Aa
please help!!
Hi everybody i am new to this sight. I have had many different symptoms for three years now, reflux, ibs, right leg weakness pins and needles in hands and feet, limbs fall asleep easily. I went to a chriopractor in Jan 2007 for pins and needles in hands balance problems shoulder stiffness and numbness in back and left foot which i thought must be linked to a car accident i had in nov 2006 (hit someone head on at 40 mph). I also at that time had sharp pain in my right eye and over shooting like i kept having to bring the eye back into focus and a shingle type nerve pain over the right side by my ribs which has come and gone really painfull. After doing a exam on reflexes and eye test she wrote to my doctor who refered me to a neuro doc as she did not think these things were related to the crash. Went to see neuro doc on 2nd of may this year the neuro examine normal except one test when having to close eyes nearly fell over! He ordered mri of spine and head (this is the uk nhs as no insurance three month wait) 4 weeks to go till i get my mri. Two weeks after first appointment i came down with a extreme tirdness (had this before last a couple of days) then flu like symptoms this was the friday eve by sunday morn i could not move for pain i had painfull muscle spasms everywhere all over my body! My friend took me to the doctors on monday who rung my consultant he saw me on the thursday when i was a lttle better by then he said he would try and move mri forward and gave me a presciption for amitriptyline 10mg then he went on holiday for two weeks! it did nothing for the pain and the doctor increased dose to 25mg once at night then 40mg made me sleep all the time! so she changed it to lyrica now on 300mg and seems to be controling the pain so that i can cook clean and look after my three children i can now drive a short distance (4 miles auto car) but i cant walk more then 50 yards unaided 300 with crutches. I have had on and off painfull tight band round my ribs feels like i cant catch my breath, tight band round my right arm and left leg. my ankle is the most painfull with shooting pains and it is swollen hard almost like a muscle but in the wrong place if that makes sence? just above the arch which looks so odd on both feet!. i feel like i tilt to the right all the time and sometimes i find myself right over without realising. The spasms are not present at the moment only twichting at the base of my spine and the tops of my legs by my groin which jerks my legs when sitting. My legs feel heavy and like someone has drained them the same with my tummy its a odd sensation. The heat makes my excisting symptoms worst weather or hot baths.Not being to personal but i have a loss of sensation when having sex and can only feel i want the loo when it becomes painfull i also am always consipated.
Should i stop my lyrica before mri as will this interfer with the results? i dont know enough about this drug to know how it works.please help! sorry this is long.
Should i stop my lyrica before mri as will this interfer with the results? i dont know enough about this drug to know how it works.please help! sorry this is long.
Yes had a basic rheumatoid blood test she thought the knee problems were muscle related to to weakness in the thigh muscle but could not give a reason for the muscle weakness.
I had chickenpots when i was a child never had shingle only call it a shingle type pain cause my mum had shingles when she had her chemo and she discribed the pain to me plus i have had herpes which causes a nerve pain when i had it down my legs. Its a tight band feeling with a unbearable nerve feeling of stabbing and stinging and i cant bear anything to touch it, its around my right side trunk i have not had a bad feeling of it since march but it is still senetive.
I think the back pain is for sure from the accident but i think from going to the chrio she picked up something that had been there along time and i think this muscle spasm would of happened anyway and that the accident is just confusing the issue.
The lyrica is having a effect on the nerve pain im on 300mg enough to allow me to cope at home and collect kids from school but i dont go anywhere else cause i cant walk for long due to the pain in my feet, hip pain and weakness and balance problems i get i look like im drunk when i walk!! It does not help the headaches i sometimes get and the muscle pain in my back like today my back is very painfull and stiff and has looked up. But it reduces the pins and needles the spasms seem to of subsided for now only a few times a day it does nothing for the muscle twitching but thats not painfull just annoying.
thanks for anwering my posts and giving your opinion
Hope your well
I had chickenpots when i was a child never had shingle only call it a shingle type pain cause my mum had shingles when she had her chemo and she discribed the pain to me plus i have had herpes which causes a nerve pain when i had it down my legs. Its a tight band feeling with a unbearable nerve feeling of stabbing and stinging and i cant bear anything to touch it, its around my right side trunk i have not had a bad feeling of it since march but it is still senetive.
I think the back pain is for sure from the accident but i think from going to the chrio she picked up something that had been there along time and i think this muscle spasm would of happened anyway and that the accident is just confusing the issue.
The lyrica is having a effect on the nerve pain im on 300mg enough to allow me to cope at home and collect kids from school but i dont go anywhere else cause i cant walk for long due to the pain in my feet, hip pain and weakness and balance problems i get i look like im drunk when i walk!! It does not help the headaches i sometimes get and the muscle pain in my back like today my back is very painfull and stiff and has looked up. But it reduces the pins and needles the spasms seem to of subsided for now only a few times a day it does nothing for the muscle twitching but thats not painfull just annoying.
thanks for anwering my posts and giving your opinion
Hope your well
Thanks for the timeline. I do think you have a nuerological process going on. By the way, did the rheumatologist do the regular blood tests for the different kinds of arthritis?
