Scared and Confused.

New diagnosis and before diagnosis
1

Hi all

Not sure if I should be here or not - my head is a mess at the moment.

18 months ago I had some odd spasms in my arms, that left my arms twisted up for a few hours at a time - very unpleasant. This happened about half a dozen times over a 2 week period, then passed and was forgotten about. At the time it was put down to stress.

Since then I have had 3 more “episodes”, each one worse than the previous. Last summer I had more spasms and found myself tripping over words, getting tongue tied and feeling generally unwell. This happened again in October 2013, with the spasms being particularly bad in my hands, tripping over words, plus the new addition of blurring in one eye.

Current episode started about 4 weeks ago, and is by far the worst yet. Random spasms in both arms, hands, calves (feels like I have cramp in calves but without the pain, and lasts for several days at a time), funny spasm in one eyelid (different to normal twitching - left me exhausted and dizzy), tremor in random body parts lasting up to 3 hours at a time (again exhausting). I can’t speak properly, my memory has turned to mush and my left hand keeps going completely numb - most bizarre. All episodes have been accompanied by extreme fatigue and strong feelings of depression.

I finally bit the bullet and went to see my GP a few weeks back. She asked me to keep a symptom diary, which I had been doing anyway, just because my body seems set on doing such unpredictable things at the moment! I went back and saw my GP again on Friday, because I am exhausted and increasingly frustrated with my body not doing the right things! She has been brilliant, and has referred me to Neurology. MS is one of the possibilities that have been discussed, and I realise I probably have a difficult journey ahead in the way of tests, before I get any kind of diagnosis, whatever that may be.

I guess I am here because I am scared. Terrified in fact. I lost my mum to MND only 3 years ago, and even though my symptoms are nothing like hers, it still weighs heavily in the back of my mind! It scares me that for whatever reason I appear to have lost control of my body - does that make sense? Having had 4 “episodes” now, I can only assume that once this one passes, there will be another. I can feel my confidence seeping away rapidly, and I am becoming increasingly anxious about driving any distance, in case my arms or hands or even legs decide to go in to spasm whilst driving.

I have been bottling things up for a very long time. Shrugging things off and making light of it. I have a 6 year old daughter, and I try and make it a joke with her: “Oh look, mummy has the shakes again!” or “Oh look, my thumb is stuck in a funny position, how silly!”. After seeing the GP on Friday and getting the Neurology referral, it all finally got too much, and a very emotional day ensued. I broke down in tears and finally told my sister everything that had been going on (had been avoiding doing so). I have also now told a few close friends, and it feels like a massive relief to have done so.

Anyway, sorry, lots of waffle. Guess I just want to get some shared experiences - what is everyone else going through, what is the diagnosis process like, how long did it take etc.

2

Hi Switch,

Im sorry to hear what your going through… Its so hard and very lonely. Im waiting on my diagnosis to be confirmed too but they think its MS and its terrifying - half of me just doesnt want to know. I keep positive thinking that everything will be ok, its hard and a daily struggle. I’m 29 and I have so much planned im terrified now.

On the 2nd of January this year I lost sensation in half of my body and it spread to my whole torso, my right leg became and still is weak and my right hand has still not come back to life yet. I went to A&E with the symptoms and was admitted the 2nd time I went in 3 days (first time they didnt believe me) I stayed in hopsital for 5 days - they took so much blood and tested me for everything under the sun - Im still waiting on my Vitamin D profile to come back. I had an MRI of my head and spinal cord and they found lesions on my brain and spinal cord which was causing the numbness. the day before I was released i had a lumbar puncture and the results take 4 weeks so Im still waiting on that too - but the first part came back and they found inflamation. If/when you have the LP make sure someone is there to look after you, it takes a lot out of you and if you are like me it took nearly 2 weeks to recover from - I couldnt get out for bed for 5 days and had acute pain in my head everytime I sat up. They put me on a high dose of steroids for 5 days and most of the feeling has come back apart from my hand - during the first 4 weeks of taking the steroids the symptoms come and go in waves, one day you will feel ‘normal’ the next day you may feel weak again. its importmant ot remember that. im 2 weeks in and my leg and arm went weak yesterday, I cried and and then remembered the waves. I am due to go see the neuro team in 2 weeks for my diagnosis and I have a repeat MRI in 3 months to see if there are new lesions … I so hope there is not.

From what I have read omega 3 and vitamin B12 tablets are really good to take daily - I have been taking them for a week and a mediterranean diet is the best for MS. and keep exercising too :slight_smile: light yoga I have read is good.

I wish you all the luck with your diagnosis you can message me if you want anytime.

Claudia x

3

Thank you. Last night I had a really good sleep for the first time in weeks. No twitching, no spasms, no pins and needles. Symptom free most of the day… then at 3pm my left leg went numb from the knee down to my toes. That’s a new one! 6 hours later and my leg is still numb. I rang NHS Direct (or whatever they are called this week) and they decided that there was no point attending A and E or anything, and just to ring my GP first thing in the morning. So I guess that is what I am doing.

My foot feels really cold inside. Except it isn’t. To touch it is perfectly warm and there is no swelling. sigh

4

Woke up yesterday morning and my leg was still numb. Went to see my GP, except my GP wasn’t working yesterday, so I had to see someone else. Turned out to be a complete waste of time. She has “made a note” of it, and told me to mention it at the pain clinic on Monday.

Today my leg is still mostly numb on the outside, though I seem to also be having some shooting pains in my heel. How is that even possible? I was woken in the night with red hot pins and needles in my leg, as well as pins and needles in my left hand, though that doesn’t last long.

I’ve noticed, looking through my symtpom diary, that my symptoms seem to affect my left more than my right, other than my right eye.

Opticians on Friday to check on my eye, then pain clinic on Monday. I am setting myself up for the Pain Clinic being a massive disappointment. Got my work capability assessment through to fill in too today, which isn’t really helping my mood (been out of work since Christmas, and swapped from JSA to ESA on advice of my GP a couple of weeks back). No doubt I will be called up to an ATOS assessment at some point. Yay.

5

Woke up yesterday morning and my leg was still numb. Went to see my GP, except my GP wasn’t working yesterday, so I had to see someone else. Turned out to be a complete waste of time. She has “made a note” of it, and told me to mention it at the pain clinic on Monday.

Today my leg is still mostly numb on the outside, though I seem to also be having some shooting pains in my heel. How is that even possible? I was woken in the night with red hot pins and needles in my leg, as well as pins and needles in my left hand, though that doesn’t last long.

I’ve noticed, looking through my symtpom diary, that my symptoms seem to affect my left more than my right, other than my right eye.

Opticians on Friday to check on my eye, then pain clinic on Monday. I am setting myself up for the Pain Clinic being a massive disappointment. Got my work capability assessment through to fill in too today, which isn’t really helping my mood (been out of work since Christmas, and swapped from JSA to ESA on advice of my GP a couple of weeks back). No doubt I will be called up to an ATOS assessment at some point. Yay.