Feeling low and fed up - new symptom?
So... I've been off work now for 5 weeks with a variety of mainly sensory symptoms, l'hermitte's, parathesia mainly on left in arm/hand/legs/back plus weakness and severe fatigue. I've been waiting for it all to go away (which as its been 5 weeks I've been anticipating) .
I might add I'm not formally diagnosed, I've had mri showing multiple lesions highly suspicious of demyelination, I had a guided lumbar puncture yesterday and I've had VEPs done and am awaiting a repeat MRI spine as they think there is a lesion there but the original images weren't clear enough, plus I've now got an appt next week in clinical neurophysiology outpatients - which I think is possibly nerve conduction tests. I think I'm experiencing uhthoffs - as all the sensory symptoms and fatigue significantly worsen on getting out of shower or bath or in this hot weather. My gp has prescribed me amytriptiline which doesn't seem to have made much difference yet. Anyway, Saturday just gone I felt dizzy and off balance, a bit like vertigo. When I looked to the left everything was moving and I couldn't focus. I got my partner to look at my eyes and he said when I looked left my eyes moved like I was 'on a train looking at the scenery'. So I filmed myself on my phone and I have a clear nystagmus on looking left. Took myself to see optometrist on Monday who said my eyes are healthy and eyesight doesn't need glasses, the problem is not ocular he said but is neurological and I have nystagmus and intermittent double vision so he made urgent referral to my gp, who has made an urgent referral to opthalmologist.
All the tests are just getting on top of me now, I just wish I could get the answer and start some treatment, I've no complaints about my GP or neurologists efforts I just think I feel very very flat about it all and exhausted from all the tests and still in limbo. I had a quick look and I see that nystagmus and double vision are common symptoms in MS. Til now I've had no visual symptoms at all. I just feel I'm having a relapse in the middle of a relapse and that's not supposed to happen!!! Also... A relapse of what??... Rant rage etc over...
Official diagnosis can take a while. My first symptom was 30 years ago, diagnosed in Japan 17 years later. I am also on no medication. My Japanese neurologist stuck me on prednisolone for 10 years, which causes its own problems. Try to remove stress. I know it's easier said than done, but it does make a huge difference. Do not watch the television news, it will only depress you. Read books, listen to music and above all try and stay positive. Having a good rant is very good for your mental health. I do it at least once a month. Do things that make you happy. Your mental health is just as important as your physical health. We all go through visual problems. Hopefully your body will correct itself or you will come to terms with the change. Your MS nurse should give you some helpful advice. Please stay in touch.
Hello @loutoodlelou. For good or bad, you need a diagnosis of some sort; from that point on, plans can be made, treatments sought and most importantly, a big focus on recovery. I’m doing well at the mo but baths and showers play havoc because of the heat. If it is MS, then hopefully your neuro can establish if you’re in a relapse period or not. Be kind to yourself. Everyone would agree that limboland is the worst. You will find once through it all, that you will have developed a new strength and resilience that will surprise you. Stay strong, we have all been there.....x