You describe shingle-like pain, but did not mention if you've ever had shingles. Did you have chickenpox when you were younger?
I think you also have some musculo-skeletal pain mixed in with the other.
Is the Lyrica having any effect yet? I do hope you start to feel better! Quix
You describe shingle-like pain, but did not mention if you've ever had shingles. Did you have chickenpox when you were younger?
I think you also have some musculo-skeletal pain mixed in with the other.
Is the Lyrica having any effect yet? I do hope you start to feel better! Quix
Thought id give this timew line ago see if it helped but it looks very long and messy.
But here it is anyway.
1995 Glandular fever lasted one year
1996 problems with constipation prescribed firbregel and dx IBS
1998 Pregnant with first child put on a lot of weight had high blood pressure at end had c section as breech. Spinal block was hard to put in and wore off half way through procedure so put me under general.
1998 8 months on bladder problems unable to release bladder fully constant UTI had test done at hospital unstable bladder, pain in pelvic area continues.
1999 go into hospital for lascospany(cant spell) to clear addisions( scar tissue) from csection find bladder has healed to womb problem cleared.
1999 pregnant with second child suffer with symphysis pubis dysfunction could not walk by the end a lot of pain.Had strange rash appear on legs after being in the sun went in to hospital nothing found.
2000 went 16 days over due only dilated to 3cm c section again spinal block hard to get in but works ok this time.
2000 experience pins and needles in my hands and across my tummy put down to anxiety anti depressants prescribed made no difference pins and needles went from tummy but came and went from hands.
2000 fell pregnant again with third child suffered awful sickness went into hospital twice with it put on drip lost one and half stone. Spd again lots of pain. Went to hospital with awful stabbing pain around the ribs scanned for kidney stones nothing found put
it down to pulled muscle due to being sick all the time.
2001 c section spinal block hard again but worked again. Same fatigue pins and needles anti depressants again.
2002 genital herpes aclovir last two weeks
2002 suffer from mood swings very emotional memory problems prescribed Prozac as said depressed again!!!
2003 genital herpes aclovir prescribed last one week.
2003 left shoulder pain with numb patch on back feels like running water down my back. Doctor prescribes anti inflammory. Pain around ribs again for a week goes off again. Come off anti depressants as not helping.
2004 on off pain in hips when walking. Also develop reflux and awful pain in centre of chest start to have problems swallowing food as it sticks go in for gastro examine camera down to see if any problems just inflammation cant find reason why prescribed ranitidine 150mg stay on these for a while pain goes this problem still goes even now. Burp a lot and reflux comes up stings my throat and makes me hoarse.
2005 take up running as feel so fatigue all the time think exercise will help.start to have knee and hip pain.
2006 referred to a rheumatologist she says I have weakness in my thigh muscle leading the thigh bone to drop onto the patella bone and cause grating. Also had pins and needles in hands and pain she x-rayed my knees and hands, hands clear never got result of knees. Dx hands rhaynauds syndrome.
2006 Nov car accident at 40 mph. don’t have x-ray till next day whiplash low back
pain 3 month treatment. X-ray showed slight deterioration in neck and slight curve to spine. Stopped treatment.
2007 Jan shingle type pain to side of trunk of body unable to touch very painful also around top of leg prescribed aclovir went after a week kept coming back no rash. Suffer at time with constipation again with bad piles.
2007 for a while hot baths had made me weak now it was making symptoms worst also hot weather making it worst.
March 2007 went to chrio for balance problems numbness on back pins and needles in hands and feet shingle nerve type pain face pain pain in eyes over shooting of left eye jerky eyes, memory problems word problems reduced sensation in private parts bladder problems, she treated me and asked my doctor to refer me to a neuro doc as problems she could not treat done eye test and reflexes.
May 2nd see neuro doc order blood test and mri. Suggest sinus x-ray come backed completely blocked prescribed sinus spray.
May 14th come down with relentless muscle spasm after a day of muscle aches and fatigue like that till Thursday see consultant again prescribes amitripline which is increased then changed to lyrica and increased over a short time to 300mg.
June/july bladder problems still present with loss of sensations in private parts, balance problems, painfull feet with changes to shape of foot, eyes jerky again constipation awfull.reflux, rib pain on and off. Tight band feeling around my limbs and arms. Sharp electric type pain in head when bending my head forward. Muscle spasm only occasional muscle twitches in bottom base of spine muscle twitches in legs.
But here it is anyway.
1995 Glandular fever lasted one year
1996 problems with constipation prescribed firbregel and dx IBS
1998 Pregnant with first child put on a lot of weight had high blood pressure at end had c section as breech. Spinal block was hard to put in and wore off half way through procedure so put me under general.
1998 8 months on bladder problems unable to release bladder fully constant UTI had test done at hospital unstable bladder, pain in pelvic area continues.
1999 go into hospital for lascospany(cant spell) to clear addisions( scar tissue) from csection find bladder has healed to womb problem cleared.
