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Re: Looks like I going to have to have surgery (SCARED
Hey Jodie -- I realized you asked if there was any possible way to check the steroids prior to the surgery. I do not have access to a true "Environmental Illness" doc so I do not have a way to to do any skin testing of substances.
To be frank, that reaction from the Prednisone was such that I would not be willing to actually ingest some of it as it was so horrific. Is there some way you know of to do a test safely when there is not an EI doc around????
I am so sorry that I seem to be missing things in the thread and have to go back to them. I am having a very difficult time right now with many health issues.
Thanks for being understanding!
I did select to join the Green Canaries group, but may have issues with it. For some reason all past groups I have tried to join that are Yahoo based I was never able to post and get responses from. I don't know what I am doing wrong, but I gave up months ago on them. I will try again, but I guess my lack of social media savvy is a problem with the yahoo groups.
have a wonderful day!
Judi
To be frank, that reaction from the Prednisone was such that I would not be willing to actually ingest some of it as it was so horrific. Is there some way you know of to do a test safely when there is not an EI doc around????
I am so sorry that I seem to be missing things in the thread and have to go back to them. I am having a very difficult time right now with many health issues.
Thanks for being understanding!
I did select to join the Green Canaries group, but may have issues with it. For some reason all past groups I have tried to join that are Yahoo based I was never able to post and get responses from. I don't know what I am doing wrong, but I gave up months ago on them. I will try again, but I guess my lack of social media savvy is a problem with the yahoo groups.
have a wonderful day!
Judi
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Re: Looks like I going to have to have surgery (SCARED
Is there some way you know of to do a test safely when there is not an EI doc around????<<
I don't know girl, sorry. I wouldn't have taken it myself unless I was in a hosp situation with an understanding specialist.. :/
I don't know girl, sorry. I wouldn't have taken it myself unless I was in a hosp situation with an understanding specialist.. :/
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Re: Looks like I going to have to have surgery (SCARED
Jodie,
Hey there! I have been having major pc issues (hard drive crashed and then well we are on our 3rd new pc due to hard drive issues with the new ones!!) and out of commission will ills for a bit.
I have finally however done more research on trying to figure out the safest way to try to get this surgery done and wanted to mention that from the findings I have come across and recommendations from members of the CIIN and Environmental Health Center in Dallas that steroids should be avoided prior to surgeries when you have MCS (just mentioning it so you are aware and can do more research for yourself if it comes up in the future).
I have run into a brick wall and really don't know any way around it. Turns out in my state in America there are laws that will prevent me from being able to get preservative free meds sent here from elsewhere or compounded for me within the state. I am so upset. Also, I thought I had finally gotten one of my regular doctors tosort of understand this condition better too and was so excited until I went back asking for expertise about how to find safe meds for me and comments were made letting me know that she still did not even begin to get it and actually I mgiht have lost some ground with her. (She probably found one of the many sites out there that state this is all psychosomatic in nature and NOT REAL!! - she made some comment about it depends WHERE you get your information from. She also really fought me on why gas anaesthesia would be bad for me.)
To be honest, I am ready to give up. Did you or anyone you know of do okay with surgery NOT using preservative free meds? How in the heck am I going to be able to do this safely when I get even get a doctor that has known me for years and saw this get so bad doesn't believe in it and the surgeon and other docs don't even have a clue about it???
I don't know what to do and it seems to be getting bigger and I have to do something soon, but I am frozen in fear. I am so sick of callous statements and "that look" given when telling me I don't have a choice but to do it (and just get over your mental phobia and get it done basically.)
I am in a state right now, so sorry in advance for my rants, but I could handle chatting with someone who really understands what is at stake here. I am really being told to avoid gas in the OR. Barring trying to find a doctor out of state and creatiing a whole host of other problems -- I don't see a way to accomplish this even remotely safely.
Thanks for listening and please do let me know if you used regular meds or not.
Take Care!
Judi
Hey there! I have been having major pc issues (hard drive crashed and then well we are on our 3rd new pc due to hard drive issues with the new ones!!) and out of commission will ills for a bit.
