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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 Anon

I feel your frustrations. It’s hard having things going wrong with your body and not having an answer. More frustrating when you work for the NHS - I do too.

I have to say MS isn’t the first thing that pops into my head listening to your story and thats because seizures and hours of collapsing aren’t something that I would commonly associate with it. Unfortunately there are so many conditions that can look similar to MS (myasthenia / thyroid / vit deficiency / lymes / sarcoid to name a few off the top of my head) it is a process of elimination. I would have thought that if there was any signs of MS on the original MRI the neuro would have picked this up though a small 5% of people don’t always show lesions particularly in the early stages. I’d be wary to self diagnose and tell doctors you’er worried about MS specifically - this can lead doctors into thinking it’s all anxiety related.

Overall something is definitely not right and it needs investigating thoroughly with a proper management plan. I would certainly try and raise concerns perhaps asks how you’re sympyoms signs fit with epilepsy is there anything else this could be…

You can still go get help for the symptoms you have from your GP - there are meds for fatigue modifnil is the one I remember at the mo but there a couple of others. Maybe these can help make you comfy in the meantime. I had issues with lassitude/ fatigue - try and do some exercise (hard I know) as it will help if you can manage to do something even something light like yoga.

Good luck - sorry if I haven’t been very helpful

Reemz

X

Hi, thank you for your reply. I will definitely be asking the neuro how these symptoms fit with epilepsy. They know that some of my collapses are cardiac as when i had my EEG for epilepsy i had an abnormal ECG. The original MRI was a couple of years ago and just of my head…could anything have been picked up in the very beginning with milder symptoms? I don’t feel I am self diagnosing i’m just worried i’m being treated for epilepsy when it isn’t that at all. When you look on the symptoms list on NHS for MS 75% of symptoms fit mine. My GP has mentioned ME also. I no longer have any vitamin deficiencies yet the symptoms are worse, not improved. I could cope with everything else except the fatigue. I didn’t realise there was medication to take for it, the GP offered me steroids and at the time i didn’t want them because i struggle with my weight too.

Apart front the seizures / blackout your symptoms sound very similar to mine. I have RRMS, diagnosed 2010, first relapse 1998 (pregnant 3x between). I think you have to mention MS to GP. If they’re any good they shouldn’t just dismiss it. A lumbar puncture to show the oligoclonal bands may be conclusive. Perhaps you should ask for a spinal MRI as well as a head one? Hope all goes well. xx

Thanks for your reply Annelda. Wow that was a long time from your first relapse to being diagnosed. Must have been a horrible time for you. I am hopefully seeing the neuro soon as was supposed to have an appointment with them in september, but nothing as yet. I will be taking a list of my symptoms. I’m annoyed with myself because i was offered an MRI when they were querying epilepsy but asked for a CT instead as i’m claustrophobic! Did you have any idea of what it was before you were diagnosed? xx

Anybody else? xx