1999 pregnant with second child suffer with symphysis pubis dysfunction could not walk by the end a lot of pain.Had strange rash appear on legs after being in the sun went in to hospital nothing found.
2000 went 16 days over due only dilated to 3cm c section again spinal block hard to get in but works ok this time.
2000 experience pins and needles in my hands and across my tummy put down to anxiety anti depressants prescribed made no difference pins and needles went from tummy but came and went from hands.
2000 fell pregnant again with third child suffered awful sickness went into hospital twice with it put on drip lost one and half stone. Spd again lots of pain. Went to hospital with awful stabbing pain around the ribs scanned for kidney stones nothing found put
it down to pulled muscle due to being sick all the time.
2001 c section spinal block hard again but worked again. Same fatigue pins and needles anti depressants again.
2002 genital herpes aclovir last two weeks
2002 suffer from mood swings very emotional memory problems prescribed Prozac as said depressed again!!!
2003 genital herpes aclovir prescribed last one week.
2003 left shoulder pain with numb patch on back feels like running water down my back. Doctor prescribes anti inflammory. Pain around ribs again for a week goes off again. Come off anti depressants as not helping.
2004 on off pain in hips when walking. Also develop reflux and awful pain in centre of chest start to have problems swallowing food as it sticks go in for gastro examine camera down to see if any problems just inflammation cant find reason why prescribed ranitidine 150mg stay on these for a while pain goes this problem still goes even now. Burp a lot and reflux comes up stings my throat and makes me hoarse.
2005 take up running as feel so fatigue all the time think exercise will help.start to have knee and hip pain.
2006 referred to a rheumatologist she says I have weakness in my thigh muscle leading the thigh bone to drop onto the patella bone and cause grating. Also had pins and needles in hands and pain she x-rayed my knees and hands, hands clear never got result of knees. Dx hands rhaynauds syndrome.
2006 Nov car accident at 40 mph. don’t have x-ray till next day whiplash low back
pain 3 month treatment. X-ray showed slight deterioration in neck and slight curve to spine. Stopped treatment.
2007 Jan shingle type pain to side of trunk of body unable to touch very painful also around top of leg prescribed aclovir went after a week kept coming back no rash. Suffer at time with constipation again with bad piles.
2007 for a while hot baths had made me weak now it was making symptoms worst also hot weather making it worst.
March 2007 went to chrio for balance problems numbness on back pins and needles in hands and feet shingle nerve type pain face pain pain in eyes over shooting of left eye jerky eyes, memory problems word problems reduced sensation in private parts bladder problems, she treated me and asked my doctor to refer me to a neuro doc as problems she could not treat done eye test and reflexes.
May 2nd see neuro doc order blood test and mri. Suggest sinus x-ray come backed completely blocked prescribed sinus spray.
May 14th come down with relentless muscle spasm after a day of muscle aches and fatigue like that till Thursday see consultant again prescribes amitripline which is increased then changed to lyrica and increased over a short time to 300mg.
June/july bladder problems still present with loss of sensations in private parts, balance problems, painfull feet with changes to shape of foot, eyes jerky again constipation awfull.reflux, rib pain on and off. Tight band feeling around my limbs and arms. Sharp electric type pain in head when bending my head forward. Muscle spasm only occasional muscle twitches in bottom base of spine muscle twitches in legs.
Thanks again for being so quick to write back to me. This site is amazing just to be able to talk to someone who understands and has such a wide knowledge of disorders. Im touched that you give up so much of your time to others.
My feet are hard to discribe, yes i did wear bad shoes!! The left is painfull today it is nerve pain i feel in the foot and around the ankle and i had my bath too hot last night (old habbits die hard) and it made the pain ten times worst lukey it was at night so i just flopped into bed as i felt so weak (my own fault i know) If i put my feet on the floor right by where the arch of my foot is just above there a hard swelling has almost grown it is getting closer to my ankle and spreading up toward my the top of my foot it was not there when i saw the consultant on the 17th of may when i went back for an emergency appointment due to the muscle spasms but the pain was it has grown since then its tender to touch but painfull when i put full pressure with my foot i can not walk fully on it due to the pain and kind of kick my foot out or walk on the side of my foot to avoid the pain i have the same in the right but not as big and not as painfull i have searched high and low and just cant find anything about it, the only thing i can think of is i have damaged the foot by walking oddly on both feet to compensate for my balance and the nerve pain in the feet plus the left often goes dead so i cant feel how i postion it but to be honest i dont walk anywhere cause of the pain 50 yards without crutches and maybe 300 yards with them if i have to, i drop and pick kids up from school i park right by the school then come home i go nowhere!!
The mri that is ordered is a MRI head, and MRI of spine thoracic, lumbar/sacral. It does not say about contrast.
I dont get to keep any of my notes or records though i believe i am able to view them but not walk away with them, my GP has been wonderfull and she let me see the letter he wrote back after my first appointment ( which i only had mild symptoms then and was still working before the muscle spasm came) it said he was looking for inflammation of the central nervous system and said the MRI he had order and had requested all the blood tests i had had.
