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What do you think?- What would be your advice on my situation.
This is how my mess of health issuees started; 13 diagnosed with Nuerocardiogenic syncope ( could be just a seperate thing)
16 years old; I thought I had a bladder infection (I have had so many) I didn't and had a cytoscopy where they reffered me to a gynecologist. Had laproscopic surgery to remove a cyst sitting on my bladder and they found endometriosis.
I had 5-6 surgeries for this supposed endometriosis from then to now. I kept getting pain from my waist down and was sure it had to be endometriosis. Still several supposed bladder issues (no infection)
Was told by a chiropractor (had a couple accidents) that he would suggest I go to a rheumatologist for fibromyalgia testing (19 years old)
19 yrs. Dx 3 times with fibromyalgia. Then weird things started happenning couldn't empty my bladder and had to be catherized several times to pee. I developed random tremors and hands arms kept falling asleep.
19 yrs Face drooped all on right side. Drooling. Went to ER and wasn't bells palsy. face was numb. Still no one knows why and it stayed for 3 days and then left.
Very fatigued exhausted. Had to withdraw from classes from college. Felt so weak. Stated dropping things. Very clumsy.
20 years dx with nuerogenic bladder chronic constipation. Tremors more predominant. Good days became less common than bad days. Still slept all the time. xcouldn't barely stay awake with ginseng caffieine. Put on Narcolepsy meds. I was put on so many meds and it was awful.
21 years old had two concusions. had vertigo more often and stayed dizzy. Felt like the right side of my body has over sensitive nerves and left is normal. Constantly still having pain from the waist down. Feels like my hips aare uneven and alot of muscle stiffness.
21 yrs. Started not remeber where I was at times ... the places I have been so many times. I have always been absent minded (ADD) but much more like there are big grey spots in my memory. I don't know how to explain it.
Driving home I would just sort not recognize my surroundings and get panicked like i was lost and sometimes it lasted a few minutes sometimes a few seconds.
Went to a nuerologist and after talking to my aunt who has ms (she suggested I see a nuerologist not a rhuematologist) 1 st dr was very rude and demnded he test me for MS just so I know for sure I don't. he did and everything was neg. spinal tap, mris...
21 stuff still the same just getting weirded and dissappearing.
23 moved to Tampa to see a better physicians group. In Tampa I was riding a bus to a doctor and felt dizzy (worse ever) and didn't know where I was. Someone brought me to my doctor felt drunk.. i was reffered to a nuero to do another mri of my brain.
Seen her, she specializes in miagraines. Had them from concussions probably. Then started fainting alot more here so had to focus on that issue by going to a cardiologist. They said my blood pressure kept dropping when I stand to 60/20 or 65/30. So I was blacking out they found it on tilt table testing.
It was said to be malfunctioning of the autonomic nervous system.
The MRI of my brain was fine again they looked at my old records again and ruled it out as a possibility.
25- The pain from my waste down started getting so bad itg hurt to the soles of my feet and hurt to walk or move. Sent to Pelvic Pain Management doctor. Was sent to physical therapy, follow up urology, follow up with GI and perscribed elavil for pain.
The elavil worked so well but then my heart started racing from it and had to get off it. It helped my pain and gave me energy. I sleep currently atleast 10+ hours. I was awarded disability last year. My job wouldn't let me come back to work
and I still haven't been physically able to hold down a full time job and all my employers told me to apply for disability and I refused for pride but finally did last year and tokk two months to get it.
Amazing I beleive God was doing for me what i couldn't do for myself and It was a miracle. A month later and I would be homeless.
I got off the Elavil and the pain was lessened then and it became full force again. i was having problems (and currently) with my bladder. Its been retaining and can't empty it as much and it started leaking now.
This is my last episode ^ and then my face on the right side drew up and started twitching and I couldn't stand up straight. <Im sure I am leaving things out my memory isn't the best) I went to the ER
The Er doctor said I need to be tested for MS. Told him I just was about 2 years ago to 1 ago and he said it needs to be done again.
My right starts blurring and double vision so I went to the eye doctor and was diagnosed with pytosis in the right eye.
I then experienced tingling (which isn't new) and it was more intense, tingling on my head, on my tounge and then like my brain is vibrating. I head felt numb. my neck made a feeling like a bug zapper. Thats the only way i can explain it.
Went to physical Therapy and I was told the range of motion in my right hip is off and my right shin has spacticity. She works with people with MS and told me that this could be consistant with it.
I have never had and abnormal spine stuff like degenerative disc or herniated disc. SO I don't know why I would have hip problems or anything. I never broke a bone and was only in minor accidents with just stiff
muscles and aches after. I have had alot of fibromyalgia syptoms but was undiagnosed and it still dosen't explain the nuerological parts.
