CFS or possible MS?

[hamster22]

I saw a neurolgist last year about symptoms mainly affecting my left side.  My left hand and forearm feel very tight and awkward to use and sometimes painful, my left leg also feels tight and heavy.  I occasionally get problems on my other side too but mainly the left. I get a lot of fatigue and can find day today activities very tiring and need to rest a lot in the evening to get through the next day, I only can manage part time hours at the moment.

The neurologist was very understanding and did a thorough examination, he said I had increased muscle tone in left arm and leg, reflexes with clonus both sides and a few other what he would call neurological signs, like positive rhombergs and poor tandem walking.

He referred me for an MRI, this was not my first neuro visit I had been 4 years prior for extreme facial pain and diagnosed with trigeminal neuralgia and then 4 years before that after having isolated episode of left hemiplegia.( MRI done then showed 3very small frontal lobe lesions)

Anyway this MRI came back clear of any new changes so neurologist discharged me saying if it had been something like ms all this time would be lesions showing.
This is obviously good news but 6 months on I still have the same problems and some are getting worse.  

I Have been told my fatigue is consistent with cfs/me but when I saw the me specialist he said he felt further neurological investigations were warranted.  So now I feel a bit confused, my Dr doesn't think the neurolgist would see any point in seeing me again but feel I need some help to deal with my symptoms.  

Am I right in thinking MS has been completely ruled out and  these symptoms could me cfs related? Any advice greatly appreciated!

[hamster22]

thankyou, I had been wondering if I should I just didn't know if I would be pursuing a hopeless road and if a specialist would just say the same thing about MS not being a possibility if MRi doesn't show clear signs.

I also was wondering if it were possable tp have very long periods of symptoms without them easing but also not getting hugely worse.  I mean my problems with my left side started in march 2012 and have been persistent since, the only big change is now my right arm also starting to play up,( it feels like it in bucket of ice sometimes even though it warm tp touch which is just what my left arm used to do!)

If I did have MS wouldn't this over two year period be an unusually long time for a relapse? Its not that im trying to convince myself i don't have ms, just save myself from pursuing a very unlikely road.
Though at the same time I do need answers!

Sorry if this post is a bit garbled, thankyou so Mich for anyone taking time to read.

[Melly81b]

It might be wise to get some additional testing done (ie lumbar puncture).  If your existing neurologist isn't willing to continue testing, find another doctor.  Another thought would be to contact your regional MS Society.  They were a tremendous help in finding a good MS neurologist.  

[hamster22]

So I suppose my dilemma is who is correct! On my first visit to the neurologist he talked about ms and said there were further tests that could be done but the first step was MRI, he then changed his tune on getting the MRI results  (I think from the clinical examination he had genuinely expected it to show something) and when it came back clear or rather no new changes said at that appointment in December it definitely ruled out MS and there was nothing more he could do for me etc.

Fast forward to March and ME specialist says I do need further investigations and hence the letter to my Dr suggesting she re-refer me to neurology.  

Having listened to my Dr explain that another referral probably wouldn't be accepted I feel a bit let down and not sure where to go from here.

I am still managing to work ok, but do struggle with things like cutting food, balance and walking any distances stiffen my leg up more and offcourse the fatigue, thanks for any replys or advice on whether this sounds like something I should pursue neurological wise!

[hamster22]

Hi Kyle, thanks for your reply, yes after being discharged from neurology in December my Dr referred me to an Me/cfs specialist in March. It was he who wrote to my Dr saying that whilst he would be happy to treat me for fatigue management he felt further neurological investigations were
needed.  

My Dr however said that having only seen the neurologist in December he wouldn't want to see me again, so I left feeling that I don't really fit into any category!

[kwarendorf]

Hi Hamster - Welcome to our group.

I'm a bit confused too :-) You said you saw a me specialist. Did you mean an MS specialist? If so, and he felt that further investigation was warranted, I would let him investigate. Where in your timeline did you meet with this specialist?

At this point I'm not sure your regular doc should be involved in the investigation.

Kyle