I have been on the member forum for while now nut would like ot ask your opinion of what has happened to me today with my GP.
Firstly my timeline is:
1989 - 34 years old: Optic Neuritis, IBS Severe Depression - Sent for psycho therapy
1996 – 2000 - 41 - 45 years old:
Several Seizures – An EEG performed diagnosed with ‘tendency to epilepsy' and ‘on-going neurological problems’ diagnosed. Very depressed Eye problems Losing hand eye coordination
2004 - 48 years old: Optic Neuritis Confusion Dropping things Foggy days Out of sync feeling
Pavement feels spongy abnormal MRI – ‘possible’ MS.
2004 – present time
BACK / SPINE: ‘Electrical’ sensations in my back which lasted 6 months
EYES: Blurred Vision, Double Vision, 'ghosting' on vision, flashing lights, wear dark glasses in house on really bad days.
SENSITIVITY TO LIGHT: wearing dark glasses in the house
CROWDED PLACES: confusion,
FALLS: Coordination and balance problems (problems walking).
OUT OF SYNC FEELING:
FOGGY THINKING: Concentration and focusing problems,
VERY SENSITIVE TO COLD AND HEAT:
More activity on the MRI and abnormal VEP last December.
My dx was 'realatively mild MS' my GP now wants me to go back to the same neuro and ask him all the questions I didn't ask when I was there - like why are you not monitoring me and can you refer me to an MS specialist. I feel very uncomfortable with this.
Are you uncomfortable with what your GP is asking you to do or with the idea of actually doing it?
If it is the former, then ask your GP to communicate with your neurologist directly (tell your GP that it may be better from one doctor to another, otherwise you are afraid you will sound too forward).
My concern is that as the neurologist diagnosed mild MS with no follow up or support, I am nervous about his reaction to my challenging this diagnosis and even asking him to refer me to an MS specialist seems to question his dx.
My question to you is how would you feel if a patient dichallenged you in this way?
I'm sorry to ask again but this is a real concern My question relates to should I trust a neuro who tells me I have 'mild ms' after nearly 19 years of symptoms and then does not do any follow ups? should I be seeing him again with my questions or should I be asking for a second opinion?
especially when I need questions answered like Do I need to tell the DVLA? Are you going to routinely check my progress? Do I need to tell work? which seem basic but impact on our lives as much as how do I cope daily with no **************?
I wonder if I am allowed to post here. Oh, well. I understand your situation better after reading this. In my opinion, there's no point in trying not to step on toes. This is your life and only you, after all, knows what's happening every minute of every day. By the same token, what's mild to one is not mild to another. If your life is being severely disrupted (and I believe I have seen it is) then you need to appeal for help and say that after 19 years your MS symptoms have become anything but mild (in your eyes) and you need to be put in a MS category and get on a MS drug of some kind to help you cope daily. Indicate to him you hope to continue working, but you feel you need help cognitively and physically to do this, and ask what he suggests, then discuss it. I'm not in the UK with your Health plan, but I feel strongly that it is your body, and you're the only true advocate for it. That part is true here too; if we don't speak up, who will? I say you need to assert yourself before you slip through the cracks of health care as well as the cracks of MS. I hesitate to use the word "demand" but it's almost to that so you don't get run over. 19 years of your life has already gone to this potentially demeaning and insidious disease----don't give it any more if you can help it! Good luck, my friend across the sea! (My hand slipped earlier and I deleted a note from you that had a block on it so I can't write you at all currently.)
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