Firstly a massive thankyou to the ms society helpline. I was in a right state on Monday and the lady on the phone listened and was very compassionate.
I won’t bore you with all my history but I’m another unfortunate person who has had their life turned upside down coping with neuro symptoms. My symptoms kicked off 2 1/2 yrs ago and I’ve experience all sorts of symptoms - vertigo, tingling, numbness, not feeling right, feeling like I’ve hit my funny nerve which leaves my legs and arms feeling bizarre, jaw/toungue tightening up, strange tightness below my ribcage…the list goes on. The worst is that my body doesn’t like exhertion and I’m not only really able to do 20 mins walking a day. My body feels super strained when walking.
I’ve been seen by so many different specialists over the years (Endo, Tropical Disease Hospital (I used to work in Borneo), Neurology) and have had soooo many tests. I’ve had the usual battle of getting referrals and have worked my way through 4 gps:-) Sound familiar!?
I’ve had the feeling it’s been ms throughout the whole period and have been seen by 2 ms specialists at St Marys and by a top Prof at the National. 2 of them said it’s not ms (but failed to tell me what else it could be) and the other guy is saying there is no evidence of ms but agrees it sometimes takes yrs to show in scans. To date I’ve had 5 mris (brain and spine) and have actually been in a 3T scanner. Nerve conductions done in the summer 2012 were negative. So far all the specialists do not want me to have a LP for obvious reasons.
Naturally I’ve been through periods of extreme distress and have been popped on anxiety tablets. I’ve tried out soooo many holistic treatments/eating super healthily but it doesn’t seem to take away the symptoms. After recent panic attacks the National have popped me in the ‘unexplained symptoms / functional’ category. Hmmm I just don’t buy it. I feel like I’m being brainwashed - I know my body. I used to be super sporty. I really don’t buy that subconsciously I’m frightened of sports I used to do hence it sets off symptoms. Its like trying to tell someone whose broken their leg that its in their head!! Clearly I accept the body and mind are very closely linked.
I’m not sure really what to do. Yes I’m going back to my neuro in a month and no doubt will have another scan. Can anyone recommend the best ms consultant out there and let me know if they have any experience of genetic testing to get a diagnosis. Obviously i don’'t want ms but if I have it I know its best to get treatment asap!
Any advice would be appreciated!!