sorry...lots of typos.....here is a better version
found a new MS site...it led me to many answers to some demons i've been dealing with. been fighting myself all day about it. here is the post i wrote finally that my docs will all get:
ok. i am new. i am 39 yrs old. i have rheumatoid arthritis,fibromyalgia, kidney disease, insomnia, and debilitating migraines. during a migraine they found thru an mri and ct scan an active demyelinating lesion on C4 and C5 and a calcification in the left temporiam of my brain. they diagnosed me at the hospital with active progressive ms.
my family doc and rheumatologist have been so very supportive. i went to one of the two local neurologists that treat ms. he was not nice to me....which is fine as long as he knows his stuff and treats the problem. BUT....i'm a scared, relatively young , and anxious about all this and worried person at this point. to say i was an active, physical person is an understatement. at the point i went to see him....i was very...and i am very....depressed. i feel like i have lost almost all of my mobility.
i have two kids i loved playing with...both teenagers. i was a speed skater...i was captain of the hard knox roller girls team the black bettys and one of the founders of my local/national roller derby league. i kayaked, canoed, fished, hiked, exercised, rode a bicycle, walked, and most important to me...i was a nurse which i wanted to be since i was little. i can no longer do any of that. in fact, i cant walk from one room to the next without losing my breath and using a cane. i loved loved loved to read. now if i read too long, everything gets blurry and i get a horrible headache.
i do rituxin chemo every 6 mths and i inject myself with 20 mg of methotrexate every sat. i have lost lots of weight. in jan 2011 i weighed 198. today i weigh 140. i had weight loss surgery yrs ago so i have approximately 20 pounds per my doc of extra skin. i am losing my hair and it is no longer curly. i have lost lots of friends. the arthritis has cause my hands, feet,hips and wrists and fingers to look deformed. they hurt terribly. i never sleep right. work was totally cold about it...which i understand....they need people that can do the job. if i over-use my hands and feet...they draw up...sort of like a seizure would look.
my docs have all tried to help except my neuro. he has really made me feel terrible. i am admittedly on a lot of meds....nothing fun by the way....things like stomach meds, allergy meds, i do take an ansaid and mobic and something for nausea along with my chemo and night time meds that help me sleep. at my first visit after i gave the nurse my med list, she left the room. she returned with a kleenex box. on the kleenex box was a sticky note that said " elvis has entered the building." i took a moment and thought...well maybe that is not for me...maybe it was a joke between nurses. but no. i feel now it was directly aimed at me. i even mentioned it. as soon as the doc saw it....my first visit was short, clipped, and to the point. he said...i'll do a spinal tap but thats not definative and we can test you the old way to diagnose ms. i said ok. he said i have looked at your reports. maybe this is all just because you are on too many meds. hmmmm, i thought... i was on NO ms meds. yes...i take lots of vitamins because of my weight loss surgery and yes i have tramadol and mobic for migraines but i am careful not to abuse my meds. as a nurse i felt i was being unfairly misjudged.
i noticed after i left the room and as i was waiting to make my follow up and schedule my tests, the nurse retreived the kleenex box with the sticky note about elvis, wadded it up, and threw it away while looking at me. so....i had the spinal tap. it was only one point off...so he said it was negative. he said i might have had refractory migraines.....i was not having those. they tore my epidural space and i had to have a blood patch. that took 7 days to get and i had to be taken by ambulance for the worst head pain of my life in the middle of all the spinal testing. he said my eyesight seemed ok. i went to a seperate eye doc during that time.
in 6 months i had gotten a whole point worse after no change for 5 yrs in my eyes and i developed astigmatism in both eyes. the neuro said it was just part of aging...which may be true although i think it was highly unlikely. i have always worked hard. i grew up on a farm and i knew not to complain. i worked long, hard, until it's done and i help my co-workers. i now cant move away from a desk and i can only answer phones. now even that is hard. i have a level of anxiety and guilt i have never had before. i feel 100% guilt that i cant remember things, i cant see the computer sometimes, i complain and whine and i have never done that in the past....i feel guilty that my young husband is stuck taking care of me. i feel guilty my kids dont have the mom they used to have. i used to dance. any time any place i danced, sang, was active. if i get up for more than an hour a day...actively...its a superhuman feat for me. i feel such guilt for that.
