Cry Tears
02-11-2008, 10:00 PM
The only health "problems" I had was Fibromyalgia, irritable bowel disease later diagnosed as "Crohns" disease and 3 yearss of severe anemia from an intestintal baseball sized AVM (which is basically an anuerism)...
it bled for nearly 3 years where only had blood transfusion,
every other week...what a life! The performed every test imaginable and still couldn't find the cause of my anemia/bleeding till they opened me up a SECOND time for exploritory surgery, then retrieval of small pill camera that got stuck inside me.
But my Right after recieving my first Remicade infusion I noticed muscle weakness.
I was assured this was NOT a reaction to the Remicade as no one else reported such reaction...so I went thru with the second infusion 2 weeks.
After the second infusion the muscle weakness became much worse to where I could hardly walk. I was assured by Remicade makers AND my Gastro docl
I was diagnosed with Polymyositis (PM) a few years ago, but then was told it was NOT that.
Then the diagnosis was changed to Peripheral Neuropathy (PN)....
that is was just the PN, and NOT PM.
But lately I've had increased level of Neuropathy spreading all over my entire body with increased muscle weakness, even swallowing is a problem.
My Rhuematologist ordered more blood test and now results are in, somethi"Crohns" disease was very bad and I had intestinal pain so bad could hardly stand up.
So was thougth the Remicade would help my "Crohns" disease, but after the second infusion was clear this was causing my muscle weakness to where I couldn't hardly sit up in bed...then if things could get worse, they did and then things went terribly wrong then with Neuropathy and once again I'm being told it is Polymyositis....But need muscle biopsy's to confirm this.
I've had 2 EMG and NC test and they want this repeated again! Oh help!
On top of all this, I've been having somewhat crisis level of feeling very ill the last few weeks, with reaction to food or just eating.....
on top of some emotional "stuff" going on thats not getting any better...
so feels like I'm being hit from all around...
but this being rediagnosed with Polymyositis....oh help!
Am told to take more Prednisone, Steroids...I react differently than most people...and just a few milligrams causes problems.
Because of increasing muscle weakness I've been having problems with swallowing and must stick to softer type foods.
Recently I've had my entire body feel as if on fire from Peripheral Neuropathy and increased muscle weakness, twitching, pain,
loss of balance and this swallowing issue is bit scarey for me.
This weekend I had an "event" where I went into shock after eating and then began vomiting, then fainted....
it started just moments after eating...
was like I had an allergic reaction to what I'd eaten and I began vomiting,
then got cold and clammy and sweat pouring off my face while my hands and feet were ice cold.
My lips, hands and feet were blue and my face was very pale.
My husband wanted to take me to the ER but once I threw up all my food and then fainting I felt much better and came out of it quickly...
so don't know what went wrong,
or if was a reaction to the food I'd eaten...
but I'd eaten same food earlier this week...
so don't think was allergic reaction to what I'd eaten.
I'm wondering if this is part of the PM?...but not sure.
So far I don't have the muscle wasting that goes along with PM,
but my Rhuemy says some forms of PolyMyositis can hit certain organs.
Does anyone else have Polymyositis, or am I the only one?
Most of my problems began rigth after recienving Remicade infusions given to me to treat Crohns disease...
turned out I didn't have Crohns, was a wheat/Gluten allergy! Ug!
I started a gluten & wheat free diet last April...
all my Crohns and bowel symptoms cleared up as long as I stayed away from such.
That morning I'd eaten pancakes,
but was a Gluten/Wheat free pancake mix (Pamela's Products)
I've had same exact pancakes earlier this week with no such reaction,
so I don't think it was the food I was reacting to.
I felt just fine before eating and began to feel very ill
the moment I finished the last bite.
I didn't have a stomach ache...just vomiting and feeling cold, clammy and sweating profusely...
my lips, hands and feet were blue, ice cold and my face was very pale.
I fainted after I'd fisnished vomiting....
was right after getting cold, clammy feeling is when I fainted.
Then within half hour I was just fine and felt "OK" the rest of the day.
This muscle weakness and Neuropathy all began right after recieving
Remicade infusions to treat my "Crohns" disease...
was really the wheat/gluten allergy.
