Just wondering if anyone else has periphreal neurapothy symptoms along with their PN symptoms? I dont have just a pelvic pain issue anymore,because now i have muscle spasms through my body?? from heel to any place between there and my neck. Sensitiviity to touch lower extremeties,and some upper. My Hemengioma on my sacrum was specially looked at here recently and showed no nerve impingement. Its a bone legion 1cm. I just find it weird that what started in my bladder,spread through pelvis but now my upper body has symptoms too. I know thats not a symptom of PN. My Dr. also double checked fot Tarlov Cysts. But none were found. T3 MRI S1-S5 through/past coccx. Only things showed up were some swelling around left labia,and the.hemangioma that i already knew was there. Odd thing is, if there is vibration on lower back say from standing next to dryer,or in car,bladder,pgad,and some things feel worse.
Please be careful what you may say in response to this... Im very.vulnerable tonight.
Muscle Spasms?
Re: Muscle Spasms?
Lindsey, I understand this is really heard for you so please take my answer with a grain of salt if it doesn't apply to you. I can only speak from my own experience and it may not apply to you but it is said with sincere concern and compassion.
It's been 10 years ago but I remember very clearly how difficult it was to ride in a car or listen to music with a loud beat because the vibrations made my symptoms much worse, especially pgad.
I don't know for sure why your symptoms have spread. Mine spread too although I don't recall having any upper body symptoms. My central nervous system was so wound up I was literally a nervous wreck.
I don't know what the answer is for you but I think the chances are good that over time you will find the right therapies that will work for you and you will get better. I know it's hard to fight but please hang in there and follow your instincts on what is the right way for you to go.
Hugs,
Violet
It's been 10 years ago but I remember very clearly how difficult it was to ride in a car or listen to music with a loud beat because the vibrations made my symptoms much worse, especially pgad.
I don't know for sure why your symptoms have spread. Mine spread too although I don't recall having any upper body symptoms. My central nervous system was so wound up I was literally a nervous wreck.
I don't know what the answer is for you but I think the chances are good that over time you will find the right therapies that will work for you and you will get better. I know it's hard to fight but please hang in there and follow your instincts on what is the right way for you to go.
Hugs,
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Muscle Spasms?
Thanks,Violate! Looking into autoammune/infectious disease drs.too. Cause its affecting my head now too. Headache,and crawling feeling. Its deff more than just PN if it even is true PN. Some days r harder than others. But Im trying to stay calm cause I know it can make things worse. PTSD can even cause fibro. So Im trying to do my best.
Re: Muscle Spasms?
Hi Lindsey,
I am so sorry you are having more general symptoms.
Have you found any meds that have helped? For me, the first time i tried the gabapentin i felt like i was generally tingling so i didnt continue, but after i had a steroid shot things settled a bit, i tried it again and the drug helped me finally sleep.
Did you recently have the MRI? If so, maybe all that general shaking in the machine led to some temporary sensations.
Hang in there
I am so sorry you are having more general symptoms.
Have you found any meds that have helped? For me, the first time i tried the gabapentin i felt like i was generally tingling so i didnt continue, but after i had a steroid shot things settled a bit, i tried it again and the drug helped me finally sleep.
Did you recently have the MRI? If so, maybe all that general shaking in the machine led to some temporary sensations.
Hang in there
Re: Muscle Spasms?
Lindsey, you definitely need to have automimmune illnesses ruled out. I hope you can get this sorted out.
Violet
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.