i feel ashamed that i cant even take a bag of trash to the curb for trash pick up. i feel guilty i cant keep my house clean. i feel guilty because i have to use a can to get into a store and then if they dont have a wheelchair, i have to go back to the car and my family has to shop. to make an omelet...i have to sit in a chair. i feel guilty that we are totally broke and i am a newlywed....we cant afford to do a real wedding, we cant go on a trip, we cant keep groceries because i have no income while i am on medical leave. we had to take on a renter and we are now really in debt and in a huge bind financially. i filed for disability while i am on leave from work during the rituxin chemo. i feel really guilty about that.
now....what i am getting to is what is making me feel the worst. this neurologist is so hateful. i feel like he judged me immediately from a sticky note written by a nurse that never even talked to me. the terrible thing....i work for this company. i am ashamed to be affiliated with them. i dont want to be associated with an organization that treats people that way. my office and their office is owned by the same company. i started noticing the other docs and nurses talking about patients that were on less meds than i am and making it seem like they were basically weak minded people who whine and cant take pain. that is soooooo not true.
finally...i went to see my family doc...who is an angel truelly sent to take care of me. he has been a rock. he and my rheumatologist have unbeknownst to them...gotten me through this. he showed me a recent letter from the neurologist. my mother and husband went to my last visit with me. he said to us all...for insurance to cover meds and treatment for MS...you must have 4 or more lesions. he said...you have the one on your spine and the spot in your brain. so i said...what does this mean? do you think i have ms or not. he said. i cant call it full blown MS but it is probable ms. everything points that way. there is no definitive test that says yes or no. i said but in your opinion it looks like i have developed the signs and symptoms and we are calling it probable MS....but you wont treat it until it gets worse. he CHUCKLED....and said well yes i guess thats one way to put it. hmmm.
i went to see my rheumatologist. i told her and my family doc everything he said including the fact that he said when my hands and feet draw up painfully for 30 minutes or so at a time with no warning....its because i was breathing wrong. yeah....breathing wrong???? i took a video of it. i havent shown him yet. i dont know if i'm seeing him again. i tried to make some chicken salad. i loved to cook. i pulled a chicken breast apart. it was too much for my hands and they drew up. it is very painful and can last from 5 to 30 minutes. my daughter video taped it on my phone. i spoke calmly about it while it was happening, i breathed normally, i explained what was happening, why it was happening and i spoke about the fact that i was breathing and speaking very normally and staying calm.
i also went to see a urologist. i told her about the "probable" MS. she did several tests because i have malformed kidneys from birth anyway. my new symptom though was the fact that i was urinating on myself, in the bed, and i had defecated 3 times on myself. this has been humiliating. she felt that the "probable" MS is weakening my pelvic wall and also make me sexually disfunctional.
this week i got letters. i am supposed to see a doctor for state disability next month to go over the probable ms symptoms. my family docotr told me some things yesterday. he said i am in very poor health right now. he said he can see me getting progressively worse. i told him everything the neurologist did and said. he then showed me the recent letter he got from that neurologist. he told my doctor i had been evaluated i it was not likely ... NOT LIKELY...MS. that is a totally different diagnosis than he gave me the three times i have asked his opinion. each time the neuro was asked....in front of my mother, daughter, and husband...he said probable.
my family doctor said this will be a problem for me. he said not likely and probable are two totally different diagnosis. he ( my family doc) does not want me to see this neuro again. my rheumatologist does not want me to see the other MS specialist. i am at square one with this and my state doc appt is july 14th and july 17th. from my symptoms and family history....i know that i have probable MS.
when do doctors lose their caring and become so cold????? i fall a lot, i have no balance, i see double a lot, i have terrible headaches, i have pain in my spine where the supposed lesion is exposed. he was supposed to do a follow up MRI 3 mths after my first rituxin. it has now been a year. how can he professionally say it's unlikely and not probable with no follow up? i have seen him i think...5 times. he comes in ...says little rude comments, makes rude faces, has never touched me, tells me yeah you have the lesion and spot but they arent huge, and tells me to come back in a few months. if i am wrong and misjudging him....i apologize. i think he has just made me feel worse, he has made me feel crazy, he has made me feel guilt i shouldnt feel,and i think he will hinder any help i may get from the disability system.