My chrio had mentioned the shingle type pain i was getting might be damage to my nrevers from the genital herpes virus but my neuro said i was getting to many upper body nerve pain for that, plus i was getting mild symptoms before that.
My doctor wrote and called the consultant to move the scan after the muscle spasms were bad and not controlled by pain killers he said he had thousands of people on his waiting list just as bad as me and it would be unfair to bump me up the list!!( i could see his point) i did look at private but was told it would be £1100 just for the scans and more on top for the consultant so i stuck to the nhs.
I was upset that they could not do some other tests in the mean time to rule out other things he seems all set on this MRI and what if it comes back clear? will he just right me off send me away to cope like this i pray to God he wont not that i want something to show i just want an answer so some treatment can begin does that sound odd?
sorry for going on so much hope i answered your questions.
Hope you are all coping ok on here,
hope you stay in good health Quix
God Bless
My feet are hard to discribe, yes i did wear bad shoes!! The left is painfull today it is nerve pain i feel in the foot and around the ankle and i had my bath too hot last night (old habbits die hard) and it made the pain ten times worst lukey it was at night so i just flopped into bed as i felt so weak (my own fault i know) If i put my feet on the floor right by where the arch of my foot is just above there a hard swelling has almost grown it is getting closer to my ankle and spreading up toward my the top of my foot it was not there when i saw the consultant on the 17th of may when i went back for an emergency appointment due to the muscle spasms but the pain was it has grown since then its tender to touch but painfull when i put full pressure with my foot i can not walk fully on it due to the pain and kind of kick my foot out or walk on the side of my foot to avoid the pain i have the same in the right but not as big and not as painfull i have searched high and low and just cant find anything about it, the only thing i can think of is i have damaged the foot by walking oddly on both feet to compensate for my balance and the nerve pain in the feet plus the left often goes dead so i cant feel how i postion it but to be honest i dont walk anywhere cause of the pain 50 yards without crutches and maybe 300 yards with them if i have to, i drop and pick kids up from school i park right by the school then come home i go nowhere!!
The mri that is ordered is a MRI head, and MRI of spine thoracic, lumbar/sacral. It does not say about contrast.
I dont get to keep any of my notes or records though i believe i am able to view them but not walk away with them, my GP has been wonderfull and she let me see the letter he wrote back after my first appointment ( which i only had mild symptoms then and was still working before the muscle spasm came) it said he was looking for inflammation of the central nervous system and said the MRI he had order and had requested all the blood tests i had had.
My chrio had mentioned the shingle type pain i was getting might be damage to my nrevers from the genital herpes virus but my neuro said i was getting to many upper body nerve pain for that, plus i was getting mild symptoms before that.
My doctor wrote and called the consultant to move the scan after the muscle spasms were bad and not controlled by pain killers he said he had thousands of people on his waiting list just as bad as me and it would be unfair to bump me up the list!!( i could see his point) i did look at private but was told it would be £1100 just for the scans and more on top for the consultant so i stuck to the nhs.
I was upset that they could not do some other tests in the mean time to rule out other things he seems all set on this MRI and what if it comes back clear? will he just right me off send me away to cope like this i pray to God he wont not that i want something to show i just want an answer so some treatment can begin does that sound odd?
sorry for going on so much hope i answered your questions.
Hope you are all coping ok on here,
hope you stay in good health Quix
God Bless
I read your answers. I agree. I don't see why the doc said your hand sensations were Raynaud's Phenomenon. I've not heard of it in conjuction with heat (instead of cold) nor have I heard of it without blood flow/color changes. So it sounds like neuropathy to me...over the internet...and from across the ocean. lol
I'm still stymied by the description of your feet and the way they've become deformed. Were you a slave to pointed-toe shoes? ha ha! Still, I need to do some more reading on the CMT hereditary neuropathies. I do think that is less likely. You are sick all over.
I get so frustrated at the wait you have for needed diagnostic testing. Will your MRI be of the brain and at least the c-spine? If you have to wait so long, they should do the full testing. Can you inquire about what is ordered and whether they will use contrast? Plead for it if necessary.
I'm sure you are emotional! What you are going through is pure h***. I'm sorry. But we will do what we can to make it as understandable and bearable as we can. In the UK can you get copies of your medical info? You might ask the GP for a copy of the Neuro's consult. He didn't mention anything as he examined you, but that doesn't mean he didn't find anything. One school of training, especially with older docs is to remain impassive and not reveal what you find or what you think. I think this is a terrible way to treat people, but it is common (and condescending).
Stay with us, Quix
I'm still stymied by the description of your feet and the way they've become deformed. Were you a slave to pointed-toe shoes? ha ha! Still, I need to do some more reading on the CMT hereditary neuropathies. I do think that is less likely. You are sick all over.
I get so frustrated at the wait you have for needed diagnostic testing. Will your MRI be of the brain and at least the c-spine? If you have to wait so long, they should do the full testing. Can you inquire about what is ordered and whether they will use contrast? Plead for it if necessary.
