Blossom1965
New member
- Joined
- Dec 3, 2012
- Messages
- 3
- Reason
- Learn about ALS
- Country
- UK
- State
- Warwickshire
- City
- Rugby
Hi all,
I hope u don't mind me posting. I'll explain simply I hope my story,
I'm 47 and live in the UK and started having main symptoms summer 2011, starting with some tingling in my left foot, slowly spreading to my lower left leg, my right foot, lower right leg, left hand/ lower arm and right lower arm/hand. Im under a rheumatologist and have various blood tests, examinations over this past yr. I had problems with dry eyes and mouth ( which i thought were causing some swallowing/choking issues, and have various medications to treat this, they thought it was Sjogrens syndrome but the bloods came up negative, ) Ive also had some stiffness in my muscles a stiff neck with no pain and inflamed hip joints which they think are menopause related, and will calm down after im out the other side of the menopause. ( I also have IBS which is mostly controlled by mdeication)
For the last 3-4 months the numbness has got so much worse in my left side, particually in left arm/hand and my grip is bad in my left hand, cant grip anything tightly so subsequently i drop sooo many things, also im always knocking my arm/hand on doorways, sinks, worktops, everything and anything coz i think i lift my arm to clear things and i dont so always got bruises. My left foot/leg is weaker now, so i tend to stumble n trip. So when I saw my rheumatologist In august seh referred me to have some Nerve Conduction Studies, which came bk normal, but the dr who did the tests was concerned enough abt my symptoms to ask my GP if he didnt mind sending me to see a neurologist, which he did on November 7th. This appt was a disaster, a horrible consultant, just rude, didnt listen, kept interrupting ( my husband came in with me ) gave me the quickest examination in the world ( spend longer taking my boots off and on than the exam) said in my expert opinion nothing wrong ! We just couldnt believe what he was saying considering my symptoms are getting worse. My rheumatologist is also sending me for a MRI on my neck to rule out nerve entrapment ( 10th Dec), now noone I have met think I have this because of the presentation and position of my symptoms ( was referred to a physio for my neck and although she gave the most thorough of assesments when she tried physio on my neck its made my symptoms worse, so thats been put on hold till we know more of what im dealing with.
Went bk to my GP last week and he was very unhappy with what the neurologist said so he's referring me to see a different neurologist for a 2nd opinion which will be January 9th, was lucky because I got a cancellation. The last and very important thing i need to mention is my only child, a son Dean died from a childhood variant of MND 17 yrs ago aged 13 months, the variant he had was a very rare form, Dean was the youngest child/baby to have had this at that time in 1995/1996 ( Dean was diagnosed from a post mortom, and myself and my ex-husband got the results 5 months after he died ) Dean was born healthy and thrived till 8 months off age, and started having Bulbar symptoms after then, Dean was ill 1 month at home, and spent the last 4 months of his life in Paediatric Intensive Care, we actually turned off the life support with 3 drs permissions legally.
Now Im not saying that Ive got anything like Dean had, alhough i have similar symptoms because I know nothing yet, and of course Dean might have been a very tragic and sad single one off diagnosis.
Its just the not knowing what Im dealing with and understanding whats happening to my body. Its very frustrating the whole process which i realise lots of you understand completely this stressful process of seeing different Gp's, consultants and having lotsa different tests to rule things out, and getting nowhere.
Thankyou for your time and your patience in reading this, very much appreciated.
All the best to you all
Blossom
I hope u don't mind me posting. I'll explain simply I hope my story,
I'm 47 and live in the UK and started having main symptoms summer 2011, starting with some tingling in my left foot, slowly spreading to my lower left leg, my right foot, lower right leg, left hand/ lower arm and right lower arm/hand. Im under a rheumatologist and have various blood tests, examinations over this past yr. I had problems with dry eyes and mouth ( which i thought were causing some swallowing/choking issues, and have various medications to treat this, they thought it was Sjogrens syndrome but the bloods came up negative, ) Ive also had some stiffness in my muscles a stiff neck with no pain and inflamed hip joints which they think are menopause related, and will calm down after im out the other side of the menopause. ( I also have IBS which is mostly controlled by mdeication)
For the last 3-4 months the numbness has got so much worse in my left side, particually in left arm/hand and my grip is bad in my left hand, cant grip anything tightly so subsequently i drop sooo many things, also im always knocking my arm/hand on doorways, sinks, worktops, everything and anything coz i think i lift my arm to clear things and i dont so always got bruises. My left foot/leg is weaker now, so i tend to stumble n trip. So when I saw my rheumatologist In august seh referred me to have some Nerve Conduction Studies, which came bk normal, but the dr who did the tests was concerned enough abt my symptoms to ask my GP if he didnt mind sending me to see a neurologist, which he did on November 7th. This appt was a disaster, a horrible consultant, just rude, didnt listen, kept interrupting ( my husband came in with me ) gave me the quickest examination in the world ( spend longer taking my boots off and on than the exam) said in my expert opinion nothing wrong ! We just couldnt believe what he was saying considering my symptoms are getting worse. My rheumatologist is also sending me for a MRI on my neck to rule out nerve entrapment ( 10th Dec), now noone I have met think I have this because of the presentation and position of my symptoms ( was referred to a physio for my neck and although she gave the most thorough of assesments when she tried physio on my neck its made my symptoms worse, so thats been put on hold till we know more of what im dealing with.
Went bk to my GP last week and he was very unhappy with what the neurologist said so he's referring me to see a different neurologist for a 2nd opinion which will be January 9th, was lucky because I got a cancellation. The last and very important thing i need to mention is my only child, a son Dean died from a childhood variant of MND 17 yrs ago aged 13 months, the variant he had was a very rare form, Dean was the youngest child/baby to have had this at that time in 1995/1996 ( Dean was diagnosed from a post mortom, and myself and my ex-husband got the results 5 months after he died ) Dean was born healthy and thrived till 8 months off age, and started having Bulbar symptoms after then, Dean was ill 1 month at home, and spent the last 4 months of his life in Paediatric Intensive Care, we actually turned off the life support with 3 drs permissions legally.
Now Im not saying that Ive got anything like Dean had, alhough i have similar symptoms because I know nothing yet, and of course Dean might have been a very tragic and sad single one off diagnosis.
Its just the not knowing what Im dealing with and understanding whats happening to my body. Its very frustrating the whole process which i realise lots of you understand completely this stressful process of seeing different Gp's, consultants and having lotsa different tests to rule things out, and getting nowhere.
Thankyou for your time and your patience in reading this, very much appreciated.
All the best to you all
Blossom
