Last week following symptoms which ive had for the last year or so i have been diagnosed with clinically isolated syndrome and functional neurological syndrome.
my symptoms started when i woke one morning with limited movement in my arm and feeling of numbness… this lasted a few weeks and eventually went although my hand still feels slightly desensitised.
2 months later i had numbness in my lower face , i had been having trouble with a tooth/abscess so at first thought it could have been do do with that, however over a year later the numbness is still here and subsequent appointments and scans with maxillo facial have ruled out the cause of it being dental related.
My last significant episode was around the same time when on getting up from the sofa i had complete numbness in my leg and on trying to put my foot onto the ground my foot/leg would swing out… this only lasted 20 minutes and tbh i hadn’t associated the above symptoms as linked or even considered the fact that it could be ms.
Due to the numbness in my face my dentist advised me to visit the gp, i subsequently had a neurology appt and mri scans in the march and in july, the mri in march showed 2 non specific foci in periventricular deep white mater (which could reflect areas of demyelination) and a signal change in lower face . The july scan showed no further enhancement. The neurologist at the time stated i also had clonus in both legs and would review me again in 6 months time.
Since then I have been experiencing cold patches on my face and thigh, and had severe leg spasms/cramps in my thigh when i have over done things (been on my legs for long periods of time)twitches in my waist area. im continuing to drop things resulting in smashed phone,crockery,cups etc and i generally feel ive lost weakness in my limbs ( i know that all sounds dramatic but i really am turning into someone i wasn’t a year ago)
Fast forward to my appointment last week when i saw a different neurologist. He has basically diagnosed me with clinically isolated syndrome due to the numbness in my face and has said that he believes these latest symptoms to be as a result of functional neurological syndrome. When i asked if i still had clonus in my legs he shook his head.
Whilst i am relieved to have some answers I almost feel more confused than ever… He has said he will see me in a year and if anything significant happens such as loss of vision or one of my limbs stops working then i can contact his secretary. He is one of our top neurologists for our area and has years of experience but i cant help feeling like im even further in limbo land trying to deal with all these symptoms and not knowing what symptom is down to functional neurological or possible ms.
He stated that with cis because lesions are already present that there is a 60-80% chance of a further incident however i am trying to tell myself there is a 20-40% chance there wont be … lol
I still have niggly questions such as can clonus just disappear? or did i ever really have it? and how can he be so certain these latest symptoms are not ms related when i have not had a recent mri? he is the expert so am trying to just forget about it all and somehow hope that by throwing myself into life that these odd things occurring in my body will just go away but with ever present symptoms im finding it more difficult than i thought.
Since my appointment i have researched both conditions more fully… there seems to be conflicting information in relation to dmd at cis stage ? so just wondering if anyone else on this forum has been diagnosed with cis and offered dmds or had a similar journey ? or if anyone can offer any advice id really appreciate it as right now i feel like ive been discarded and i just want this hellish journey to end.
thanks for reading and wishing you all a peaceful and pain free day