I'm sure you are emotional! What you are going through is pure h***. I'm sorry. But we will do what we can to make it as understandable and bearable as we can. In the UK can you get copies of your medical info? You might ask the GP for a copy of the Neuro's consult. He didn't mention anything as he examined you, but that doesn't mean he didn't find anything. One school of training, especially with older docs is to remain impassive and not reveal what you find or what you think. I think this is a terrible way to treat people, but it is common (and condescending).
Stay with us, Quix
Thank you so much for spending time on my posting, I will try and answer all your questions the best i can.
Q1 reflexes were absent in my feet (which for some people i think that can be mormal ) but i have always had sensetive feet. The rest she said were slow but when seeing neuro he said nothing and i think reflexes were only absent on feet.
The eye test was following her finger my eye would jut back to the middle inside of following it all the way but again neuro said nothing just flashed light in my eyes.
Q2 re feet my toes have been curled ( like hammers) since i was twenty but this could be poor foot wear. my arch now is more defined the fat pad at the front of my foot by my big toe is smaller but thats true of my hands too. there is a spreading like swelling but not as it is hard it goes along the arch toward the ankle its hard to explain its been that way since the muscle spasms getting more noticable it used to be flat there. i did look into what momzilla said and i dont think it could be that but i dont know plus none of my parents had that i say had as they are dead now mum of breast cancer 1999 and dad 2000 of unknown causes he had neuropathy in his feet he used to put them in ice cold water to reduce pain but he had diabetes which he injected for.my mum had restless leg symdrome.my grandad had parkinsins.
Q3 yes my limbs fall asleep very easily and i wake everyday with them all dead!! that has been happening a while.during the day too if i sit for too long or press on my arm.
Q4 The fatigue had been on and off for a while it would normanlly be after a busy day i would be so tired i had to sleep like i had hit a wall while running and could go no more!! i would sleep or rest and it would pass but in may it started and has never left, it started on the friday about 16th i was fatigued like never before then the muscle aches started i did my shift as noone else could cover ( i am a community support worker.) By the time i had got home i was in agony it started in my limbs then spread everywhere i could not even feed myself it got better by the thursday so i could just about walk but had another bout two weeks later but not as bad they have gone now almost they just come now and again in my legs about six times a day now and i get twitching at the base of my spine on my bottom the top legs and pain in my hips.When i was having them they were like contractions in pregnacy as they came in waves every few seconds then releashed relentless!!
Q5 I have had the loss of sensation for a while but i blamed that on gential herpes ( oh joy) 2002/2003, the not been able to feel the toilet to last min is since jan 2007. My bowels have been awfull i use senna everyday and i go every 5 days but i have no sensation there as to push if that makes sence, my whole tummy feels odd anyway just like my legs and arms like someone has drained them heavy yet not there.
Q6 yes this is like nothing like i have experienced fatigue wise sometimes it is a sleep fatigue sometimes my body just seems fatigued, the heat intolerance started slowly with feeling weak after baths and pins and needles worst now it is the weather too that makes me worst more clumsy fatigue and sypmtoms worst i did mention this to my consultant.
Q7 raynauds cause i had numbness in hands pins and needles and cause i mentioned it got worst after a a hot bath or heat from the oven and was always burning them easily as have reduced feeling in them she said it was raynauds after the xray was clear but i dont have the typical colour changes.
I have been tested for lupus, anemia,diabetes,rheumatoid,thyroid all normal consultant took some blood work to do with the muscles but heard nothing.
I know there is something wrong i have felt different for a while, i have been off sick for six weeks not long but enough to put pressure on my family they need me!!
I just want answers i have been so emotional lately i just want a dx so i can get treated and get on with my life!
Thank you again for your support on here i know you dont have all the answers but i value what you have to say.
hope your well God Bless.
Q1 reflexes were absent in my feet (which for some people i think that can be mormal ) but i have always had sensetive feet. The rest she said were slow but when seeing neuro he said nothing and i think reflexes were only absent on feet.
The eye test was following her finger my eye would jut back to the middle inside of following it all the way but again neuro said nothing just flashed light in my eyes.
Q2 re feet my toes have been curled ( like hammers) since i was twenty but this could be poor foot wear. my arch now is more defined the fat pad at the front of my foot by my big toe is smaller but thats true of my hands too. there is a spreading like swelling but not as it is hard it goes along the arch toward the ankle its hard to explain its been that way since the muscle spasms getting more noticable it used to be flat there. i did look into what momzilla said and i dont think it could be that but i dont know plus none of my parents had that i say had as they are dead now mum of breast cancer 1999 and dad 2000 of unknown causes he had neuropathy in his feet he used to put them in ice cold water to reduce pain but he had diabetes which he injected for.my mum had restless leg symdrome.my grandad had parkinsins.
Q3 yes my limbs fall asleep very easily and i wake everyday with them all dead!! that has been happening a while.during the day too if i sit for too long or press on my arm.
