Hi I gave recently seen a Neurologist who things because my MRI is clear for MS that my symptoms may be due to FND.
I have fairly straightforward symptoms, it's my right leg. Two yrs ago I stood up from sitting down instantly fell smacked my chin in the floor. Couldn't feel my leg it went bluey/purple and cold. I couldn't weight bare, my foot underneath felt like sponge with no ground, it was frightening as I missed my 8wk old baby by mm when I fell. My reflexes were abnormal according to my GP so she referred me to a Neurologist. I was on the waiting list as time went by feeling started coming back but with horrible sensations and foot drop. I immediately thought it was a trapped nerve but it wasn't I had a nerve test and all was ok. My MRIs were clear too. As it stands now my leg as never fully felt right. I'm getting periods of horrid irritation were the nerves meet as the side of your leg. My neurologist says to give possible dx and is referring me to physio and will repeat scan if needed so it sounds to me like he's not sure? . I've already had CBT from an existing muscle condition they said I didn't need it. I feel in limbo, I'm not sure how to get any better or what to say to people.
MRI is good but not God. Not all things are immediately evident on scans. A 'clear' scan does not necessarily rule out a number of conditions. Spine scans are apparently more unreliable at detecting lesions than brain scans unless they are of a certain large enough size and white spots on brain scans can be misinterpreted as natural ageing spots that do occur in older people. Neurologists know all this but don't like you to have this information ! So they often take a watch and wait attitude.
The change in colour/ coldness might suggest a temporary issue with circulation ? Has this been checked out ?
Yes, I have had both MRI's both clear. It's totally out if the blue.
It's unusual apparently, so could be FND but it just doesn't fit right. Then again it never does right?
I'm thinking it could be nerve related. Where I can feel the irritation (like gnawing) is where the sciatic nerve meets the peroneal nerve bunch on my right outer side if my leg.
Googled because I knew it felt like it. If that makes sense.
The issue I have now is, there is a possible FND dx, I don't think drs will be willing to look further into circulation etc...
You sorta get labeled and left.
I'm glad they've left the MRI door open but lost in the fact of we're do I go now?
I'm having physio on my knee next week for possible arthritis so I'm going to bombard the physio with questions about the leg in question.
Physios are usually straight talking and will tell you what they find, as they have no reason to be economical with the truth, unlike many neurologists who seem to be sworn to secrecy when you try to get info from them ! This doesn't mean that their opinion is given any standing by neurologists, however. I too have had abnormal reflexes found by physios but later been told they are 'just oversensitive' by neuro. Yes, abnormal reflexes are a neurological sign and no they are not classed as functional by the neurosymptoms.org website we are all directed to as gospel after being labelled and left to our own devices. It says so there in black and white so I wonder how they are getting away with bending the rules in this way ? !
Sadly, I am all too familiar with the 'functional label' followed by dismissal, to the point of being sent home when extremely ill by biased, unwilling to take me seriously GP, with a urine infection that was not responding to antibiotics , being told that I was just tired and should finish the course of tablets. In desperation I had to ring 111 and on their advice get myself into hospital, as I had actually developed sepsis ! The label and its accompanying bias can be a dangerous barrier to essential treatment.
Best of luck with physio and please keep us informed,
Unfortunately the UTI/sepsis sparked a 2 month relapse that was quite disabling. I managed to get back to work on reduced hours after 6 months off sick, 4 years ago with first neuro attack as I was left with milder disability then. My muscle power and balance are rather worse this time round - I was unable to regain sufficient ability to pass health and safety standards so had to give up my cleaning job. I still do a little self employed work for an elderly neighbour, where I have worked 6 years, on lighter duties than before. I have been lucky enough to be awarded high rate Daily living PIP, so at least have some money coming in.
Positive attitude is key and I do try hard to keep this frame of mind but like everyone, get fed up with the uncomfortable symptoms and limitations at times. The fatigue is a real damper ! I have improved since relapse ( I was a total wreck for a while ! ) but just like the first time, no amount of self physio ( I was refused physio both times ) has restored me to pre relapse level. I am finally under investigation again, after repeatedly nagging GP's who really did not want to refer me to neurology, based on the good ole 'functional' label yet again ! It was my Occupational Health report from work that persuaded them ( Gp's had never bothered to physically examine me ).
You could ask physio if they would be able to print out any useful exercises for you to take home ? I intend to do this if I can ever get referred to them !
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