Good afternoon all,
1st post !
Looking for some general advice. Male now 54, Symptoms started a year ago with electrical sensations on face and tingling in both hands, which hasn’t stopped.
Google search prompted two particular articles, MS trust and Guardian newspaper about an author who essentially had HSCT after diagnosis. Third article was Clinica Ruiz . Clearly got concerned after this!
Gp first suggested peripheral neuropathy
From the title, Ive had
1 EMG and blood test- normal
2 MRI 's , first 3T in September, second with contrast last month. 3T showed a few tiny scattered foci of abnormal signal in frontal white matter of both hemispheres, but no demylienation or inflammation For age and number / appearance normal. Foraminal narrowing c5, c6-c7
Second MRI again showed no further lesions, inflammation etc.
3 Neurological exams all normal, 1x GP , 2 x Neurologist, one a top London MS specialist.
Symptoms continue with electrical feeling in hands , twitching before sleep and some night time bladder issues.
Currently taking neuropathic painkiller, seeing Neurologist again in a few months, neuro adamant not MS! Noticed Prof G articles and Graeme (Gcck) mentions of smouldering NEDA
Essentially should i pursue a lumbar puncture to clarify.
Neurologist will only call it if lesions are clearly present. I have MS as exhibited by lesions but they are the same ones I had in 2020. NEIDA because there are no new ones in the last 2 1/2 years though symptoms worsening empirically.
You should definitely push for the LP if MRI’s are inconclusive. They can’t really say no, either. Ask for a MDT (multi-disciplinary team) review of your case too. Just be a nuisance!!
I concur with Graeme. All my systems were inconclusive, apart from some curious MRI anomalies, until I had the LP. It’s not particularly painful, just inconvenient.
Thanks both for the replies. I haven’t got an appointment for a few months, but I noticed Graeme’s comments about his treated initally as stenosis etc.
First MRI, which was 3T, thinking more accurate scan, I did privately, but basically double booked and was reviewed by private MS neuro and a general NHS neuro , who counted the FOCI totalling 4 , giving the formula of 1 per decade, adamant not MS.
The private Neuro then ordered a second MRI with contrast, which came back as no enhancing lesion/ stable .
I take it FOCI and lesion are the same?
Second MRI also shows severe cervical
foraminal narrowing, but cord intact.
Neuro adamant that not MS , and given neuropathic painkillers, will chase up regarding an LP.
Just to add to the potential CSS (Cervical Spinal Stenosis) diagnosis, my spine MRI showed constriction in the cervical area and before I got passed back to the Neurologists, I had a Neurosurgeon carry out an ACDF (anterior cervical diskectomy & fusion) operation so CSS could be ruled out once and for all. In practice, the ACDF made no difference to me and by the time I’d recovered from the op, the Neurologist had diagnosed MS with brain lesions to support it.
I was misdiagnosed with SS for many years before getting a MS diagnosis. No reason, I suppose, why the symptoms could cause confusion in the other direction too. The good news with SS is that apart from a significant operation, you could be fixed, whereas it doesn’t work like that with MS…
Thanks for the advice Graeme
Its a difficult one, want to keep Neuro on side, but still have symptoms
Currently taking neuropathic painkillers, but still have Electrical feeling both hands
Bladder issues and faint tremors. I don’t have an appointment for a few months.
If there was a positive result on a lumbar puncture, where would i stand with treatment, eg could i request HSCT referral, (within London area circuit)