Q4 The fatigue had been on and off for a while it would normanlly be after a busy day i would be so tired i had to sleep like i had hit a wall while running and could go no more!! i would sleep or rest and it would pass but in may it started and has never left, it started on the friday about 16th i was fatigued like never before then the muscle aches started i did my shift as noone else could cover ( i am a community support worker.) By the time i had got home i was in agony it started in my limbs then spread everywhere i could not even feed myself it got better by the thursday so i could just about walk but had another bout two weeks later but not as bad they have gone now almost they just come now and again in my legs about six times a day now and i get twitching at the base of my spine on my bottom the top legs and pain in my hips.When i was having them they were like contractions in pregnacy as they came in waves every few seconds then releashed relentless!!
Q5 I have had the loss of sensation for a while but i blamed that on gential herpes ( oh joy) 2002/2003, the not been able to feel the toilet to last min is since jan 2007. My bowels have been awfull i use senna everyday and i go every 5 days but i have no sensation there as to push if that makes sence, my whole tummy feels odd anyway just like my legs and arms like someone has drained them heavy yet not there.
Q6 yes this is like nothing like i have experienced fatigue wise sometimes it is a sleep fatigue sometimes my body just seems fatigued, the heat intolerance started slowly with feeling weak after baths and pins and needles worst now it is the weather too that makes me worst more clumsy fatigue and sypmtoms worst i did mention this to my consultant.
Q7 raynauds cause i had numbness in hands pins and needles and cause i mentioned it got worst after a a hot bath or heat from the oven and was always burning them easily as have reduced feeling in them she said it was raynauds after the xray was clear but i dont have the typical colour changes.
I have been tested for lupus, anemia,diabetes,rheumatoid,thyroid all normal consultant took some blood work to do with the muscles but heard nothing.
I know there is something wrong i have felt different for a while, i have been off sick for six weeks not long but enough to put pressure on my family they need me!!
I just want answers i have been so emotional lately i just want a dx so i can get treated and get on with my life!
Thank you again for your support on here i know you dont have all the answers but i value what you have to say.
hope your well God Bless.
Wow, you do have a lot going on. The back/neck injury will muddy things up a little, but we will try to sort it out. You have many symptoms that speak of a systemic neurologic disorder like MS and, though of course, we cannot diagnose you with anything (except you do seem quite likeable) I'll be talking to you in the focus of MS and other things I know. Remember I am NOT a neurologist. I have bits and pieces of knowledge from a lot of fields, and more accumulating in the world of demyelinating nerves.
You'll find I have more questions than answers. Lol, that way I can seem very knowing without needing so much knowledge. The first thing I want to ask is, you mentioned your chiro noted "reflexes and vision" and referred you off. What were your reflexes doing? Were you kicking all over the place (hyperactive) or were your reflexes absent? This is pretty important.
The second thing I want to ask about is the "deformity" like a cramp over your arch. Has your foot (feet) been pulled into a deformity by all this? Has there been wasting away of the muscles in the hands or feet? Is the arch of your foot shaped differently now? Can you carefully describe how your feet look different? Also, do you have a family history of neuropathy and problems in the lower legs? The reason is that Momzilla brought up something that could be RIGHT ON. (Go!, Chris!) She mentioned "Marie-Charcot-Tooth" which is a hereditary neuropathy that causes often severe pain and characteristic deformity in the feet. Now, the classic form of MCT disease would not apply to you because you have so much else going on with your upper extremities and the balance and what sound like spasms or spasticity. But, depending on the answer about your reflexes I may have soomething to say about all this, more than 30 variants of MCT have been described. There are many forms of herediatray neuropathy including one that fits something you mentioned. Did you mention (or was it someone else) that your limbs fall asleep easily with slight or brief pressure? If so, is it a common problems in your family - parents, sibs?
By the Way - I am always long-winded, I guess I like to hear myself talk.
Okay, Mid-May you started to feel severely fatigued (something you've had before) and "flu" symptoms. What kind of symptoms? Fever, chills, muscle aches or something else? Do you remember how the spasms progressed? Did they start in the arms or legs? Were they accompanied by muscle weakness then or now? Which groups of muscles are weakest? the ones closer to the feet and hands or the ones next to the trunk (thighs and upper arms)?
How long have you been having the loss of sensation in the perinuem (private area)? That was one of my first symptoms. And how long have you had the loss of early warning that you needed the loo?
Boy! You can see now, how a timeline would be invaluable for putting things together (hint, hint).
Is the fatigue you're having different than fatigue you've had before in your life? And the intolerance to heat - When did that start?
Did you say that after the last two pregnancies you had symptoms of fatigue and pins and needles (where?) How long did those two symptoms last after each delivery?
You do have very suggestive symptoms that are consistent with MS (and other things). If you would be so kind as to answer my (numerous) questions, I might have even more to say. I'm glad you're here. If nothing else, we'll keep you occupied making a timeline (see the timeline tutor, Donna (Wanna)) Do not despair about the MRI being old. The vast majority of people running around with diagnoses got them on the old machines. There's just a subset of people whose lesions are tiny and more difficult to image.
Second, we know you don't want MS or any disease. But, you know something is terribly wrong with your body. And we all know that knowing is much better than NOT knowing what it is. So we understand that what you want is information and answers not "a disease."
