Aa
To all who answered my post : )
Thank you all for your answers I am pushing for answers every day but all of the input that I have had from you all has put me in a different direction. I do live in Michigan now and grew up here but just moved back from Ohio a year ago this past November. I lived in Ohio near the P.A. boarder for the past 11 years and moved home to hopefully get help as I had no health insurance until I came here. Unfortunately due to my deteriation so to speak.. my two young children are now living with their father and step mom.. It was a good decision for the boys of course because I have lost the ability to drive, walk, go to the movies, help w homework, keep on top of homework.. and on and on.. whatever is happening to me has crippled my entire life!! When custody changed hands with my x husband and I in total agreement.. I also had the medical I was getting through the state ripped from me ASAP.. so now we are starting disability papers, medicaid again, anything at all to get help for my ongoing medical care.. I cannot work at all at this time in any area.. walking has become alomost impossible for me over just this past month not to mention everything else... : ( thank you all for your time.. i am sorry for going on and on.. jsut needed to vent today.. hugs to everyone who suffers daily as I do.. it takes strong willed people to endure day after day after day..
@carrie235,
Thank you so very much for all of the important information that you have sent to me. I have not been on my med help pages at all for a few weeks now things have just fallen apart on my end. I am seeing my pcp tomorrow and we are going to discuss Lyme and hopefully I will get some input on it and he will just order the testing for it. I am sure he will he has been wonderful to me to say the least. Unfortunately tomorrow will be the last time I will be seeing any of my doctors here in Michigan. I have lost my apartment, my children, my life as I use to know it. My fiancee is in Ohio and that is were I am headed to now. My mother and other family are here in Michigan and have been a wonderful support and gotten me through much more than I can ever thank them for. I did see my optic neurologist last week for more loss of vision but he does not seem to think this is neurologist at all.. hmm heard that one way to many times.. by the way this is the first of my doctors that actually told me he just could not rule out MS. Its amazing the way all of these doctors work! They overbook the patients ( mom and I waited for almost 3 hours just to see him) and then they rush rush through your visit and say whatever they need to just to move on to the next. I was shocked to say the least and my mother was furious at the response we got from this doctor that day!! This entire past two years have just taken everything from me and what can this doc say.. well move on to the next.. its just not my area anymore.. I have no insurance anymore now that the debilitating things that have happened to me ended my two young children living with their father and step mother.
At least I know that they will be ok and have no regrets for making that decision with their father. I can no longer drive, walk at a good pace, read, see like normal people do and on bad days shake and struggle for my words. It just was not fair for my wonderful young men that they have become to have to sit by and become my caretaker. I miss them dearly there are no real words to explain that and never will be. Also now that I am moving back to Ohio where my sons and I moved from to just deal with life. There are charities there that were able to help me to a point before so I will rely on them again. I have also decided that I will do the very very best I can to go out and find any job that I can so that I can at least be able to afford to get to the half way point that my x has agreed to meet me at so that I can see my boys. There is so very much more to say but need to finish packing today I will be leaving on Tuesday for good back to Ohio. I dont ever want to give up, I have done this more then once in this past year and it ended me up in a psychiatric hospital for ten days. I will say though that without being put there I would most defanetly not be here to write to you today. It is amazing the meds they can give you to make you somewhat happy? and just beyond belief how easy it is for other doctors to just say hey, learn to deal here's life now. My fiancee also has medical problems and has medical insurance but we cannot just get married rite now. there are many factors to decide. He is a wonderful man and is beyond stressed about what we should do. I have more than one pr existing condition that is going to bury us financially so for now we will hold off on the wedding plans so that I can hopefully get whatever help I may get any other way that we can. Like I said, much more to talk about there.
Again, thank you so much for all of the information I will look into it for sure. I can only wish that Lyme is my reason and cause for the loss of my life... sad to wish for that ha.. well take care and the best goes out to you and yours.. Terrie
Thank you so very much for all of the important information that you have sent to me. I have not been on my med help pages at all for a few weeks now things have just fallen apart on my end. I am seeing my pcp tomorrow and we are going to discuss Lyme and hopefully I will get some input on it and he will just order the testing for it. I am sure he will he has been wonderful to me to say the least. Unfortunately tomorrow will be the last time I will be seeing any of my doctors here in Michigan. I have lost my apartment, my children, my life as I use to know it. My fiancee is in Ohio and that is were I am headed to now. My mother and other family are here in Michigan and have been a wonderful support and gotten me through much more than I can ever thank them for. I did see my optic neurologist last week for more loss of vision but he does not seem to think this is neurologist at all.. hmm heard that one way to many times.. by the way this is the first of my doctors that actually told me he just could not rule out MS. Its amazing the way all of these doctors work! They overbook the patients ( mom and I waited for almost 3 hours just to see him) and then they rush rush through your visit and say whatever they need to just to move on to the next. I was shocked to say the least and my mother was furious at the response we got from this doctor that day!! This entire past two years have just taken everything from me and what can this doc say.. well move on to the next.. its just not my area anymore.. I have no insurance anymore now that the debilitating things that have happened to me ended my two young children living with their father and step mother.