I have finally however done more research on trying to figure out the safest way to try to get this surgery done and wanted to mention that from the findings I have come across and recommendations from members of the CIIN and Environmental Health Center in Dallas that steroids should be avoided prior to surgeries when you have MCS (just mentioning it so you are aware and can do more research for yourself if it comes up in the future).
I have run into a brick wall and really don't know any way around it. Turns out in my state in America there are laws that will prevent me from being able to get preservative free meds sent here from elsewhere or compounded for me within the state. I am so upset. Also, I thought I had finally gotten one of my regular doctors tosort of understand this condition better too and was so excited until I went back asking for expertise about how to find safe meds for me and comments were made letting me know that she still did not even begin to get it and actually I mgiht have lost some ground with her. (She probably found one of the many sites out there that state this is all psychosomatic in nature and NOT REAL!! - she made some comment about it depends WHERE you get your information from. She also really fought me on why gas anaesthesia would be bad for me.)
To be honest, I am ready to give up. Did you or anyone you know of do okay with surgery NOT using preservative free meds? How in the heck am I going to be able to do this safely when I get even get a doctor that has known me for years and saw this get so bad doesn't believe in it and the surgeon and other docs don't even have a clue about it???
I don't know what to do and it seems to be getting bigger and I have to do something soon, but I am frozen in fear. I am so sick of callous statements and "that look" given when telling me I don't have a choice but to do it (and just get over your mental phobia and get it done basically.)
I am in a state right now, so sorry in advance for my rants, but I could handle chatting with someone who really understands what is at stake here. I am really being told to avoid gas in the OR. Barring trying to find a doctor out of state and creatiing a whole host of other problems -- I don't see a way to accomplish this even remotely safely.
Thanks for listening and please do let me know if you used regular meds or not.
Take Care!
Judi
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Re: Looks like I going to have to have surgery (SCARED
Judi, so sorry to hear you've going thru this hell, I was hoping you'd be back here telling us it was all over & fine.
I'm curious about these docs opinions on steroids, I remember reading on here with one individual their general symptoms actually improved with steroids, can't find the message now, but found one from Maff who took DHEA which is a neurosteroid & gave a huge boost to his recovery from MCS
www.ei-resource.org/forum/multiple-chemi...698-mcs-update/#2700
but from what I recall you've tried prednisone & was really sick on it, so that one's out. I have no idea if the drugs used for my surgery were preserative free, it didn't occur to me to ask, I assumed it wouldn't be possible with so many different drugs used...& wasn't mentioned in the list of drugs that came back from the anaesthesist.
I think Maff might be the only person here with enough expertise to even have an idea what to do - I'd send him a private message with link to your post here (click on his profile, there should be an option to send a message there). If you have any probs with that let me know..
x Jodie
I'm curious about these docs opinions on steroids, I remember reading on here with one individual their general symptoms actually improved with steroids, can't find the message now, but found one from Maff who took DHEA which is a neurosteroid & gave a huge boost to his recovery from MCS
www.ei-resource.org/forum/multiple-chemi...698-mcs-update/#2700
but from what I recall you've tried prednisone & was really sick on it, so that one's out. I have no idea if the drugs used for my surgery were preserative free, it didn't occur to me to ask, I assumed it wouldn't be possible with so many different drugs used...& wasn't mentioned in the list of drugs that came back from the anaesthesist.
I think Maff might be the only person here with enough expertise to even have an idea what to do - I'd send him a private message with link to your post here (click on his profile, there should be an option to send a message there). If you have any probs with that let me know..
x Jodie
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Re: Looks like I going to have to have surgery (SCARED
A couple more ideas - email MCS America which is a big resource site if you're in the US, also I can copy your message to Green Canary health.dir.groups.yahoo.com/group/GreenCanary/ which is a yahoo support group, also mostly US based , some peeps have probs getting in there & if you're not a member it'll take a few days anyway. Let me know..
