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So hard to handle this process

20 years in the diagnosis! Probably difficulties some 10 years earlier than that were linked but I was told it

was Sarcoidosis. In 2000 [now 62 years) I had severe anxiety and depression (this seeming to be for the medics one of the main stumbling blocks to diagnosis), as well as stabbing, electric shock and burning pains. Also muscle twitching etc. i was not seen by a qualified neurologist until 18 months after this. I was MRI scanned, however, and one lesion was noted though not in an area typical for MS. Then I was assessed at the neurology department of a large hospital where the Specialist Registrar advised that his clinical findings were consistent with MS. I was admitted for lumbar puncture and repeat scan, but the scan was no different from the first one. Many, many years - lots of fatigue (which was reported to the Registrar and Amantadine prescribed - I declined neuropathic painkillers), lots of issues with leg pain and stifness, arm weakness here and there. I was finding work stressful all the time, becoming depressed, that kind of thing. Further MRI in 2008 was clear, this was after seeing a Neurologist due to concerns about my balance, burning pains on skin etc. Somewhere in the earlier history there was mention of internuclear opthalmoplaegia. Now, retired, mental health problems continued - bipolar disorder considered and on mood stabilisers. I fell significantly 3 times in one year - head injury in bathroom, required head to be stapled. Legs just giving way. Anyway eventually a few weeks ago I had an MRI of brain and spine ordered up via an Older Adults Consultant (Neurology had passed it due to their long wait). I am told scan is positive for MS. I t has been viewed by the MS nurse who hearing my history thinks I may be secondary progressive. I have to wait untilNew Year for an appointment. In the meantime GP surgery are not really being understanding but are being quite dismissive. I have a fair bit of pain in my head. was told 10 lesions but do not know where they all are. i am so angry and frustrated. It is like they have not taken me seriously all these years. On top of this I am also currently going through PIP review and that is just another battle. I don’t know what to think or what to believe any more.

I know this is rambled but I am so tired. I am just looking for observations/advice etc

I too have been very frustrated for past 4 yrs. I had optic neuritis In my left eye and went through endless tests for 9 months. I had a positive lumber puncture but was told this was not Ms. I have numerous symptoms,burning sensations in my legs and numbness down my thigh,my legs have given way on occasions. I have bladder and bowel problems and fatigue. This April I started having problems with my left eye and so all the tests have been repeated since then. I have been contacted my neurologist this week to confirm Ms as I have now got chronic optic neuritis in both eyes.

Thanks for responding. Yes it is awful. Where are you at with MRI evidence if it is all right to ask that. I just feel as if all of my issues have been shoved to one side as anxiety and depression for many, many years and only now is it coming to a head. Life has been such a struggle to keep going.

I can relate 12 years probable ms and I’m now in a wheelchair…so many symptoms…so many meds…MS can be hard to diagnosed.Still in limbo. 20 years is very long, how frustrating. Lina

Totally can relate. Having to suffer not knowing what is going on can drive you nuts. I am glad you finally know. I am certain it has been very frustrating. Lina