i dont know why i wrote all that.... i think i just needed to get it out. i am not an abuser of my meds or the system. i never wanted to give up nursing, reading, hiking, skating...... i LOVED my work. i LOVED my life. what i feel is guilt and shame for having to ask for help. i feel that this man needs to re-evaluate why he is a doctor. he has made me feel lower than low. i'm not going to let him do that anymore.
i found this site today and it gave me a tremendous amount of hope and relief. i'm not crazy. i'm not alone. i wont allow him to poison my mind with elvis comments and misinformation to my other docs. i'm finding a new neuro. i will feel better. i refuse to dread going to his office to be told...wellllllll....lets let your rheumatologist do the chemo and if it works great, and if you develop more lesions then i'll see what i can do. i dont want more lesions. i want someone that cares and wants to stop the lesions. i'm ready for answers instead if snide comments. thanks to everyone here that posted and helped me understand about the probable ms thing.
i am going to see my daughters neuro. my family doc actually recommended her. he adjusted some meds and i feel a little better. i am still very nauseated and i throw up a lot but we are working on that as well. i'm so glad i saw my doc the other day, i am so glad he showed me what the neuro had said, and i am so glad that i have decided to surround myself with a team that wants to help me and a team that wont judge me or call me names or lie to me about what he will say to my other docs. i wont say his name....but i will send him a copy of this.....he needs to treat people like the sick, hurting, trusting people they are and not snap judge or treat them as the next paycheck he will receive.
i want help. i want to not feel guilty. i want to be in control of my health and im not. its frustrating. i will get some part of my life back. i promise that to me. i pray God helps me and has put me on the path to this information i can use. thanks for listening
i guess i didnt really have a question....i just needed to get some things out. thanks for listening.
**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**
found a new MS site...it led me to many answers to some demons i've been dealing with. been fighting myself all day about it. here is the post i wrote finally that my docs will all get:
ok. i am new. i am 39 yrs old. i have rheumatoid arthritis,fibromyalgia, kidney disease, insomnia, and debilitating migraines. during a migraine they found thru an mri and ct scan an active demyelinating lesion on C4 and C5 and a calcification in the left temporiam of my brain. they diagnosed me at the hospital with active progressive ms.
my family doc and rheumatologist have been so very supportive. i went to one of the two local neurologists that treat ms. he was not nice to me....which is fine as long as he knows his stuff and treats the problem. BUT....i'm a scared, relatively young , and anxious about all this and worried person at this point. to say i was an active, physical person is an understatement. at the point i went to see him....i was very...and i am very....depressed. i feel like i have lost almost all of my mobility.
i have two kids i loved playing with...both teenagers. i was a speed skater...i was captain of the hard knox roller girls team the black bettys and one of the founders of my local/national roller derby league. i kayaked, canoed, fished, hiked, exercised, rode a bicycle, walked, and most important to me...i was a nurse which i wanted to be since i was little. i can no longer do any of that. in fact, i cant walk from one room to the next without losing my breath and using a cane. i loved loved loved to read. now if i read too long, everything gets blurry and i get a horrible headache.
i do rituxin chemo every 6 mths and i inject myself with 20 mg of methotrexate every sat. i have lost lots of weight. in jan 2011 i weighed 198. today i weigh 140. i had weight loss surgery yrs ago so i have approximately 20 pounds per my doc of extra skin. i am losing my hair and it is no longer curly. i have lost lots of friends. the arthritis has cause my hands, feet,hips and wrists and fingers to look deformed. they hurt terribly. i never sleep right. work was totally cold about it...which i understand....they need people that can do the job. if i over-use my hands and feet...they draw up...sort of like a seizure would look.
