I’m sorry everybody I hope you don’t mind if I vent a little 20 yrs ago I was diagnosed in London (after a considerable inpatient stay) with primary progressive MS I had a lumbar puncture numerous MRI’s I was told was there was very little they could do to help other than manage symptoms I have moved many times within that period and am currently living in the south west (best I don’t say where as I am about to be less than complimentary about the appalling care I have received) As I moved from area to area I never had a specialist and felt I was lucky enough not to need one Then 2 years ago I had an horrific attack of Trigeminal neuralgia trying to get help with this has been an utter nightmare To cut a long story short They did not accept the original diagnosis on the basis that I wasn’t sick enough ( basically treated me like a hypochondriac)Even though I kept every letter MRI report and lumbar puncture report I got my original professor to write to them Still they wouldn’t accept it and this without an MRI or any treatment at all from my current hospital (all this time I had been in complete agony with Trigeminal neuralgia After many fights and battles and ultimately a formal complaint to the hospital I received an MRI Which resulted in my having a ridiculous number of lesions in my spinal cord and a large lesion in the brainstem causing the Trigeminal neuralgia So by now you would think I would have my diagnosis? No!!! first of all they thought it was Neuromyelitis optica (excuse awful spelling) but no the blood tests were negative, So another MRI all the lesions in the spine and brain stem enhanced with contrast so active lesions, Still no diagnosis ( as there were no typical lesions in the brain!) So 2 weeks ago I had another lumbar puncture and today another MRI The radiologist told me to expect a very long wait people are currently waiting 6mths for results and follow up appointments That will be two and a half years Still in agony still no treatment mobility and bladder horrendous I have tried every possible avenue available to get help and to be honest I’m exhausted and feel I just can’t do anymore but I have this absolute fury inside that is eating away at me! Thank you Rant over
Hi Mully
I’m not surprised you are feeling very frustrated and angry, particularly when you have severe pain that Trigeminal neuralgia can cause.
Sounds to me as if they might still be investigating whether it is neuromyelitis optica or MS. NMO can be sero-neagative, and also produces enhancement with contrast on MRI scans. It is often misdiagnosed as MS. Sadly the NHS is so under pressure in parts of the country that people like yourself are left waiting far too long for diagnosis and treatment. Hope that you get the results much more quickly than the typical 6 months. Keep pestering them for the follow up appointment.
You have the right to all the emotions that you feel, live them, do not push them away, and it will be easier for you in the future
Hi all. This is the first time I’ve looked at this forum in years - prob since I was first diagnosed with MS about five years ago, but I HAD to respond when I saw your comment Molly (?). I’m in total agreement with Cassy. Fighting our emotions never helps. Rather, be curious about them, ‘get up close’ as it were, embrace them, and practice self-compassion. As a trained counsellor and keen practitioner of Mindfulness, it is this kind of approach that has helped me cope with my diagnosis, and what I would suggest to anyone feeling the frustration, ‘unfairness’, and occasional sheer pain that can come with this diagnoses. Take care and be kind to yourself … please!!!
Thank you all for your replies I’m feeling much better now I’ve just had covid (still positive at the moment) but over the worst I didn’t get vaccinated as until I felt I had a diagnosis I didn’t know how I would respond to the vaccine I’ve just decided to the forget about the diagnosis and just get on with my life the best I can plus (no news is good news) The trigeminal neuralgia had started to ease until I got covid then back it came at least I know that my body is trying to recover and I think when I get off all this pain medication I’ll feel much better thanks again for kind replies
Hi Mully,
I have RR MS and TN. I have a neurologist who recognises both though I had to undergo two sets of tests before he confirmed the diagnosis. My TN is horrific but it’s now held at bay by Tegretol (Carbamazepine) which I get on prescription from my surgery. Have you asked your GP for any help? Carbamazepine is the NICE go to drug for TN so there shouldn’t be any objection.
I had TN relapses after vaccinations (Pfizer) which could have been coincidence but I had to massively increase the dose to get it back under control.
Good luck!
Jonathan