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Re: Looks like I going to have to have surgery (SCARED
Jodie,
Thanks so much for the reply! You know as far as the steroids go, I am beginning to think that each and every one of us are so different as far as what we react badly to and it all probably depends on so many factors in our own chemical makeup and Genetic structure et. al. Also, aren't there many types of steroids (i.e, you mention Neurosteroid and I know I have heard of other types that I don't know spellings for so I am not even going to try here)? Maybe some are safe and some are not. The Environmental Health Center in Dallas over here is probably the most well known EI doc and facility in America (at least that I have heard of) and there are not many. The Chemnical Injury Illness Network said the same thing about steroids and so does a book I purchased on the subject -- but who knows??!!
I hate to say this but my experience has been that at least some involved with this illness are more about making money than really caring about the people suffering so greatly with it. (JUST MY OPINION and experience here, but that is how I am seeing it with some of these places.)
I do get blocks and epidurals with some steroids in them and do okay with them most of the time, but CANNOT take Prednisone or steroids in that family FOR SURE.
Bottom line is this condition is so horrific and it is never going to be simple to deal with because of each one of our varying factors (we are in the same boat and so alike and yet so different at the same time -- hope you understand what I am getting at as I might be messing up the delivery.) I don't think it will EVER get the acceptance it deserves. Of course, when I was young and really struggling with the Fibromyalgia (even years before getting the actual diagnosis), it was the same way. I was made to feel like I was crazy and it was all in my head. But, with this condition, the world makes so much money off the sale of unsafe chemicals that I really don't see it winning over - at least in our lifetimes. I like to hope that in the far future it will be. (And boy do I HOPE that I am wrong on this one.)
It definitely reassures me to know that you did not have preservative free drugs. Did you have any problems getting them to NOT use GAS on you?
Thanks also for the idea of chatting with Maff and explaining how to do that as I would not have known. I will look into the other site also. You are such a wealth of information! I wish I was even partly as knowledgeable as you are.
By the way Jodie, I just wanted to tell you that it is wonderful what you are doing out here on this site. I look and see so many posts by you and I hope you realize what a positive difference you are making in all of our lives here. Thank you from the bottom of my heart!
Judi
Thanks so much for the reply! You know as far as the steroids go, I am beginning to think that each and every one of us are so different as far as what we react badly to and it all probably depends on so many factors in our own chemical makeup and Genetic structure et. al. Also, aren't there many types of steroids (i.e, you mention Neurosteroid and I know I have heard of other types that I don't know spellings for so I am not even going to try here)? Maybe some are safe and some are not. The Environmental Health Center in Dallas over here is probably the most well known EI doc and facility in America (at least that I have heard of) and there are not many. The Chemnical Injury Illness Network said the same thing about steroids and so does a book I purchased on the subject -- but who knows??!!
I hate to say this but my experience has been that at least some involved with this illness are more about making money than really caring about the people suffering so greatly with it. (JUST MY OPINION and experience here, but that is how I am seeing it with some of these places.)
I do get blocks and epidurals with some steroids in them and do okay with them most of the time, but CANNOT take Prednisone or steroids in that family FOR SURE.
Bottom line is this condition is so horrific and it is never going to be simple to deal with because of each one of our varying factors (we are in the same boat and so alike and yet so different at the same time -- hope you understand what I am getting at as I might be messing up the delivery.) I don't think it will EVER get the acceptance it deserves. Of course, when I was young and really struggling with the Fibromyalgia (even years before getting the actual diagnosis), it was the same way. I was made to feel like I was crazy and it was all in my head. But, with this condition, the world makes so much money off the sale of unsafe chemicals that I really don't see it winning over - at least in our lifetimes. I like to hope that in the far future it will be. (And boy do I HOPE that I am wrong on this one.)
It definitely reassures me to know that you did not have preservative free drugs. Did you have any problems getting them to NOT use GAS on you?
Thanks also for the idea of chatting with Maff and explaining how to do that as I would not have known. I will look into the other site also. You are such a wealth of information! I wish I was even partly as knowledgeable as you are.
By the way Jodie, I just wanted to tell you that it is wonderful what you are doing out here on this site. I look and see so many posts by you and I hope you realize what a positive difference you are making in all of our lives here. Thank you from the bottom of my heart!
Judi
