Cry Tears
07-16-2007, 04:43 PM
All my neurological problems began just after I had my second IV infusion of Remicade.
It started with severe muscle weakness...where I felt as if I was walking thru a deep creek against the current.
Then I began having having fatigue, then muscle twitching began first in my feet, legs, thighs then in my arms and a few fistualations in my trunk.
It felt like the muscle twitching worked its way up my body.
Was diagnosed as BMFS...Benign muscle fistulation sydrome...supposidly non problematic...oh yeah? Maybe for them its not a problem, but when its YOUR body doing this 24/7 sure makes life miserable on top of everything else.
Then a few months later I began having feet burning/tingling, then began in my hands, then above my elbos, knees involvement in the burning as well.
This was diagnosed as Peripheral Neuropathy (PN) by EMG and NC test showed I had moderate level, classic sock glove pattern.
The muscle weakness was worsening when I began having balance issues.
Forced to use a Rolla Walker just to get across the room.
In the middle of all this I had an intestinal AVM (is sorta like an anuerism) that caused severe anemia (5.1 hgb)...that bled 2+ years, till they finally found it by "accident" during surgery to retreive a pill camera stuck in lower small intestines because of Crohns disease.
After surgery all these symptoms only got worse and I was so fatigued could hardly get out of bed....was bedridden 100% for half year then discovered BT, read about B12 deficinecy....within months began to feel much better and PN began to ease up.
The B12 has been a godsend for me...but I still continue having these neuro problems which first began with Remicade infusions.
I was told no such complaints ever filed with makers of Remicade back when I first complained...and now I see I'm not the only one...but they've never answered my complaints the doctor filed for me. Intersting isn't it?!?!
Has anyone else had this reaction to Remicade infusions?
I wonder if I should contact an attorney...maybe they will at least pay for my doctors visits! Ha! NOT! I'd be lucky if they even admit others had neuro problems.
I can't help but wonder if this medication is the cause of my neuro problems.
Its been a nightmare thats been going on for years...wishing I'd wake up out of it and feel "whole" again.
I'm sure they'd try and shut me up if the makers of this med Remicade saw this....would be interesting!
Maybe I should build a web site asking if others had the same, then collectively get the company's attention!
Please let me know if you've had any such experience or if you've heard of anyone having this type "reaction/symptoms" to Remicade.
Blessings, cheryl
It started with severe muscle weakness...where I felt as if I was walking thru a deep creek against the current.
Then I began having having fatigue, then muscle twitching began first in my feet, legs, thighs then in my arms and a few fistualations in my trunk.
It felt like the muscle twitching worked its way up my body.
Was diagnosed as BMFS...Benign muscle fistulation sydrome...supposidly non problematic...oh yeah? Maybe for them its not a problem, but when its YOUR body doing this 24/7 sure makes life miserable on top of everything else.
Then a few months later I began having feet burning/tingling, then began in my hands, then above my elbos, knees involvement in the burning as well.
This was diagnosed as Peripheral Neuropathy (PN) by EMG and NC test showed I had moderate level, classic sock glove pattern.
The muscle weakness was worsening when I began having balance issues.
Forced to use a Rolla Walker just to get across the room.
In the middle of all this I had an intestinal AVM (is sorta like an anuerism) that caused severe anemia (5.1 hgb)...that bled 2+ years, till they finally found it by "accident" during surgery to retreive a pill camera stuck in lower small intestines because of Crohns disease.
After surgery all these symptoms only got worse and I was so fatigued could hardly get out of bed....was bedridden 100% for half year then discovered BT, read about B12 deficinecy....within months began to feel much better and PN began to ease up.
The B12 has been a godsend for me...but I still continue having these neuro problems which first began with Remicade infusions.
I was told no such complaints ever filed with makers of Remicade back when I first complained...and now I see I'm not the only one...but they've never answered my complaints the doctor filed for me. Intersting isn't it?!?!
Has anyone else had this reaction to Remicade infusions?
I wonder if I should contact an attorney...maybe they will at least pay for my doctors visits! Ha! NOT! I'd be lucky if they even admit others had neuro problems.
I can't help but wonder if this medication is the cause of my neuro problems.
Its been a nightmare thats been going on for years...wishing I'd wake up out of it and feel "whole" again.
I'm sure they'd try and shut me up if the makers of this med Remicade saw this....would be interesting!
Maybe I should build a web site asking if others had the same, then collectively get the company's attention!
Please let me know if you've had any such experience or if you've heard of anyone having this type "reaction/symptoms" to Remicade.
Blessings, cheryl