prattstar
Active member
- Joined
- Sep 19, 2012
- Messages
- 50
- Reason
- PALS
- Diagnosis
- 09/2012
- Country
- UK
- State
- South Yorkshire
- City
- Barnsley UK
Hi folks
I am not sure if I am in right area or even the right forum. I am quite reluctant to post after what started as a rather unpleasant exchange on another forum about fasciculations.
I received a diagnosis of early onset benign motor neurons disease on September 10.
I live in the UK and our terminology seems to be a little different to the US.
I am just so emotional, confused and distraught with my diagnosis and am just trying to understand where I am, what I have and what it all means.
I have been flamed for using the benign diagnosed but that is what I was told by a specialist in MND, I didn't understand what this really means (other than evidence to support diagnosed but not currently active and the words not agressive and slowly moving were used). I have been started on Riluzole.
I have been having muscle cramps for well over 18 months, in calf, thighs, neck, biceps, pretty much any muscle, I can make cramp pretty easily.
I have also been having increased fasciculations pretty much anywhere and everywhere.
I have had MRI, CT and PET scans all pretty clear.
I have had two EMGs over 7 months that shows some abnormalities and some minor deterioration between the two) I don't have the reports but was informed about this by the Rheumatologist ).
I've had a mountain of blood tests and lumbar puncture with nothing to note.
I have full muscle strength in all muscle groups 5/5. I feel I have a little loss of dexterity but this is incredibly minor and I put it down to age and am not sure if I am imagining it.
I feel fatigued, my muscles have a dull ache from time to time.
I have lost over 20kgs in a short time but had a pretty stressful and active life, also now have a complete loss of appetite and have to force myself to eat.
My Neuro believes in her "heart of hearts" that her diagnosed is correct and said that the tests (?) support the diagnosed
I was told that whilst my diagnosis is currently benign, it is progressive and has no cure.
I am going to be monitored closely and the neuro has indicated if there are no further symptoms than she is happy to review the diagnosed.
Another EMG is being booked.
I am about to see my GP to request and discuss my neuro report and hopefully my EMGs so that I can ask questions and become informed.
As you would appreciate, this has really turned our world upside down, I have the most beautiful and caring wife of 3 years (friends for 20 years) and we have the most gorgeous 2 year old daughter.
I am really sorry about a long winded post, I am one confused and emotional individual trying to make sense of all of this stuff that makes very little sense to me at this moment.
Warm regards and best wishes
Ian
I am not sure if I am in right area or even the right forum. I am quite reluctant to post after what started as a rather unpleasant exchange on another forum about fasciculations.
I received a diagnosis of early onset benign motor neurons disease on September 10.
I live in the UK and our terminology seems to be a little different to the US.
I am just so emotional, confused and distraught with my diagnosis and am just trying to understand where I am, what I have and what it all means.
I have been flamed for using the benign diagnosed but that is what I was told by a specialist in MND, I didn't understand what this really means (other than evidence to support diagnosed but not currently active and the words not agressive and slowly moving were used). I have been started on Riluzole.
I have been having muscle cramps for well over 18 months, in calf, thighs, neck, biceps, pretty much any muscle, I can make cramp pretty easily.
I have also been having increased fasciculations pretty much anywhere and everywhere.
I have had MRI, CT and PET scans all pretty clear.
I have had two EMGs over 7 months that shows some abnormalities and some minor deterioration between the two) I don't have the reports but was informed about this by the Rheumatologist ).
I've had a mountain of blood tests and lumbar puncture with nothing to note.
I have full muscle strength in all muscle groups 5/5. I feel I have a little loss of dexterity but this is incredibly minor and I put it down to age and am not sure if I am imagining it.
I feel fatigued, my muscles have a dull ache from time to time.
I have lost over 20kgs in a short time but had a pretty stressful and active life, also now have a complete loss of appetite and have to force myself to eat.
My Neuro believes in her "heart of hearts" that her diagnosed is correct and said that the tests (?) support the diagnosed
I was told that whilst my diagnosis is currently benign, it is progressive and has no cure.
I am going to be monitored closely and the neuro has indicated if there are no further symptoms than she is happy to review the diagnosed.
Another EMG is being booked.
I am about to see my GP to request and discuss my neuro report and hopefully my EMGs so that I can ask questions and become informed.
As you would appreciate, this has really turned our world upside down, I have the most beautiful and caring wife of 3 years (friends for 20 years) and we have the most gorgeous 2 year old daughter.
I am really sorry about a long winded post, I am one confused and emotional individual trying to make sense of all of this stuff that makes very little sense to me at this moment.
Warm regards and best wishes
Ian