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WHAT THE HECK IS GOING ON WITH ME!!!
by ozzy66, Nov 05, 2009 08:03PM
Quix, I'm posting my story....thank you!
As I look back over time I do believe I have had something going on probably for years...I never put them together as they were subtle and not sooo compounded at the time. My real decline started with having my gallbladder removed after I was VERY sick for weeks(3/08). After the removal within weeks I started having horrible pain in my chest. Had scope and was dx with bile reflux and gastritis as the bile was now backing up into my stomach and throat. Have been dx w/ irritable bowel several years ago. Then in April of this year I had a very strange episode as I call it....went to bed and had this sensation in the middle of my chest like movement. Not pain or pressure. Then had pain which felt like it was to the bone in my left arm with tingling, burning sensation in my entire trunk. I then became very nauseous. Went to hospital by ambulance as I thought I was having a heart attack. All tests came back fine. I have suffered for years with neck issues going into my shoulder, right arm and back. Have had tingling, burning, numbness for years. Went to neurosurgeon after my MRI showed a herniated disk in C6-7. He felt that everything on the right went along with the disk but could not figure out all my other symptoms. He referred me to neurologist for possible carpal tunnel and rheum for possible fibro. I do in fact have mild carpal tunnel in both arms however, it does not explain the pain that goes from my elbows up along with burning, tingling etc. He did listen to me and seem to take me serious...through the process he noted that my B12 was very low and that I do not absorb it orally. Began the routine of injections. He believes that I have fibromyalgia. I love to walk and my husband and I would walk approx 3miles 2x per week. At the end of last year I started noticing that my legs especially my calves would become very painful and then my legs felt weak. It was if I was dragging myself instead of walking. I tore my left hamstring this summer and everything has gone down hill from there! I am exhausted! Was having a terrible time sleeping, the pain all over was much worse at night., would wake and feel like I never slept, my body has become very weak. I have noticed that I have lost muscle mass especially in my legs (I have always been very muscular even without much exercise) After the episode in April I did not have another one for about a month and a half. I then had two in one week w/ the 3rd being VERY strong. Exact same symptoms as the first but much more intense. This time the tingling burning went through my entire body. Felt it very strongly in the groin. I had an incredible pain in the back of my left shoulder that lasted for two days. Movement and breathing made it much worse. Went back to neurologist, still feels it's fibro. Ironically in May I started having issues with my menst. cycle. I started to bleed for 3weeks with only a couple days break in between. I wondered if all of this could be related to hormones. My gyne was adamant it was not. I ended up having ablasion Oct 1st as the bleeding just would not stop. Went to rheum., he is ADAMANT against dx pts w/fibro. Said he would treat me as if I had it but would not dx me w/it. Neuro did order an MRI. It indicates that there are scattered non specific white matter lesions present in the frontal lobe. I raised the question to neuro, could this be MS...he said no the lesions are not in the area of the brain for ms. Ended up having to take a leave of absence from work as I was so damn exhausted both sleepy and physical exhaustion. Started having horrible headaches and most notably vision issues in last month and a half. Went to eye dr. yesterday he could find nothing. I am dizzy, balance seems off, eyes hurt and get sudden blurry/double vision which passes and just feel that I have fuzzy unclear thinking for months. Did have a spinal tap a week ago today, have not received the results yet. He said he is checking for lymes, MS and other things??I also ended up having my esoph. dialated approx 2mos ago as I was having pressure to the right of my adams apple and trouble swallowing. Dr. said I had a twist in the esoph and he dialted it. It's been better since for swallowing but I still get pressure in neck. I have noticed that at night a part of my body usually leg/arm will just flop/twitch. Arms and legs very weak like no strength. For years have had a stabbing jolt in my ears or head that hurts very bad but is very quick. I now am experiencing pain in my lower jaw both sides, last night new symptom of my forehead burning like a chemical burn?? It lasted about 20mins and have had it on and off today.For past two weeks my neck is very stiff and painful. At times more increased lately my body feels shaky and weak....there are so many symptoms that are so weird and all over it is amazing. I do not know if it is ms or fibro. Not sure which avenue to pursue. I do believe I should have an MRI of my entire spine as I am now on my 2nd herniated disk in 4 years (neck& lower back) Could those of you have been going down this road longer than me shed some light onto my symptoms and if they resemble ms more or fibro more. Something is definately wrong. This hit huge out of the blue and has drastically changed my life. I have also had every blood test you can imagine, full testing of heart, lungs, ultrasound of all organs, ct scans etc. Sorry so lengthy but you know the story. Input from others would be so greatly appreciated. Thank you!!
