Aa
My searches keep bringing me back to this site
Hello all , I happened across this site months ago . I will start by thanking everyone that has posted, I don't feel so alone ... I have been surfing the web for two years now and everything gets to be a blurr after a while so I finally have broke down and reached out to others ( which used to be totally out of character but I am a work in progress ). I'm not sure if I am looking for answers, venting or trying to get my sanity back ... maybe all the above :)
I am going to try and sum this up as neat as possible but that no longer seems that simple... so here it goes . First off , I am 34 years old and been a dialysis nurse for the past 13 years. Things used to be so black and white but having medical knowledge no longer seems relevent ... If anything it has made me more frustrated because text book knowledge has just confused matters even worse. I am losing faith in my doctors and have come to the realization that trying to self diagnose doesn't help much either . I have found myself attributing my many symptoms to different issues with simple fixes ( None of which have worked and I know in my heart they are getting too far fetched to even convice myself of ). Well ... Here is my story : When I was 12 I had a brief episode of bilateral hand drop that resolved quickly but left me with slight hand weakness that I rarely noticed over the next 20 years. When I was 21 I started having excruciating back pain and was told it was due to endometriosis . Multiple lasers/ lap procedures later without relief . In a last ditch effort I had a uterine suspension which also had no impact on my pain that by now had started radiating down my leg . For the next 10 years I continued to have pain but overall no real changes in my health. Periodically I would break out in hives that would last up to two months but usually only occurred every few years and I dismisses this as an allergy . Two years ago I had an episode of severe hives that had me miserable. After about two months of this I began having stabbing electric type pains in my neck that would almost knock me to my knees but only lasted a few seconds. My head would tingle for a minute and then everything was normal. I recalled having a few episodes in the past and thought " pinched nerve " and went on . Within the next couple months everything seemed to fall apart . I started having trouble with urinary retention/ hesitancy but dismissed it as being a side effect of benadryl . My lower legs and feet started going numb and I began tripping on rugs but the neurologist ordered brain and thoracic MRI's which were normal . Next was a lumbar MRI which showed I had a small herniated disc and I started PT . It wasn't until my thumb went numb and I started losing the use of my hands again that I knew it couldn't be from a lumbar disc . This was dismissed by my neuro as being related to the hand weakness when I was 12 but over the next few weeks I got to where I had trouble writing , tying my shoes and anything else that required fine motor skills or strength. Every appointment I mentioned that my bladder issues , pain, numbness and twitching were getting worse . I was referred to a surgeon for my herniated disc and a medical chiropracter. I was told my herniated disc should not be causing my pain and loss of balance and that my EMG was normal ( which I found out later wasn't / the muscles effected were the ones responsible for foot drop) . By the end of my 12 weeks of traction and electro stim. I had almost totally lost the ability to urinate without applying pressure to my bladder. I was referred to a urologist and in the month it took to see him and have the urodynamics testing done I had lost all ability to urinate and was diagnosed with atonic / flaccid bladder with decreased sensation and instructed to self cath , find a good neuro and follow up in three months . That was two months ago , in the past two months I have had another neg brain MRI , neg lumbar puncture , abnormal EMG and abnormal nerve conduction study but still no diagnosis . Urologist , Neurologist and PCP have all brought up MS as far as symptoms. Whatever the diagnosis they agree that there is peripheral and CNS involvement . Searches of my symptoms keep bringing me to MS sites but no tests have confirmed any diagnosis. The latest is vibration feeling in my left leg and muscle cramps in the arches of my feet that started a few weeks ago when I pointed my toes to put on my jeans and have already escalated to waking me up constantly throughout the night. Today the cramps have started effecting my hand , mild so far but I can't help but wonder what is next . I am just lost at this point and have gotten to where I hate even mentioning new problems to my MD . Any input would be appreciated . Just posting has already made me feel better. Best wishes to all of you and God Bless
I am going to try and sum this up as neat as possible but that no longer seems that simple... so here it goes . First off , I am 34 years old and been a dialysis nurse for the past 13 years. Things used to be so black and white but having medical knowledge no longer seems relevent ... If anything it has made me more frustrated because text book knowledge has just confused matters even worse. I am losing faith in my doctors and have come to the realization that trying to self diagnose doesn't help much either . I have found myself attributing my many symptoms to different issues with simple fixes ( None of which have worked and I know in my heart they are getting too far fetched to even convice myself of ). Well ... Here is my story : When I was 12 I had a brief episode of bilateral hand drop that resolved quickly but left me with slight hand weakness that I rarely noticed over the next 20 years. When I was 21 I started having excruciating back pain and was told it was due to endometriosis . Multiple lasers/ lap procedures later without relief . In a last ditch effort I had a uterine suspension which also had no impact on my pain that by now had started radiating down my leg . For the next 10 years I continued to have pain but overall no real changes in my health. Periodically I would break out in hives that would last up to