I agree with what everybody above has stated and suggested. You do need help with the pain. You definitely need nerve and muscle studies to help tease out what part the car accident might be playing. You need basic blood work up for electrolytes and autoimmune. Why did the rheumatologist think you have Raynaud's? What were your hands doing and what made them do it?
I'll be looking for your answers.
Welcome again, Quix
You'll find I have more questions than answers. Lol, that way I can seem very knowing without needing so much knowledge. The first thing I want to ask is, you mentioned your chiro noted "reflexes and vision" and referred you off. What were your reflexes doing? Were you kicking all over the place (hyperactive) or were your reflexes absent? This is pretty important.
The second thing I want to ask about is the "deformity" like a cramp over your arch. Has your foot (feet) been pulled into a deformity by all this? Has there been wasting away of the muscles in the hands or feet? Is the arch of your foot shaped differently now? Can you carefully describe how your feet look different? Also, do you have a family history of neuropathy and problems in the lower legs? The reason is that Momzilla brought up something that could be RIGHT ON. (Go!, Chris!) She mentioned "Marie-Charcot-Tooth" which is a hereditary neuropathy that causes often severe pain and characteristic deformity in the feet. Now, the classic form of MCT disease would not apply to you because you have so much else going on with your upper extremities and the balance and what sound like spasms or spasticity. But, depending on the answer about your reflexes I may have soomething to say about all this, more than 30 variants of MCT have been described. There are many forms of herediatray neuropathy including one that fits something you mentioned. Did you mention (or was it someone else) that your limbs fall asleep easily with slight or brief pressure? If so, is it a common problems in your family - parents, sibs?
By the Way - I am always long-winded, I guess I like to hear myself talk.
Okay, Mid-May you started to feel severely fatigued (something you've had before) and "flu" symptoms. What kind of symptoms? Fever, chills, muscle aches or something else? Do you remember how the spasms progressed? Did they start in the arms or legs? Were they accompanied by muscle weakness then or now? Which groups of muscles are weakest? the ones closer to the feet and hands or the ones next to the trunk (thighs and upper arms)?
How long have you been having the loss of sensation in the perinuem (private area)? That was one of my first symptoms. And how long have you had the loss of early warning that you needed the loo?
Boy! You can see now, how a timeline would be invaluable for putting things together (hint, hint).
Is the fatigue you're having different than fatigue you've had before in your life? And the intolerance to heat - When did that start?
Did you say that after the last two pregnancies you had symptoms of fatigue and pins and needles (where?) How long did those two symptoms last after each delivery?
You do have very suggestive symptoms that are consistent with MS (and other things). If you would be so kind as to answer my (numerous) questions, I might have even more to say. I'm glad you're here. If nothing else, we'll keep you occupied making a timeline (see the timeline tutor, Donna (Wanna)) Do not despair about the MRI being old. The vast majority of people running around with diagnoses got them on the old machines. There's just a subset of people whose lesions are tiny and more difficult to image.
Second, we know you don't want MS or any disease. But, you know something is terribly wrong with your body. And we all know that knowing is much better than NOT knowing what it is. So we understand that what you want is information and answers not "a disease."
I agree with what everybody above has stated and suggested. You do need help with the pain. You definitely need nerve and muscle studies to help tease out what part the car accident might be playing. You need basic blood work up for electrolytes and autoimmune. Why did the rheumatologist think you have Raynaud's? What were your hands doing and what made them do it?
I'll be looking for your answers.
Welcome again, Quix
Hi Quix,
Thanks for getting back to me even though it is late where you are. They are a fantastic buch of people on here so supportive of each other! I know your busy and your health is not good at the moment but i would really value your opinion on what you think is going on in my body!! Im pinning all my hopes on my MRI on the 14th August after waiting three months for it but i hear form a friend who works in the hospital that it is an old machine so by reading some of the post on here these do not show the whole story so now i am worried i still wont get any anwers.!!
i will look forward to reading what you think. God Bless
Thanks for getting back to me even though it is late where you are. They are a fantastic buch of people on here so supportive of each other! I know your busy and your health is not good at the moment but i would really value your opinion on what you think is going on in my body!! Im pinning all my hopes on my MRI on the 14th August after waiting three months for it but i hear form a friend who works in the hospital that it is an old machine so by reading some of the post on here these do not show the whole story so now i am worried i still wont get any anwers.!!
i will look forward to reading what you think. God Bless
Welcome to our haven of the undiagnosed, the misdiagnosed and the ticked off, but diagnosed on the other side of the pond. We've had lots of visitors from the UK. I want to read all your posts carefully and maybe tomorrow add some thought. You've already heard fro a bunch. This is one of the greatest group of people you will ever meet, especially when it comeas to being stumped about what is going wrong with your body.
Be back tomorrow. Uh...later today. I'm on the Left Coast so it's just midnight. Quix
Be back tomorrow. Uh...later today. I'm on the Left Coast so it's just midnight. Quix
Hi,
Thank-you for sharing your story with me, so sorry for what you have been through and great you recovered enough to run again wow!
