several months of video tape if I would have known he wanted to see it. I asked about more tests, he said there are always more tests but I wont send you for any until I see the tremor. He told me to go to him in clinic if it happened again while I was at work so I could show him (we work in the same hospital). I contacted him one day when my tremor started, he was very rude at my phoning him and said he could not remember me at all. He said he would phone me back to arrange a time for me to go. He didn’t phone me back so I camped outside his clinic after my shift, when he saw me he was very nice and within minutes declared that my tremor was “definitely essential tremor” now he has seen it. Just a tremor, nothing to worry about, nothing else, just a tremor. A bit puzzled I didn’t think until I got home that that does not explain my speech issues, cognition issues, facial numbness etc.
Most recently I have had patchy tingling to different pasts of my arms and legs and facial weakness for several hours only. And one eye felt like it had a bit of cotton wool in it for 2 -3 days (nothing bad or painful but it was weird- there was nothing in my eye)
Also I have often had shooting pain headaches. Immediate that travel around different parts of my head and then resolve. Both neurologists say it has nothing to do with my epilepsy and no one doctor or physio thinks it has anything to do with back injury.
I spoke to my GP who says essential tremor would have nothing to do with any of these.
So obviously if it is just a tremor and I never get any of these symptoms again then great but I feel like this is not just it and they will keep on happening and no one will take it seriously until it gets worse.
I accept I have had investigation and nothing significantly worrying is wrong and other that my tremor the other symptoms have lasted 2-3 days on and off maximum but it just feels like there is no answer for my combined symptoms. I feel like this could be MS.
Sorry about the essay!