Sunday 26 October 2014

Again left on MS Society message boards, every symptom Atlas related, had some myself. Looks like MS Society not fit for purpose, what a total farse and waste of money raised

Anonymous
Need some help please
Hi
I am a 48 female and have been experiencing symptoms for a couple of years (at least 10).
I am experiencing the following symptoms now on a daily and often constant basis:-
Pain (widespread) varying from muscle stiffness, to electric shocks, tingling, aching, stabbing, hypersensitivity of the skin and to touch, my ribs feel like I am constantly being crushed and sharp pain behind the sternum.horrendous lower back pain and sometimes I feel like my spine is snapping when the muscles spasm
Balance - comes and goes but tend to fall over if I close my eyes (in shower mainly that happens) but always when walking seem wander to go over to the left. If I stand now I tend to hold onto something.
Sight - can get white spots and get days where the colour fades and everything goes darker - like the vibrancy goes.
Tremor on my left hand most of the time and my little finger and ring finger dance around if I hold my hand out - which was amusing.
Loss of muscle tone in upper legs and arms and abdomen and unable to lift myself up on occassions. But parts of the muscles look tight - my calf looks very odd
Stiffness when I move and after about 100 yards of walking the stiffness in my muscles makes it very hard and painful. I also suffer with restless legs at night and cannot sometimes get comfortable
Spasms in my jaw, upper spine (forcing ribs out of socket and excrutiatingly painful) and legs. Jerking of upper arms and legs which usually happens when I am resting
Swallowing - I am now choking regularly with meals and food take forever to clear the oesphagus. I have also had a couple of episodes of the windpipe closing sometimes half way but about 3 times fully leaving me unable to breath
Troubling in speaking - I often having trouble speaking and its hard to explain almost as if my jaw wont work properly and I often get the jaw spasming and my front teeth clashing - very painful when it happens and it has loosened my front teeth considerably. I often also have trouble remembering words and things I have done which is problematic in work as once I complete a task the following day I dont remember doing something and why I did it that way without looking through the file totally again.
Sleep - go into a very deep sleep where nothing wakes me or I can be awake all night - varies greatly
Poor bladder and bowel control - I have a 60 second warning (most of the time)(sorry to mention that one!)
I have other symptoms too but cannot think of them at the moment
I have previously had an mri scan of my head and neck  - I a remember seeing 3 very white spots on the scan but the neurologist was so convinced I was a time waster and literally told me that I was an unhappy woman not happy with her lot in life. Needless to say I didnt wait around to hear more (that was 4 years ago) and went straight to my gp for a referral to psyc as I was sick to death with not being taken seriously. Despite 3 admissions to AE following severe back spasms (I think I dont feel them as painfully now due to the permanent nerve damage there). I have since had spinal surgery to remove a compression on the spinal cord but found about a year after the surgery I started getting a worsening of symptoms and new ones. I was referred by my gp to a rheumatologist who diagnosed FM but I am no longer convinced of that (although I do have the pressure points) as several symptoms are not typical FM.
I havent sat down and spoken to my gp - but am seeing them later today because the choking and coughing is getting quite scary.
What is typical in Wales these days is that no one takes you seriously and if I were to write all this down for my gp the paper would just be left on the side like a couple of years ago.
I suppose I just want someone to tell me it does sound like MS which will give me the courage to face my gp
PS I should say the specialist rung a week later after I walked out of the appointment to apologise and referred to a neuro surgeon for my neck as he had spotted the compression on the spinal cord.
Many thanks
Linda




Topics Diagnosis

Seen the gp and she has given me antibiotics !!! no ENT referral or further investigation. Mu daughter under strict instructions to ring an ambulance next time and not to wait to see.

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