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Fed up and confused

Hi, i’ve recently just found this forum and thought I would introduce myself and see if anybody can help. I’m a 29 year old mum of a 7 and 5 year old. I work in the health profession. I’ve struggled with my health for approximately the last 2-3 years, can’t pinpoint the beginning of it anymore. My first symptoms were weakness of my left arm with tingling and numbness. Somebody nips me I can barely feel it. I also suffered with headaches almost daily and fatigue. I was referred to neuro and had a normal MRI, except for sinusitis. Should have had a nerve test but didn’t get an appointment through and was discharged back to GP. From then on things seemed to get a bit worse. I have collapses, right side still numb along with weakness. On the left side of my face above my lip i often get pins and needles. Also get pins and needles in arms and legs often but mostly when i’m in bed. I went back to my GP who diagnosed a B12 deficiency. The fatigue continued. I was hoping with the injections over the 2 week period would be a magic cure, it never came. This was about 18 months ago. My B12 has remained normal despite only having those loading injections in the first 2 weeks. Vitamin D was borderline, now also normal. All other bloods normal, except ESR which is always slightly out.

Fast forward to now. I was re referred to neuro due to collapses and query seizures ( after cardio referral was norma).I had an episode at work which appeared to be a faint but remained unconscious for around 2 hours afterwards and was rushed to A n E. I finally came round and was sent home with no explanation. The fatigue over the last year has been much worse…i have been backwards and forwards to the gp for the fatigue. It’s ruining my life. I had a short spell on anti depressants about 2 years ago…im pretty sure i was never depressed. I can go to work for my shifts but that’s it, that’s all i can manage. Can’t think of anything worse than a night out. It’s my best friends wedding next week and i’m dreading being awake all day and night. On my days off i take the kids to school and sleep 4-5 hours while they are there most days. Then i can go to bed around 9-10pm and sleep till 7 the next day and then back to bed for 9.30am up at 2pm again. Along with fatigue i suffer from brain fog. No problems long term but short term i’m struggling. Feel very frustrated with my lack of cognitive ability. I have no sex drive what so ever, not sure if thats the fatigue or what. I struggle to empty bladder properly, am always either constipated or have upset tummy. My eyesight has deteriorated rapidly over the last probably 12 months. Along with the normal cardio stuff i had a normal CT scan.

I was at work in august on my 3rd night shift. I had a seizure and was sent to A n E. They confirmed seizure activity and wrote to my neurologist. A day later i had a phone call from epilepsy nurses. I have had to hand in my driving license, and have a diagnosis of epilepsy and started on some anti convulsant medication. This diagnosis just does not seem right. I don’t know why. I have had a collapse for the 2 hours, along with numerous faints and then this seizure in august. It’s now nearly november and i haven’t seen the neurologist since the letters diagnosing epilepsy. I had an EEG in this time which was normal except the ECG part showed an irregular heart rhythm. I was re referred back to cardio and now have a reveal heart device in my chest wall which is like an ECG but can be inside for up to 3 years to check for abnormality. I’m baffled and fed up. I never feel well, it’s a daily struggle. When i see the neuro hopefully next month do you think I could ask for an MRI to rule out MS? It’s been playing on my mind lately that that is what it could be. Sorry if my story is jumbled a bit…hope you got this far in reading! x

Hi there is a very interesting thread ongoing on the every day forum of this site on B12. B12 deficieny needs to be treated very aggressively - a jab every other day for 6 weeks and then weekly jabs from there on in. Doctors are failing to treat it properly and there is a you tube video and books written about the subject. B12 defiency is an MS mimic.

Moyna xxx

Hi, thanks for your reply. I know that B12 can have many neurological symptoms similar to MS. I’ve also read that lots of people with MS also have a B12 deficiency. I only have yearly injections as the two weeks of Injections sorted my levels out and they are fine now. So surely it doesn’t make sense that that is the cause of my worsening symptoms? I don’t think it causes seizures or blackouts either? I don’t know I’m just frustrated, I’m sure I don’t have epilepsy though!