It is now a year to the day since my wife had an emergency appointment with a GP and the seed of Possible MS was planted in our heads and She has just been formally diagnosed 3 days ago on Wednesday!
On that day she woke up with really severe symptoms (on top of other previous problems), some of which have subsided a bit but she has been left with very poor walking and now uses a crutch and still cant go far and is quite limited in what she can now do generally(drives me round the bend ,trying to do things as she says not fair on me as i am at work all day!).
Her Aunt is in a wheelchair but we didn’t then actually know why but asked and she has Ms also.
Been a long journey with a few delays along the way.
March 17th 2017
Gp(not hers) raises request for head Mri and writes to Spinal surgeon who wife had seen for original problem with neck/back.As well as doing bloodtests etc to rule out some other things.
May 20th 2017
Mri takes place
Medical records show Mri report recieved stating abnormal,no further action,patient does not need to be informed and was then archived by Wifes GP. The mind boggles as to why anyone would think a patient wouldn’t want updating if they had such severe symtoms and had needed head MRI and had MS mentioned as possibility!
Wife chases results and has telephone appt with a Gp who tells her Mri shows non specific features suggestive of demyelination. Makes her appt to seen own Gp.
Sees own GP who says probably needs to see Neurology,Spinal consultant will refer,Gp agrees to chase review
sees neurology registrar, who really seemed good and gave a verbal diagnosis of RRMS based on history ,examination and Mri report but cant see scans himself as done in a neighbouring nhs district. Mentions Dmd’s etc and Says we will get an appointment to see him again in a couple of weeks.
Return for next appt and see a more junior doctor who tells us other one has left! Scans still haven’t been viewed etc. Seems like a total waste of everyones time.She says they will get them and view and discuss in departmental meeting in 2 days. We don’t have much faith they will suddenly get scans they haven’t managed in a month so start making arrangements to get copies ourselves.
Scans are viewed and Ms specialist neuro agrees to see my wife in his clinic.
No word,so i suggest my wife chases.As suggested by myself it turns out The junior hadn’t put it through for an appointment, a simple clerical error Delays things by 2 months!
14th March 2018
Finally see the MS specialist who is very apologetic about how long its taken but is able to show us and explain the 2 lesions shown on head and spine MRI’s and give RRMS diagnosis.Apparently we will get letter in 10 days.Talk of DMD’s, neuro physio ,Ms nurse.OT’s etc and now properly in system will get support. Wait and see i suppose!
For anyone going through investigations now i would say don’t be too polite and patient and try and get possible timescales on things and chase things up if needed.
I Really don’t know how she has coped with this year on top of more than a year before having accident at work and eventual dismissal as a result!