@Ali1972 

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Ali1972

👋 hiya

Hi I am just looking into MS as a possible diagnosis. I have had many symptoms for at least 2 years starting with vision disturbance left eye and occipital pain/ neck pain and nausea. Then went onto having an unconscious seizure 2 days after this that started with myoclonic seizures I had had whilst younger. I was already having issues with numbness and tingling to hand and feet and alot of neck pain. I have had multiple fractures and this is due to Osteogenesis Imperfecta a genetic connective tissue disorder. I went onto having spine and head MRI. The head MRI showed 1 old and 1 subacute cerebellar infarct! Having balance issues and tremor with hyperreflexia to all arms/ legs. A neurologist said he didnt think it fit with a stroke! Another blamed it on progressing epilepsy but didnt make sense neither, but habe been on Keppra ever since. Over the last 2 yrs I have had progressive myelopathy upper/ lower limbs and positive to reflex testing and clonus. Im getting sharp shocks down my spine mostly when bending head down so working at a computer not good. My walking outside isnt good and feel my spinal cord is being squeezed as tho it affects my lower legs. I get alot of pain around my ribcage mostly to left side from my back around to the front. I feel as tho my muscles are stiff and am clumsy etc. But mostly fatigue is just awful. I saw a neurosurgeon in Sheffield and had repeat full head/ neuroaxis mri no contrast. I have some narrowing to foraminal C5-6 but he said not the cause of my significant signs he picked up on when examining me. I said I was concerned re MS and he said it could be and may need a lumbar puncture. I have an appt privately with Dr Oliver Lily 11/11/21. I have a fairly complex history so I am really hoping the appt will be useful. I am a nurse myself currently not working due to my symptoms that flared up. My job is very stressful and also waiting on a hip replacement at Leeds, but worried about having surgery with my current symptoms. I hate going out as sometimes feel I get sensory overload that makes my symptoms start and then feel I may have a further seizure. I think knowing why I have had these symptoms will certainly help me find treatment whatever it is. I am an oncology nurse so tend to prepare for the worst and hope for the best! Any advice much appreciated.
@Clune_Ems

Hi Hun your story sounds a lot like mine I only got diagnosis last year. I cried because I been telling the doctors that there was something wrong and they kept saying nothing is wrong with me .Until I had a relapse that lasted 8 weeks numbness pain headache Slurred speech.my husband made me go to doctor and they sent me for scan and I had inflammation of the lining of my brain and multiple lesions on my brain when the doctor called me to tell me I had MS I cried it wasn’t because of the diagnosis it was that I had been telling them for years that I had something wrong and I wasn’t crazy. I’m still having numbness in my face and I can’t walk with out a stick and sometimes I have to use a mobility scooter. because the doctors didn’t listen to me keep pushing your doctors you know your body better than anyone . Stay positive Hun I know it can be hard

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@Ali1972

Thanks Ems, Its good to listen to others stories. I too have noticed some facial numbness but seems in my left eye socket region and goes behind my eye, and think I get occipital neuralgia. I have recently switched GP after calling them with concerns over myelopathy and they didnt call me back for a week! So alot of my problems have been ongoing through lockdown and have had telephone appts with no examination. Eventually I mentioned to the pain specialist I thought I had myelopathy and he referred me. Theyve mostly not looked at the symptoms collectively and blamed the arm pains on carpel tunnel, but tests proved not. I am sure the seizures and white spots on my head scan are linked. My spine doesnt look great but have also had multiple fractures. I have spent a long time getting to see genetic specialists for the. Osteogenesis so the rest of my symptoms I put on hold until I was diagnosed in April with OI type 4. Anyway I will write down everything for the appt so that I dont forget!