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limboland!!

I am sorry for posting again but i am sick of being in limbo. I have been ill for 13yrs and after 4 yrs i more or less got the gp to diagnose m.e/cfs because nothing could be found. I had a brain mri which showed nothing and just about every other test you can have and everything was always normal. I was told to get on with my life and stop worrying. I tried to keep my job as long as possible but i got finished 7 yrs ago on medical grounds. I had a bad attack about 5 yrs ago which i was bedridden from for a few weeks and i then had another brain mri scan which was clear.

Last November i had a bad attack again which gave me vertigo, sore left eye, awful fatigue, headaches etc and i haven’t been the same since but i have improved. I had a brain mri earlier this year which showed 6 lesions. Dr footitt said if he had just saw my scan before i walked in the room he would have definitely diagnosed ms because of the shape etc of the lesions. He then said i was in better shape than he would expect so to have a lumbar puncture. I had this 3 months ago and it was negative, i haven’t saw the neuro to discuss this. I just saw my gp who read the fax out and said it needed to be discussed with Dr footitt. I have phoned his secretary a few times and she just says oh yes you should be on the waiting list to see him again.

What do you do in the meantime if you have another relapse/attack? The secretary said phone an MS nurse but i don’t understand how i can if i haven’t been officially diagnosed?

My left eye is odd and feels strained and i don’t know if its ON or not. I don’t want to be just fobbed off again because the LP was negative and i feel a nuisance ringing his secretary to chase an appointment up. I feel i will be treat different because the LP was negative even though 15% of people with MS can have negative LP results.

I am sick of nothing ever being straight forward with my Health

Hi Zipster

Sorry you’re having such a rough time.

Firstly, as you rightly say, a negative LP doesn’t mean you definately haven’t got MS, I’m, sure your neuro will be reviewing you, and hopefully looking at the whole picture together.

What I would suggest though, if you’re still getting eye pain/trouble would be a trip to the optitian. They can usually tell if its ON, and you will have that on record then.

It can be so frustrating and upsetting, especially if you don’t feel you’re being taken seriously, and the waits can be interminably long between appointments/reviews.

In some areas you can self refer to the MS nurse I believe.

Best of luck

Bx