my docs have all tried to help except my neuro. he has really made me feel terrible. i am admittedly on a lot of meds....nothing fun by the way....things like stomach meds, allergy meds, i do take an ansaid and mobic and something for nausea along with my chemo and night time meds that help me sleep. at my first visit after i gave the nurse my med list, she left the room. she returned with a kleenex box. on the kleenex box was a sticky note that said " elvis has entered the building." i took a moment and thought...well maybe that is not for me...maybe it was a joke between nurses. but no. i feel now it was directly aimed at me. i even mentioned it. as soon as the doc saw it....my first visit was short, clipped, and to the point. he said...i'll do a spinal tap but thats not definative and we can test you the old way to diagnose ms. i said ok. he said i have looked at your reports. maybe this is all just because you are on too many meds. hmmmm, i thought... i was on NO ms meds. yes...i take lots of vitamins because of my weight loss surgery and yes i have tramadol and mobic for migraines but i am careful not to abuse my meds. as a nurse i felt i was being unfairly misjudged.
i noticed after i left the room and as i was waiting to make my follow up and schedule my tests, the nurse retreived the kleenex box with the sticky note about elvis, wadded it up, and threw it away while looking at me. so....i had the spinal tap. it was only one point off...so he said it was negative. he said i might have had refractory migraines.....i was not having those. they tore my epidural space and i had to have a blood patch. that took 7 days to get and i had to be taken by ambulance for the worst head pain of my life in the middle of all the spinal testing. he said my eyesight seemed ok. i went to a seperate eye doc during that time.
in 6 months i had gotten a whole point worse after no change for 5 yrs in my eyes and i developed astigmatism in both eyes. the neuro said it was just part of aging...which may be true although i think it was highly unlikely. i have always worked hard. i grew up on a farm and i knew not to complain. i worked long, hard, until it's done and i help my co-workers. i now cant move away from a desk and i can only answer phones. now even that is hard. i have a level of anxiety and guilt i have never had before. i feel 100% guilt that i cant remember things, i cant see the computer sometimes, i complain and whine and i have never done that in the past....i feel guilty that my young husband is stuck taking care of me. i feel guilty my kids dont have the mom they used to have. i used to dance. any time any place i danced, sang, was active. if i get up for more than an hour a day...actively...its a superhuman feat for me. i feel such guilt for that.
i feel ashamed that i cant even take a bag of trash to the curb for trash pick up. i feel guilty i cant keep my house clean. i feel guilty because i have to use a can to get into a store and then if they dont have a wheelchair, i have to go back to the car and my family has to shop. to make an omelet...i have to sit in a chair. i feel guilty that we are totally broke and i am a newlywed....we cant afford to do a real wedding, we cant go on a trip, we cant keep groceries because i have no income while i am on medical leave. we had to take on a renter and we are now really in debt and in a huge bind financially. i filed for disability while i am on leave from work during the rituxin chemo. i feel really guilty about that.
now....what i am getting to is what is making me feel the worst. this neurologist is so hateful. i feel like he judged me immediately from a sticky note written by a nurse that never even talked to me. the terrible thing....i work for this company. i am ashamed to be affiliated with them. i dont want to be associated with an organization that treats people that way. my office and their office is owned by the same company. i started noticing the other docs and nurses talking about patients that were on less meds than i am and making it seem like they were basically weak minded people who whine and cant take pain. that is soooooo not true.
finally...i went to see my family doc...who is an angel truelly sent to take care of me. he has been a rock. he and my rheumatologist have unbeknownst to them...gotten me through this. he showed me a recent letter from the neurologist. my mother and husband went to my last visit with me. he said to us all...for insurance to cover meds and treatment for MS...you must have 4 or more lesions. he said...you have the one on your spine and the spot in your brain. so i said...what does this mean? do you think i have ms or not. he said. i cant call it full blown MS but it is probable ms. everything points that way. there is no definitive test that says yes or no. i said but in your opinion it looks like i have developed the signs and symptoms and we are calling it probable MS....but you wont treat it until it gets worse. he CHUCKLED....and said well yes i guess thats one way to put it. hmmm.
