Hi everyone,
Sorry this is a long one. I have been having the following symptoms and tests for last 18 months:
Feb 2011 - attack of vertigo followed by achey legs and fatigue just generally weaker and odd intermittent sensory symptoms. Scan done in August 2011 showed normal but ? increased signal optic nerve.
October 2011- Fuzzy headed all of November recovered felt pretty much normal
November 2011 - spine mri showed thoracic syrinx - I have been assured this is not causing symptoms.
December 2011 - tingling hands, mouth and lips, weak legs, loss of balance and feeling like I was in an earthquake (apparently vertigo). This all improved after about 6-8 weeks.
Feb 2012 scan showed new subcortica lesion.
April 2012 - A weird period with a vibrating foot and tight chest.
August 2012 - Vertigo, double vision which I have seen an orthoptist for and have weak eye muscles so have exercises.
Now I am left with fatigue (generally relieved by a short rest) the legs still feel like I run a marathon every night, feel very stiff in back and legs if I try to walk anywhere and some symptoms return when tired and get fuzzy/lightheaded if I over do it. Basically become like a drunk lol. Some bladder symptoms - frequency not emptying properly.
I have now had a lumbar puncture which to mine and I think consultants surprise was negative. I also had a VEP a year ago which was apparently normal. He said he will be keeping an open mind but that it is not MS. He has briefly discussed CFS (not sure if it was a diagnosis or not) but didnt feel like he was confident that it is this but didnt have anything else to offer in terms of diagnosis. I have been given a prescription for my stiffness and aches and pains of pregablin. He has also reffered me for physio for vestibular dysfunction. All in all he had to admit he didn’t really know what is the matter with me. He will see me again in 6 months with a repeat mri of spine to check my syrinx.
My questions are
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Does this sound like CFS. I have looked at the diagnosis criteria for this but don’t think it fits?
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Is there any other diseases I should ask to be looked at for?
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Symptoms like my bladder, whilst I thought it was MS i havent checked them out. Should I get things like this checked out byy somebody else?
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How do you cope living with a big ? over your head?
Really struggling with all this. I had a good job as a staff nurse which I am no longer able to do and I really miss. I have 3 young kids and just so tearful at the moment.
Thankyou for reading if you got this far. Any advice appreciated.
Katie
Hi Katie.
Sorry to hear you haven’t made any progress re a dx 
I don’t really know much about CFS, but from the little I do know, it doesn’t sound like it to me.
Other conditions: If the neuro is stumped, then perhaps genetic or metabolic conditions that don’t show up in the standard tests? I’m assuming that things like vitamin deficiencies have been properly ruled out?
Bladder: Yes, get it properly checked out. Apart from maybe getting you some help, it might provide new ideas about potential dx.
How to cope with the ?: This one, I can’t really help with, sorry I got through my limbo period mainly by misunderstanding the neuro! When he said, “probable MS”, I thought he said, “probably MS” and so I assumed that it was MS from the very beginning and that’s what I told everyone! I suppose dealing with the diagnostic ? is similar to dealing with the MS ? though in that, if you have RRMS, you never know when the next relapse will strike and you never know how bad it will be or what permanent damage it will do. Tina made a very good point in a post the other day about this - basically that people with MS tend to live in the now. It’s certainly what I do. I do make plans (e.g. book holidays, etc), but I don’t think about my symptoms or MS very often apart from to deal with how today is and maybe tomorrow, if I have something special planned. I occasionally think about the future in relation to my MS, but only very occasionally and only to make sure that I’m being sensible (so we will be buying a bungalow as our next house, for example). So I guess it’s a kind of mild denial - it works for me anyway!
Hth.
Karen x
Thanks Karen,
I did have all the routine blood tests for mimics done at least twice whilst this has been going on. I cant remember exactly what but pretty sure they covered everything. The neurologist specialises in MS so was quite thorough. I had come to terms with most likely having MS. The consultant had even started to talk about treatments so it has been a shock to be told its not it now. I’m trying to stay optimistic that I may never have any further problems and improve on current symptoms but seems unlikely as it has been nearly 2 years since the start of the symptoms. Do you know if it ever happens that people have little proof on the medical tests but later develop them and get a diagnosis then? It just all seems so odd. Think I will try the mild denial. lol.
Katie
Thanks Karen,
I did have all the routine blood tests for mimics done at least twice whilst this has been going on. I cant remember exactly what but pretty sure they covered everything. The neurologist specialises in MS so was quite thorough. I had come to terms with most likely having MS. The consultant had even started to talk about treatments so it has been a shock to be told its not it now. I’m trying to stay optimistic that I may never have any further problems and improve on current symptoms but seems unlikely as it has been nearly 2 years since the start of the symptoms. Do you know if it ever happens that people have little proof on the medical tests but later develop them and get a diagnosis then? It just all seems so odd. Think I will try the mild denial. lol.
Katie
Yes, people can start out without anything turning up on the tests and this change later on. No way of knowing when this might happen though
Mild denial is certainly worth a try 
Kx