I thought it was the endometrisosi but my last two surgeries none was found. Then I get stressed out so it gets worse amnd my muscles just jerk random spots places. Went back to the migraine sppecialist and was blown off
she thinks I need to see a psychologist. And because I am so tired of hearing that I went to be evaluated so waiting for those results just to bring them to the new nuerologist i see June 6th
I still having issues now but the face went bact to normal after a week, I am not jerking now but I caught some cold and have had it for two weeks... Started my female cycle (always makes it worse) and my hip pain is bad again...
the pain in my low back, thighs and all the way to the soles of my feet. Still have a little numbness in my face on the right side but I can deal with it. I get tingling but it usually goes away really quick.
What would be your advice? How do talk to my doctor and explain this stuff. i get the she's got to be crazy so much? How do I tell my new doctor this stuff? he has all my medical records already. Does anyone have this kind of experience?
Stephanie
16 years old; I thought I had a bladder infection (I have had so many) I didn't and had a cytoscopy where they reffered me to a gynecologist. Had laproscopic surgery to remove a cyst sitting on my bladder and they found endometriosis.
I had 5-6 surgeries for this supposed endometriosis from then to now. I kept getting pain from my waist down and was sure it had to be endometriosis. Still several supposed bladder issues (no infection)
Was told by a chiropractor (had a couple accidents) that he would suggest I go to a rheumatologist for fibromyalgia testing (19 years old)
19 yrs. Dx 3 times with fibromyalgia. Then weird things started happenning couldn't empty my bladder and had to be catherized several times to pee. I developed random tremors and hands arms kept falling asleep.
19 yrs Face drooped all on right side. Drooling. Went to ER and wasn't bells palsy. face was numb. Still no one knows why and it stayed for 3 days and then left.
Very fatigued exhausted. Had to withdraw from classes from college. Felt so weak. Stated dropping things. Very clumsy.
20 years dx with nuerogenic bladder chronic constipation. Tremors more predominant. Good days became less common than bad days. Still slept all the time. xcouldn't barely stay awake with ginseng caffieine. Put on Narcolepsy meds. I was put on so many meds and it was awful.
21 years old had two concusions. had vertigo more often and stayed dizzy. Felt like the right side of my body has over sensitive nerves and left is normal. Constantly still having pain from the waist down. Feels like my hips aare uneven and alot of muscle stiffness.
21 yrs. Started not remeber where I was at times ... the places I have been so many times. I have always been absent minded (ADD) but much more like there are big grey spots in my memory. I don't know how to explain it.
Driving home I would just sort not recognize my surroundings and get panicked like i was lost and sometimes it lasted a few minutes sometimes a few seconds.
Went to a nuerologist and after talking to my aunt who has ms (she suggested I see a nuerologist not a rhuematologist) 1 st dr was very rude and demnded he test me for MS just so I know for sure I don't. he did and everything was neg. spinal tap, mris...
21 stuff still the same just getting weirded and dissappearing.
23 moved to Tampa to see a better physicians group. In Tampa I was riding a bus to a doctor and felt dizzy (worse ever) and didn't know where I was. Someone brought me to my doctor felt drunk.. i was reffered to a nuero to do another mri of my brain.
Seen her, she specializes in miagraines. Had them from concussions probably. Then started fainting alot more here so had to focus on that issue by going to a cardiologist. They said my blood pressure kept dropping when I stand to 60/20 or 65/30. So I was blacking out they found it on tilt table testing.
It was said to be malfunctioning of the autonomic nervous system.
The MRI of my brain was fine again they looked at my old records again and ruled it out as a possibility.
25- The pain from my waste down started getting so bad itg hurt to the soles of my feet and hurt to walk or move. Sent to Pelvic Pain Management doctor. Was sent to physical therapy, follow up urology, follow up with GI and perscribed elavil for pain.
The elavil worked so well but then my heart started racing from it and had to get off it. It helped my pain and gave me energy. I sleep currently atleast 10+ hours. I was awarded disability last year. My job wouldn't let me come back to work
and I still haven't been physically able to hold down a full time job and all my employers told me to apply for disability and I refused for pride but finally did last year and tokk two months to get it.
Amazing I beleive God was doing for me what i couldn't do for myself and It was a miracle. A month later and I would be homeless.
I got off the Elavil and the pain was lessened then and it became full force again. i was having problems (and currently) with my bladder. Its been retaining and can't empty it as much and it started leaking now.
This is my last episode ^ and then my face on the right side drew up and started twitching and I couldn't stand up straight. <Im sure I am leaving things out my memory isn't the best) I went to the ER
The Er doctor said I need to be tested for MS. Told him I just was about 2 years ago to 1 ago and he said it needs to be done again.
My right starts blurring and double vision so I went to the eye doctor and was diagnosed with pytosis in the right eye.
