avv11
New member
- Joined
- Sep 22, 2010
- Messages
- 1
- Diagnosis
- 1/2008
- Country
- UK
- State
- East Sussex
- City
- Forest Row
Hi Every one
I was diagnosed in 2008 after realising that there was some thing not quite right with my left arm/hand not having any stengh, muscle wasting. I struggles to button up my shirts, not able to lift heavy objectives and hid it very well. It was frighten and i was becoming extremely tired. After picking up the corrage to see a Doctor I went for my first treatment 16th June 2008, 2 days of celabrating my 40th birthday.
I have now completed 2 years of treatment every 4 months having 18 bottles of IG. It has been a struggle, suffering very bad side effects, headaces and sickness. I have now managed to go from 7 days to 3 days after trying 2 different brands and having cortisone at the beging of the treeatment and one half way through and I no longer suffer the the side effects. My treatment last about 3 months and the forth month is a bit of a mare so it will be time to re think if i go to 4 times not quite there yet.
I have been researching MMN and to say the least there is a not a lot out there which is fustrating and have heard that over time the IG will not be effective, and that this is the best treatment. I will continue to search and if I find any info I will let the forum know.
One thing I will say where I have my treatment I cannot thank the hospital staff/nurses enough because they are the best and have helped me when it has been tough, and seeing some of the patients in the neurological ward, makes me think I am ok. At some point things will change but until then I keep going. My wife is one in a million and her suopport is brilliant and I am very lucky
This has been great to get this of my chest, if you come across this thank you for reading and if you want to get in contact and discuss compare please feel free.
take care Vic
Always remeber
life goes on and there are people worse off well thats how I look at it
I was diagnosed in 2008 after realising that there was some thing not quite right with my left arm/hand not having any stengh, muscle wasting. I struggles to button up my shirts, not able to lift heavy objectives and hid it very well. It was frighten and i was becoming extremely tired. After picking up the corrage to see a Doctor I went for my first treatment 16th June 2008, 2 days of celabrating my 40th birthday.
I have now completed 2 years of treatment every 4 months having 18 bottles of IG. It has been a struggle, suffering very bad side effects, headaces and sickness. I have now managed to go from 7 days to 3 days after trying 2 different brands and having cortisone at the beging of the treeatment and one half way through and I no longer suffer the the side effects. My treatment last about 3 months and the forth month is a bit of a mare so it will be time to re think if i go to 4 times not quite there yet.
I have been researching MMN and to say the least there is a not a lot out there which is fustrating and have heard that over time the IG will not be effective, and that this is the best treatment. I will continue to search and if I find any info I will let the forum know.
One thing I will say where I have my treatment I cannot thank the hospital staff/nurses enough because they are the best and have helped me when it has been tough, and seeing some of the patients in the neurological ward, makes me think I am ok. At some point things will change but until then I keep going. My wife is one in a million and her suopport is brilliant and I am very lucky
This has been great to get this of my chest, if you come across this thank you for reading and if you want to get in contact and discuss compare please feel free.
take care Vic
Always remeber
life goes on and there are people worse off well thats how I look at it