At least I know that they will be ok and have no regrets for making that decision with their father. I can no longer drive, walk at a good pace, read, see like normal people do and on bad days shake and struggle for my words. It just was not fair for my wonderful young men that they have become to have to sit by and become my caretaker. I miss them dearly there are no real words to explain that and never will be. Also now that I am moving back to Ohio where my sons and I moved from to just deal with life. There are charities there that were able to help me to a point before so I will rely on them again. I have also decided that I will do the very very best I can to go out and find any job that I can so that I can at least be able to afford to get to the half way point that my x has agreed to meet me at so that I can see my boys. There is so very much more to say but need to finish packing today I will be leaving on Tuesday for good back to Ohio. I dont ever want to give up, I have done this more then once in this past year and it ended me up in a psychiatric hospital for ten days. I will say though that without being put there I would most defanetly not be here to write to you today. It is amazing the meds they can give you to make you somewhat happy? and just beyond belief how easy it is for other doctors to just say hey, learn to deal here's life now. My fiancee also has medical problems and has medical insurance but we cannot just get married rite now. there are many factors to decide. He is a wonderful man and is beyond stressed about what we should do. I have more than one pr existing condition that is going to bury us financially so for now we will hold off on the wedding plans so that I can hopefully get whatever help I may get any other way that we can. Like I said, much more to talk about there.
Again, thank you so much for all of the information I will look into it for sure. I can only wish that Lyme is my reason and cause for the loss of my life... sad to wish for that ha.. well take care and the best goes out to you and yours.. Terrie
Hi Can't Sleep:
It's me, Carrie again. I just read your journal. I can totally understand your despair and depression. I felt that way for an entire year before I finally got my Dx of Lyme. I really hope that you are looking into getting tested for Lyme Disease. I at times during that last year honestly didn't want to go on. I was so scared, I literally couldn't deal with the day-to-day things and my poor family suffered so much because all I could do was cry and be depressed.
Go to:
Igenex.com
They will overnight you a kit. All you have to do is get your doctor to sign off on it and go get the bloodwork done. Note that not all docs know how to read the test results (mine didn't and told me it was negative before I finally got a hold of the test two months later). Anyway, just go to a regular family doctor who whoever you can to sign off on the test, but get tested asap. Lyme could certainly be causing your problems. My friends daughter had lyme and was literally bedridden for a year and in a wheel chair. She has been treated and is back to living life again and in college and walking like a normal person!!!
DON'T GIVE UP!!!!! Keep moving forward. Your are your own best health advocate!!! If I'd listened to my doc who told me my test was negative, I'd still be dealing with all my symptoms of numbness, vibrating, tingling, twitching, trembling hands, etc etc.
It will be around $900 or so for a complete test which includes looking for co-infections. Mortgage whatever you have to to get the test done. Don't bother getting tested through a regular lab. I did that and it came back negative.....
Anyway, I'll stop now.
Keep us updated.
It's me, Carrie again. I just read your journal. I can totally understand your despair and depression. I felt that way for an entire year before I finally got my Dx of Lyme. I really hope that you are looking into getting tested for Lyme Disease. I at times during that last year honestly didn't want to go on. I was so scared, I literally couldn't deal with the day-to-day things and my poor family suffered so much because all I could do was cry and be depressed.
Go to:
Igenex.com
They will overnight you a kit. All you have to do is get your doctor to sign off on it and go get the bloodwork done. Note that not all docs know how to read the test results (mine didn't and told me it was negative before I finally got a hold of the test two months later). Anyway, just go to a regular family doctor who whoever you can to sign off on the test, but get tested asap. Lyme could certainly be causing your problems. My friends daughter had lyme and was literally bedridden for a year and in a wheel chair. She has been treated and is back to living life again and in college and walking like a normal person!!!
DON'T GIVE UP!!!!! Keep moving forward. Your are your own best health advocate!!! If I'd listened to my doc who told me my test was negative, I'd still be dealing with all my symptoms of numbness, vibrating, tingling, twitching, trembling hands, etc etc.
It will be around $900 or so for a complete test which includes looking for co-infections. Mortgage whatever you have to to get the test done. Don't bother getting tested through a regular lab. I did that and it came back negative.....
Anyway, I'll stop now.
Keep us updated.
I see they starred out the email address. I'm going to try this again:
info(use the @ symbol)lymetap.com
Carrie
info(use the @ symbol)lymetap.com
Carrie
Hi Can't Sleep:
Just looking back at your other post, I see that you are not dx with lyme but have the lesions. As I said, I also have lesions, but not MS according to my doctors. I hope that you get tested for Lyme asap. I just went to a Lyme conference and they were handing out information for lyme testing to patients who demonstrate true financial need: I'm going to type out this information. I hope that you will email them and get tested ASAP.
for Eliibility requirements, instructions and an application, go to:
www.lymetap.com
or contact them at:
***@****
Lyme-TAP, P.O. Box 2238, McKinleyville, CA 95519
Please please keep us updated. Also, did any of your other tests indicated MS such as VEP, blood work, lumbar puncture.... I had so many tests, I can't remember them all but all mine came back negative. My first MRI still haunts me though.
Anyhow, hope this information is helpful.
Carrie
Just looking back at your other post, I see that you are not dx with lyme but have the lesions. As I said, I also have lesions, but not MS according to my doctors. I hope that you get tested for Lyme asap. I just went to a Lyme conference and they were handing out information for lyme testing to patients who demonstrate true financial need: I'm going to type out this information. I hope that you will email them and get tested ASAP.
for Eliibility requirements, instructions and an application, go to:
www.lymetap.com
or contact them at:
***@****
Lyme-TAP, P.O. Box 2238, McKinleyville, CA 95519
Please please keep us updated. Also, did any of your other tests indicated MS such as VEP, blood work, lumbar puncture.... I had so many tests, I can't remember them all but all mine came back negative. My first MRI still haunts me though.
Anyhow, hope this information is helpful.
Carrie
Oh my goodness...I'm so sorry to hear of your issues. I hope that you get the help that you need and some answers. I'm sorry, I don't remember if you have been dx with lyme or not?
I'm sorry you have had such a hard time. Do you have someone nearby to talk with? That can be a huge help.
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