I then experienced tingling (which isn't new) and it was more intense, tingling on my head, on my tounge and then like my brain is vibrating. I head felt numb. my neck made a feeling like a bug zapper. Thats the only way i can explain it.
Went to physical Therapy and I was told the range of motion in my right hip is off and my right shin has spacticity. She works with people with MS and told me that this could be consistant with it.
I have never had and abnormal spine stuff like degenerative disc or herniated disc. SO I don't know why I would have hip problems or anything. I never broke a bone and was only in minor accidents with just stiff
muscles and aches after. I have had alot of fibromyalgia syptoms but was undiagnosed and it still dosen't explain the nuerological parts.
I thought it was the endometrisosi but my last two surgeries none was found. Then I get stressed out so it gets worse amnd my muscles just jerk random spots places. Went back to the migraine sppecialist and was blown off
she thinks I need to see a psychologist. And because I am so tired of hearing that I went to be evaluated so waiting for those results just to bring them to the new nuerologist i see June 6th
I still having issues now but the face went bact to normal after a week, I am not jerking now but I caught some cold and have had it for two weeks... Started my female cycle (always makes it worse) and my hip pain is bad again...
the pain in my low back, thighs and all the way to the soles of my feet. Still have a little numbness in my face on the right side but I can deal with it. I get tingling but it usually goes away really quick.
What would be your advice? How do talk to my doctor and explain this stuff. i get the she's got to be crazy so much? How do I tell my new doctor this stuff? he has all my medical records already. Does anyone have this kind of experience?
Stephanie
Have you been tested for Lupus??? I am praying for you Stephanie!!! So many of the things you describe sound like me. I had endo for years and had a total hysterectomy at 28 years old. I am 32 now. It surely helped the pain below the waist, but all the other things, vertigo, numbness, stiffness, tingling, weakness, buzzing, zaps, fatigue, etc. have stayed and many have worsened.
Have you thought about a MS specialist. I am seeing one now and even if you do not have MS, I know mine is trying to rule out mimics and figure out what it is. Don't give up. I too have been looked at over and over as I'm crazy and have somehow manifested this stuff due to stress or childhood issues. I know my body...you know your body...don't give up.
love and prayers
Stacie
Have you thought about a MS specialist. I am seeing one now and even if you do not have MS, I know mine is trying to rule out mimics and figure out what it is. Don't give up. I too have been looked at over and over as I'm crazy and have somehow manifested this stuff due to stress or childhood issues. I know my body...you know your body...don't give up.
love and prayers
Stacie
Hi Stephanie,
My oh my. Did a electrophysiologist dx your neurocardiogenetic syncope? If so, and if you are still unable to manage it, you may need to speak to this doctor in regards to treatment, or meds. Did you receive your concussions from falling from the syncope?
Concussions can cause so many residual issues. From what I understand, symptoms from concussions can last for a very long time. A lot of what you describe. This should seriously looked into.
In my opinion, you really do need to get the syncope under control, you can get hurt even worse than you already have. I'm only familiar with it, because my daughter has it.
Wishing you well with your doctor, and sorry for all you are going through.
-Shell
My oh my. Did a electrophysiologist dx your neurocardiogenetic syncope? If so, and if you are still unable to manage it, you may need to speak to this doctor in regards to treatment, or meds. Did you receive your concussions from falling from the syncope?
Concussions can cause so many residual issues. From what I understand, symptoms from concussions can last for a very long time. A lot of what you describe. This should seriously looked into.
In my opinion, you really do need to get the syncope under control, you can get hurt even worse than you already have. I'm only familiar with it, because my daughter has it.
Wishing you well with your doctor, and sorry for all you are going through.
-Shell
Forgot to mention, I was hospitalized in November of last year. My WBC was at 20,000. I was given iv antibiotics 3 times and went to normal again.
From my chest up I turned red (like sunburn) it felt like sunburn and sand -gritty. It was November 30th and i had not been exposed to sun. It went away in two weeks.
My pain from the waist down keeps me from getting comfortable when I sleep. I can't ever just lay on my back without my knees bent and its still not that comfortable. it keeps me from sleeping when it gets bad.
But I didn't have an infection, that anyone could find. I have had every blood test known to man atleast twice and still there aren't any answers as to why.
It was actually right before I started mt period (2 days before) and my joints felt like they hurt so bad from my waste down.
From my chest up I turned red (like sunburn) it felt like sunburn and sand -gritty. It was November 30th and i had not been exposed to sun. It went away in two weeks.
My pain from the waist down keeps me from getting comfortable when I sleep. I can't ever just lay on my back without my knees bent and its still not that comfortable. it keeps me from sleeping when it gets bad.
But I didn't have an infection, that anyone could find. I have had every blood test known to man atleast twice and still there aren't any answers as to why.
It was actually right before I started mt period (2 days before) and my joints felt like they hurt so bad from my waste down.
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