As I look back over time I do believe I have had something going on probably for years...I never put them together as they were subtle and not sooo compounded at the time. My real decline started with having my gallbladder removed after I was VERY sick for weeks(3/08). After the removal within weeks I started having horrible pain in my chest. Had scope and was dx with bile reflux and gastritis as the bile was now backing up into my stomach and throat. Have been dx w/ irritable bowel several years ago. Then in April of this year I had a very strange episode as I call it....went to bed and had this sensation in the middle of my chest like movement. Not pain or pressure. Then had pain which felt like it was to the bone in my left arm with tingling, burning sensation in my entire trunk. I then became very nauseous. Went to hospital by ambulance as I thought I was having a heart attack. All tests came back fine. I have suffered for years with neck issues going into my shoulder, right arm and back. Have had tingling, burning, numbness for years. Went to neurosurgeon after my MRI showed a herniated disk in C6-7. He felt that everything on the right went along with the disk but could not figure out all my other symptoms. He referred me to neurologist for possible carpal tunnel and rheum for possible fibro. I do in fact have mild carpal tunnel in both arms however, it does not explain the pain that goes from my elbows up along with burning, tingling etc. He did listen to me and seem to take me serious...through the process he noted that my B12 was very low and that I do not absorb it orally. Began the routine of injections. He believes that I have fibromyalgia. I love to walk and my husband and I would walk approx 3miles 2x per week. At the end of last year I started noticing that my legs especially my calves would become very painful and then my legs felt weak. It was if I was dragging myself instead of walking. I tore my left hamstring this summer and everything has gone down hill from there! I am exhausted! Was having a terrible time sleeping, the pain all over was much worse at night., would wake and feel like I never slept, my body has become very weak. I have noticed that I have lost muscle mass especially in my legs (I have always been very muscular even without much exercise) After the episode in April I did not have another one for about a month and a half. I then had two in one week w/ the 3rd being VERY strong. Exact same symptoms as the first but much more intense. This time the tingling burning went through my entire body. Felt it very strongly in the groin. I had an incredible pain in the back of my left shoulder that lasted for two days. Movement and breathing made it much worse. Went back to neurologist, still feels it's fibro. Ironically in May I started having issues with my menst. cycle. I started to bleed for 3weeks with only a couple days break in between. I wondered if all of this could be related to hormones. My gyne was adamant it was not. I ended up having ablasion Oct 1st as the bleeding just would not stop. Went to rheum., he is ADAMANT against dx pts w/fibro. Said he would treat me as if I had it but would not dx me w/it. Neuro did order an MRI. It indicates that there are scattered non specific white matter lesions present in the frontal lobe. I raised the question to neuro, could this be MS...he said no the lesions are not in the area of the brain for ms. Ended up having to take a leave of absence from work as I was so damn exhausted both sleepy and physical exhaustion. Started having horrible headaches and most notably vision issues in last month and a half. Went to eye dr. yesterday he could find nothing. I am dizzy, balance seems off, eyes hurt and get sudden blurry/double vision which passes and just feel that I have fuzzy unclear thinking for months. Did have a spinal tap a week ago today, have not received the results yet. He said he is checking for lymes, MS and other things??I also ended up having my esoph. dialated approx 2mos ago as I was having pressure to the right of my adams apple and trouble swallowing. Dr. said I had a twist in the esoph and he dialted it. It's been better since for swallowing but I still get pressure in neck. I have noticed that at night a part of my body usually leg/arm will just flop/twitch. Arms and legs very weak like no strength. For years have had a stabbing jolt in my ears or head that hurts very bad but is very quick. I now am experiencing pain in my lower jaw both sides, last night new symptom of my forehead burning like a chemical burn?? It lasted about 20mins and have had it on and off today.For past two weeks my neck is very stiff and painful. At times more increased lately my body feels shaky and weak....there are so many symptoms that are so weird and all over it is amazing. I do not know if it is ms or fibro. Not sure which avenue to pursue. I do believe I should have an MRI of my entire spine as I am now on my 2nd herniated disk in 4 years (neck& lower back) Could those of you have been going down this road longer than me shed some light onto my symptoms and if they resemble ms more or fibro more. Something is definately wrong. This hit huge out of the blue and has drastically changed my life. I have also had every blood test you can imagine, full testing of heart, lungs, ultrasound of all organs, ct scans etc. Sorry so lengthy but you know the story. Input from others would be so greatly appreciated. Thank you!!
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It really makes post easier to read if you separate it a bit every once in awhile. Especially for those of us who are having double vision, or other vision problems..
Thanks so much, I hope you understand, I sure don't want to hurt anyone's feelings.
{{{{~!~}}}} ShadowsSister
I know you have had lots of bloods but have you been tested for AUTOIMMUNE thyroid disease (which may not show in your basic thyroid blood tests) or celiac disease?
I've been reasearching both a lot lately and was surprised to find celiac disease can cause lots of neuro symptoms as can thyroid disease. Also celiac can cause lesions on the brain.
You saying that your B12 was low and you were not absorbing it flagged me to these two areas as thyroid or celiac can cause this to happen.
CindyCB. x
Shadow Sister: Thank you for the tip.....I know it was long but it's so darn hard to get it all in short. Thank you for trying though!
I hope that you are not offeneded in any way. All of us try to post in paragraphs, so it's not confined to you at all. You will also see some posts in all capital letters. This is because that poster has real problems reading anything smaller.
Glad that you have posted and hope you get to feeling better soon.
All the Best to you,
Heather
like this... OK.. I myself can't read your post either as it's not broken with spaces .. I have double vision and can't read things unless there are breaks in between..
I know it's a bigger post and I would love to read it...but I don't if you want to redo it with breaks in it.. I think you would have more people reading it if you do...OK..
take care
wobbly
dx PPMS