Took 25+ years to figure this out!
Thanks for any input you can give.
CryTears
it bled for nearly 3 years where only had blood transfusion,
every other week...what a life! The performed every test imaginable and still couldn't find the cause of my anemia/bleeding till they opened me up a SECOND time for exploritory surgery, then retrieval of small pill camera that got stuck inside me.
But my Right after recieving my first Remicade infusion I noticed muscle weakness.
I was assured this was NOT a reaction to the Remicade as no one else reported such reaction...so I went thru with the second infusion 2 weeks.
After the second infusion the muscle weakness became much worse to where I could hardly walk. I was assured by Remicade makers AND my Gastro docl
I was diagnosed with Polymyositis (PM) a few years ago, but then was told it was NOT that.
Then the diagnosis was changed to Peripheral Neuropathy (PN)....
that is was just the PN, and NOT PM.
But lately I've had increased level of Neuropathy spreading all over my entire body with increased muscle weakness, even swallowing is a problem.
My Rhuematologist ordered more blood test and now results are in, somethi"Crohns" disease was very bad and I had intestinal pain so bad could hardly stand up.
So was thougth the Remicade would help my "Crohns" disease, but after the second infusion was clear this was causing my muscle weakness to where I couldn't hardly sit up in bed...then if things could get worse, they did and then things went terribly wrong then with Neuropathy and once again I'm being told it is Polymyositis....But need muscle biopsy's to confirm this.
I've had 2 EMG and NC test and they want this repeated again! Oh help!
On top of all this, I've been having somewhat crisis level of feeling very ill the last few weeks, with reaction to food or just eating.....
on top of some emotional "stuff" going on thats not getting any better...
so feels like I'm being hit from all around...
but this being rediagnosed with Polymyositis....oh help!
Am told to take more Prednisone, Steroids...I react differently than most people...and just a few milligrams causes problems.
Because of increasing muscle weakness I've been having problems with swallowing and must stick to softer type foods.
Recently I've had my entire body feel as if on fire from Peripheral Neuropathy and increased muscle weakness, twitching, pain,
loss of balance and this swallowing issue is bit scarey for me.
This weekend I had an "event" where I went into shock after eating and then began vomiting, then fainted....
it started just moments after eating...
was like I had an allergic reaction to what I'd eaten and I began vomiting,
then got cold and clammy and sweat pouring off my face while my hands and feet were ice cold.
My lips, hands and feet were blue and my face was very pale.
My husband wanted to take me to the ER but once I threw up all my food and then fainting I felt much better and came out of it quickly...
so don't know what went wrong,
or if was a reaction to the food I'd eaten...
but I'd eaten same food earlier this week...
so don't think was allergic reaction to what I'd eaten.
I'm wondering if this is part of the PM?...but not sure.
So far I don't have the muscle wasting that goes along with PM,
but my Rhuemy says some forms of PolyMyositis can hit certain organs.
Does anyone else have Polymyositis, or am I the only one?
Most of my problems began rigth after recienving Remicade infusions given to me to treat Crohns disease...
turned out I didn't have Crohns, was a wheat/Gluten allergy! Ug!
I started a gluten & wheat free diet last April...
all my Crohns and bowel symptoms cleared up as long as I stayed away from such.
That morning I'd eaten pancakes,
but was a Gluten/Wheat free pancake mix (Pamela's Products)
I've had same exact pancakes earlier this week with no such reaction,
so I don't think it was the food I was reacting to.
I felt just fine before eating and began to feel very ill
the moment I finished the last bite.
I didn't have a stomach ache...just vomiting and feeling cold, clammy and sweating profusely...
my lips, hands and feet were blue, ice cold and my face was very pale.
I fainted after I'd fisnished vomiting....
was right after getting cold, clammy feeling is when I fainted.
Then within half hour I was just fine and felt "OK" the rest of the day.
This muscle weakness and Neuropathy all began right after recieving
Remicade infusions to treat my "Crohns" disease...
was really the wheat/gluten allergy.
Took 25+ years to figure this out!
Thanks for any input you can give.
CryTears