Aa
Update: is it a bird, a plane or a UFO?!
Hello everyone...thought id update you all on what has been happening. Finally got to see a new MS specialist Neuro Cons who is lovely!
Unfortunatly she hasnt seen my scans yet (stupid computer wasnt working!). However I sat there for almost an hour and told her every symptom i could think of...(even the ones that thought might not be relevant!)...and she was great and just listened. She admits that things are suspicious however from my clinical presentation and symptoms she she says she is not absolutly convinced i do have MS but that it is still a possiblity. I spoke to her about lyme, amalgam, lupus, Hughes syndrome...in fact i asked her about any other condition that might be mimicking MS and she wrote it all down...and is going to test me for it all...which im so happy about! The only thing she wasnt sure re testing was for mercury ...any advice??
So now im due for repeat MRI, followup haematolgy and bloods (i have been also diagnosed with thromophilia which may/may not be relevant), lupus and lyme testing, carotid scans, VEP, neurophysiology and bubble echo.
Should take about 2 months on the NHS but im hoping i dont have to wait that long...but we will see!
I have spent the last 2 years going from being told that they suspected cancer, leukemia...probable to very likely stroke...to 6 weeks ago not stroke but very probable MS...and now new cons. says she just doesnt know! What a unbelievable rollarcoaster i have been on...words cant express all the fear and deep distress that this has left me with. Being in the medical field in some ways has made it much worse for me. There have been days when i just havent had the energy and have deeply struggled to still do my job efficiently..not easy when ur a physio...who is deeply commited to her job.
All i can say to you 'out there' is remember...in this field of neurology...it is very very difficult to get absolute answers...and remember our doctors arent Gods...and at times do get it wrong ..give conflicting impressions and/or diagnosis. Do i feel angry...let down..confused...scared deep down in my bones?...u bet i do...but somehow...someway, il get through this...and will learn to adapt to this uncertainty. I feel that i have aged ten years in 2 years...and that my life has been 'on hold'...well from now on...im not gonna let this be the case.
Whatever will be will be...and il get through it...as will you. Watching the film 'Shawshank Redemption' again after all these years really helped...i think i cried most when he mentioned 'You can get busy living...or get busy dying'...and for me i have felt that who i was..was slowly 'dying' inside...and that i will no longer accept.
There is so much beauty and love in this world...so many tiny miracles each day that i see both personally and professionally..
So remember.. 'After the darkness...always comes the light'...it may have shades of gray...it might be just a tiny shaft of sepia tones...but trust in that it is there.
Be kind to yourself...and love one another deeply, passionally, openly...we only have one life...and though at times it might be full of pain or confusion...watch out for those special moments...that somehow get you through the day.
Il keep you posted...much love...a friend xxx
Unfortunatly she hasnt seen my scans yet (stupid computer wasnt working!). However I sat there for almost an hour and told her every symptom i could think of...(even the ones that thought might not be relevant!)...and she was great and just listened. She admits that things are suspicious however from my clinical presentation and symptoms she she says she is not absolutly convinced i do have MS but that it is still a possiblity. I spoke to her about lyme, amalgam, lupus, Hughes syndrome...in fact i asked her about any other condition that might be mimicking MS and she wrote it all down...and is going to test me for it all...which im so happy about! The only thing she wasnt sure re testing was for mercury ...any advice??
So now im due for repeat MRI, followup haematolgy and bloods (i have been also diagnosed with thromophilia which may/may not be relevant), lupus and lyme testing, carotid scans, VEP, neurophysiology and bubble echo.
Should take about 2 months on the NHS but im hoping i dont have to wait that long...but we will see!
I have spent the last 2 years going from being told that they suspected cancer, leukemia...probable to very likely stroke...to 6 weeks ago not stroke but very probable MS...and now new cons. says she just doesnt know! What a unbelievable rollarcoaster i have been on...words cant express all the fear and deep distress that this has left me with. Being in the medical field in some ways has made it much worse for me. There have been days when i just havent had the energy and have deeply struggled to still do my job efficiently..not easy when ur a physio...who is deeply commited to her job.
All i can say to you 'out there' is remember...in this field of neurology...it is very very difficult to get absolute answers...and remember our doctors arent Gods...and at times do get it wrong ..give conflicting impressions and/or diagnosis. Do i feel angry...let down..confused...scared deep down in my bones?...u bet i do...but somehow...someway, il get through this...and will learn to adapt to this uncertainty. I feel that i have aged ten years in 2 years...and that my life has been 'on hold'...well from now on...im not gonna let this be the case.
Whatever will be will be...and il get through it...as will you. Watching the film 'Shawshank Redemption' again after all these years really helped...i think i cried most when he mentioned 'You can get busy living...or get busy dying'...and for me i have felt that who i was..was slowly 'dying' inside...and that i will no longer accept.
There is so much beauty and love in this world...so many tiny miracles each day that i see both personally and professionally..
So remember.. 'After the darkness...always comes the light'...it may have shades of gray...it might be just a tiny shaft of sepia tones...but trust in that it is there.
Be kind to yourself...and love one another deeply, passionally, openly...we only have one life...and though at times it might be full of pain or confusion...watch out for those special moments...that somehow get you through the day.
Il keep you posted...much love...a friend xxx
What a lovely post! I couldn't agree with more or have said it better.
Stick with us. We can help you. And it looks like you can help us!
We're here for you. Hang tough!
Hugs,
Zilla*
Stick with us. We can help you. And it looks like you can help us!
We're here for you. Hang tough!
Hugs,
Zilla*
Thankyou so much for your kind words.
Im doing the best I can do...with what I have...and am learning to take each day as it comes.
Why oh why do our bodies attack themselves?...(auto immune)...thats what i keep pondering. What is it that makes our bodies literally 'turn in on/fight itself'? For me there isnt just the physical, but psychological, emotional and spiritual connection. I hope to find a way of trying to help balance and heal all elements. Any help along the way through this process would be so gratefully appreciated.
Evie x
Im doing the best I can do...with what I have...and am learning to take each day as it comes.
Why oh why do our bodies attack themselves?...(auto immune)...thats what i keep pondering. What is it that makes our bodies literally 'turn in on/fight itself'? For me there isnt just the physical, but psychological, emotional and spiritual connection. I hope to find a way of trying to help balance and heal all elements. Any help along the way through this process would be so gratefully appreciated.
Evie x
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