two months but usually only occurred every few years and I dismisses this as an allergy . Two years ago I had an episode of severe hives that had me miserable. After about two months of this I began having stabbing electric type pains in my neck that would almost knock me to my knees but only lasted a few seconds. My head would tingle for a minute and then everything was normal. I recalled having a few episodes in the past and thought " pinched nerve " and went on . Within the next couple months everything seemed to fall apart . I started having trouble with urinary retention/ hesitancy but dismissed it as being a side effect of benadryl . My lower legs and feet started going numb and I began tripping on rugs but the neurologist ordered brain and thoracic MRI's which were normal . Next was a lumbar MRI which showed I had a small herniated disc and I started PT . It wasn't until my thumb went numb and I started losing the use of my hands again that I knew it couldn't be from a lumbar disc . This was dismissed by my neuro as being related to the hand weakness when I was 12 but over the next few weeks I got to where I had trouble writing , tying my shoes and anything else that required fine motor skills or strength. Every appointment I mentioned that my bladder issues , pain, numbness and twitching were getting worse . I was referred to a surgeon for my herniated disc and a medical chiropracter. I was told my herniated disc should not be causing my pain and loss of balance and that my EMG was normal ( which I found out later wasn't / the muscles effected were the ones responsible for foot drop) . By the end of my 12 weeks of traction and electro stim. I had almost totally lost the ability to urinate without applying pressure to my bladder. I was referred to a urologist and in the month it took to see him and have the urodynamics testing done I had lost all ability to urinate and was diagnosed with atonic / flaccid bladder with decreased sensation and instructed to self cath , find a good neuro and follow up in three months . That was two months ago , in the past two months I have had another neg brain MRI , neg lumbar puncture , abnormal EMG and abnormal nerve conduction study but still no diagnosis . Urologist , Neurologist and PCP have all brought up MS as far as symptoms. Whatever the diagnosis they agree that there is peripheral and CNS involvement . Searches of my symptoms keep bringing me to MS sites but no tests have confirmed any diagnosis. The latest is vibration feeling in my left leg and muscle cramps in the arches of my feet that started a few weeks ago when I pointed my toes to put on my jeans and have already escalated to waking me up constantly throughout the night. Today the cramps have started effecting my hand , mild so far but I can't help but wonder what is next . I am just lost at this point and have gotten to where I hate even mentioning new problems to my MD . Any input would be appreciated . Just posting has already made me feel better. Best wishes to all of you and God Bless
Hi Amanda, and welcome to the forum!! This is a great place to be when you are on the quest for a dx. I too am undx with lots of MS like symptoms, clear brain MRI last Oct. I know exactly how it feels to be unwell and not know why.
From being on this forum since July of 07, I have heard many stories just like yours and mine. We just have to be tough and hang in until we get our dx, even though every day that passes without a dx makes our lives harder.
Have you had a chance to read any of the health pages? They are really informative and helpful in trying to understand MS and it's mimics.
I look forward to getting to know you better and I'm really glad that you found this forum. It is just a wonderful place with very knowledgable and supportive people. One thing you should know for sure is that you are never alone, we are all here anytime you need to talk and we all understand what you are going through.
Take care,
doni
From being on this forum since July of 07, I have heard many stories just like yours and mine. We just have to be tough and hang in until we get our dx, even though every day that passes without a dx makes our lives harder.
Have you had a chance to read any of the health pages? They are really informative and helpful in trying to understand MS and it's mimics.
I look forward to getting to know you better and I'm really glad that you found this forum. It is just a wonderful place with very knowledgable and supportive people. One thing you should know for sure is that you are never alone, we are all here anytime you need to talk and we all understand what you are going through.
Take care,
doni
Hi Amandamac,
Welcome to the medhelp MS group - your story is exactly why this site continues to grow. So many people are out there searching for answers and even when we can't give them, we can at least empathize with you.
Your story sure sounds like it contains a lot of markers of MS symptoms, but it probably is going to take a while longer for the doctors to flush out the diagnosis. I'm assuming that you have had the full workup of blood labs done to eliminate all the mimics?
MS dx w/o a positive MRI or LP has been the very hot topice lately and I'm sure you will find lots here to read. Stay open to the possibilities.
We hope you will come through here often and continue to share the story of your journey - misery really does love company!
my best,
Lulu
Welcome to the medhelp MS group - your story is exactly why this site continues to grow. So many people are out there searching for answers and even when we can't give them, we can at least empathize with you.
Your story sure sounds like it contains a lot of markers of MS symptoms, but it probably is going to take a while longer for the doctors to flush out the diagnosis. I'm assuming that you have had the full workup of blood labs done to eliminate all the mimics?
MS dx w/o a positive MRI or LP has been the very hot topice lately and I'm sure you will find lots here to read. Stay open to the possibilities.
We hope you will come through here often and continue to share the story of your journey - misery really does love company!
my best,
Lulu
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