In a bad place, anyone been there?

New diagnosis and before diagnosis
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Hi

I am a regular visitor to this wonderful website - although I view alot I do not post very often.

My story is much the same as a lot of people on here, I am just at the start of my 3rd year with only possible diagnosis’es. I had a brain MRI 2 years ago clear - following on from that I saw a different neuro who diagnosed Chronic fatigue with the dreaded somosensory anxiety. Symptoms over the next 9 months sort of got worse and better if you can understand me. My GP seemed to want to go with the CFS thing but after alot of badgering agreed to send me back to neuro, saw a different one this time who after examining me thought possible transverse myelitus could not rule out ms.

Had a MRI of my spin about 2 months ago - appears to be normal. Saw the Neuro again given symptoms he seems to think it would be better to hurry - and wait and see, could do LP although I am not keen my body just seems to be telling me this will upset things farther and EMG given complaining of stiff calf muscles - terrified of this and what it might lead to. So he suggests waiting 6 months!!! to see how things develop said if it was ms there would not be much he would be doing. Dont get me wrong I am reasonably happy with him he has listened and I have a followup appt.I feel I am turning in on myself happy to run away and hide for a further 6 months in the hope this will go away. I dont want these invasive tests which may or may not show up something - am ~I being foolish in this respect? Trying to hide everything from my wonderful family and keep them protected, doing for them as I always have. My main symptoms have always been stiff calf muscles painful glands underarms in neck claggy sore throat which never goes muscles twitches, some sensory things around jaw like when you have an injection for a filling but not so severe I cant really describe it as numbness but all t6his comes and goes. I feel as though Im about to go down with flu any minute. I think this resulted in the CFS possibility. Im just waiting on an ESA appeal at the moment as my CBased monies have run out - extremely stressed over this you dont just get better after a year if your very ill. Neuro did say that some things do just go unresolved. Should mention that all my problems started after a very bad UTI - was perscribed cipro for this which did not help. Any thoughts appreciated, trying to stay away from Dr Google and live each day to the full Be healthy everyone Hx

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Hello H x There is nothing worse than being chronically ill and not knowing what is wrong. It’s exhauting in itself - daunting!

Personally I would have the tests - invasive or not - if there is a possibility that they may indicate what is wrong - but that’s just me x

Hopefully things will get pinned down in the end without them. In the meatime keep you chin up - I know it’s hard but everyone on here understands and has been in a similar situation x all the best x xxjenxxx

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Hi Smarthope

welcome to the forum.

Gosh you certainly have been given a whole range of different diagnosis and your symptoms certainly could fit any of those as well as other things too.

Making the decision to get investigated is a personal one. Like you I’m in limboland; I’ve had two MRI’s, EMG’s as well as bloods. My neuro offered LP and told me to think about it and then said it wouldn’t help a diagnosis but I think for me if I had the choice now it would be something I would have done. Though searching for a diagnosis is terrifying at least I feel like I’m doing something to help myself. If it is MS then getting a diagnosis might help get access to disease modifying drugs or at least medications to help towards my symptoms. There are also other benefits to having a possible diagnosis in terms of money and work but I think the others that have got a formal diagnosis are probably better placed to give you this advice.

It really comes down to how bad your symptoms are and how much it’s affecting you. I know the thought of MS scared me at first but as a lot of the others will say, having MS doesn’t mean you can’t enjoy life and can’t do the things you want and not everyone ends up in a wheelchair. Most people lead relatively normal lives.

Hope that helps

Good luck smarthope

Reemz

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