i went to see my rheumatologist. i told her and my family doc everything he said including the fact that he said when my hands and feet draw up painfully for 30 minutes or so at a time with no warning....its because i was breathing wrong. yeah....breathing wrong???? i took a video of it. i havent shown him yet. i dont know if i'm seeing him again. i tried to make some chicken salad. i loved to cook. i pulled a chicken breast apart. it was too much for my hands and they drew up. it is very painful and can last from 5 to 30 minutes. my daughter video taped it on my phone. i spoke calmly about it while it was happening, i breathed normally, i explained what was happening, why it was happening and i spoke about the fact that i was breathing and speaking very normally and staying calm.
i also went to see a urologist. i told her about the "probable" MS. she did several tests because i have malformed kidneys from birth anyway. my new symptom though was the fact that i was urinating on myself, in the bed, and i had defecated 3 times on myself. this has been humiliating. she felt that the "probable" MS is weakening my pelvic wall and also make me sexually disfunctional.
this week i got letters. i am supposed to see a doctor for state disability next month to go over the probable ms symptoms. my family docotr told me some things yesterday. he said i am in very poor health right now. he said he can see me getting progressively worse. i told him everything the neurologist did and said. he then showed me the recent letter he got from that neurologist. he told my doctor i had been evaluated i it was not likely ... NOT LIKELY...MS. that is a totally different diagnosis than he gave me the three times i have asked his opinion. each time the neuro was asked....in front of my mother, daughter, and husband...he said probable.
my family doctor said this will be a problem for me. he said not likely and probable are two totally different diagnosis. he ( my family doc) does not want me to see this neuro again. my rheumatologist does not want me to see the other MS specialist. i am at square one with this and my state doc appt is july 14th and july 17th. from my symptoms and family history....i know that i have probable MS.
when do doctors lose their caring and become so cold????? i fall a lot, i have no balance, i see double a lot, i have terrible headaches, i have pain in my spine where the supposed lesion is exposed. he was supposed to do a follow up MRI 3 mths after my first rituxin. it has now been a year. how can he professionally say it's unlikely and not probable with no follow up? i have seen him i think...5 times. he comes in ...says little rude comments, makes rude faces, has never touched me, tells me yeah you have the lesion and spot but they arent huge, and tells me to come back in a few months. if i am wrong and misjudging him....i apologize. i think he has just made me feel worse, he has made me feel crazy, he has made me feel guilt i shouldnt feel,and i think he will hinder any help i may get from the disability system.
i dont know why i wrote all that.... i think i just needed to get it out. i am not an abuser of my meds or the system. i never wanted to give up nursing, reading, hiking, skating...... i LOVED my work. i LOVED my life. what i feel is guilt and shame for having to ask for help. i feel that this man needs to re-evaluate why he is a doctor. he has made me feel lower than low. i'm not going to let him do that anymore.
i found this site today and it gave me a tremendous amount of hope and relief. i'm not crazy. i'm not alone. i wont allow him to poison my mind with elvis comments and misinformation to my other docs. i'm finding a new neuro. i will feel better. i refuse to dread going to his office to be told...wellllllll....lets let your rheumatologist do the chemo and if it works great, and if you develop more lesions then i'll see what i can do. i dont want more lesions. i want someone that cares and wants to stop the lesions. i'm ready for answers instead if snide comments. thanks to everyone here that posted and helped me understand about the probable ms thing.
i am going to see my daughters neuro. my family doc actually recommended her. he adjusted some meds and i feel a little better. i am still very nauseated and i throw up a lot but we are working on that as well. i'm so glad i saw my doc the other day, i am so glad he showed me what the neuro had said, and i am so glad that i have decided to surround myself with a team that wants to help me and a team that wont judge me or call me names or lie to me about what he will say to my other docs. i wont say his name....but i will send him a copy of this.....he needs to treat people like the sick, hurting, trusting people they are and not snap judge or treat them as the next paycheck he will receive.
i want help. i want to not feel guilty. i want to be in control of my health and im not. its frustrating. i will get some part of my life back. i promise that to me. i pray God helps me and has put me on the path to this information i can use. thanks for listening
i guess i didnt really have a question....i just needed to get some things out. thanks for listening.**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**
You have enough going on without having to deal with a neuro who isn't helping you.
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