I miss running i never ran like you but just five miles a day cross country with my dogs while my children were at school. I started running in Jan 2005 by Jan 2006 i was seeing a rheumatoligist (cant spell) as i had awfull pains in my knees stopping me from walking far and going up and down stairs was agony, she said i had weakness in my thigh muscle leading to my thigh bone to drop onto my pattella bone and grate!! i also mentioned my hands at the time being pins and needles she xrayed them and my knees my hands were clear never got full results from knees as moved away, she said my hands were rhaynards symdrome but since my doctor thinks not.I had physio for my knees which seemed to help since then the problem has returned.
I had three c sections with my children none went that well and had pelvic/pubic problems with the last two and the last two brought on pins and needles and fatigue. If none of these things had gone on before my car accident i would put it down to this but i have had on off problems for three years and more if you count the mild symptoms after my last two pregnacy's so many reflux ibs muscle weakness balance problems numbness bladder and bowel problems of recent and muscle spasms feet different and painfull,memory problems, words muddled, ringing in ears,blurred vision eye shooting off to right cant control.warm/cold sensations up and down my legs, fatigue I also have blocked sinues which xray showed which cause headaches and face pain and ringing in my ears.
I feel i am coming out of this now but i still cant move past this point!
I hope you get answers soon oncetri too. God Bless.
Thank-you for sharing your story with me, so sorry for what you have been through and great you recovered enough to run again wow!
I miss running i never ran like you but just five miles a day cross country with my dogs while my children were at school. I started running in Jan 2005 by Jan 2006 i was seeing a rheumatoligist (cant spell) as i had awfull pains in my knees stopping me from walking far and going up and down stairs was agony, she said i had weakness in my thigh muscle leading to my thigh bone to drop onto my pattella bone and grate!! i also mentioned my hands at the time being pins and needles she xrayed them and my knees my hands were clear never got full results from knees as moved away, she said my hands were rhaynards symdrome but since my doctor thinks not.I had physio for my knees which seemed to help since then the problem has returned.
I had three c sections with my children none went that well and had pelvic/pubic problems with the last two and the last two brought on pins and needles and fatigue. If none of these things had gone on before my car accident i would put it down to this but i have had on off problems for three years and more if you count the mild symptoms after my last two pregnacy's so many reflux ibs muscle weakness balance problems numbness bladder and bowel problems of recent and muscle spasms feet different and painfull,memory problems, words muddled, ringing in ears,blurred vision eye shooting off to right cant control.warm/cold sensations up and down my legs, fatigue I also have blocked sinues which xray showed which cause headaches and face pain and ringing in my ears.
I feel i am coming out of this now but i still cant move past this point!
I hope you get answers soon oncetri too. God Bless.
I don't know yet about an autoimmune disease. I don't have a diagnosis as of yet. Probably best to tell you my full story, abreviated of course.
I had a severe car accident in Jan of '04. I had been paralyzed a few days, mabye even a week, depending on how you define paralysis. I couldn't walk for a few days, but then afterwards, I could only move my legs one inch and couldn't lift my arms and had to sit after an hour because my head felt heavy. I did do a lot of damage to my back. I too felt nothing at the time of the accident and they didn't even do an x-ray at the hosptial, sent me home with pain killers and muscle relaxers. The next day, when I woke up, I couldn't move from the neck down. I did three months of intense therapy/chiropractics/massage and felt much better. They stopped treatment, leaving me with scoliosis and minor problems, but so much less severe. I think I ingnored them because I was just so happy I could run again.
I ran again, I ran 2 marathons, 2 half-iron triathlons, and 3 sprint triathlons. I felt like I was in great shape. I actually started seeing a new chiropractor when I moved back home and got into triathlons. I met her at a cycling clinic and became a patient with the intent of fixing my posture. One for self-concious reasons (I'm a young girl and was touchy on how my back looked, I had a slighy hump from slouching because I couldn't stand straight without pain) and the other for improving my cycling times.
Then I got pregnant. Pregnancy went well, but the labor/delivery was a nightmare. I had 14 hours of back labor including 2 and half hours of pushing. Baby was not progressing and they performed an emergency c-section. IT was after all of this that my neurological symptoms became apparent. The tingling and numbness. My chiropractic physician was one of the first doctors to help find me a referral to a neurologist. She was the first to say this problem was not just from recovering and something is systemically wrong. Through the neurologist and my chiropractor's personal research on my case, I've found that it is possible that I have two conditions, one from recovery from car accident/spinal memory/c-section problems, and one that might be autoimmune. Since the tests have been inconclusive as of yet, I'm left without a diagnosis.
All I can say is, that my chirpractor was dead on. The neurologist I see has taken me seriously and seems to be trying to find a diagnosis and willing to work with several other doctors and look into possibilities that I've researched. He even listens to some of the findings my chiropractor has told me, and a lot of doctors don't take chiropractics seriously, so I feel like I'm with the right people to try to help me.
Good luck, I hope you start to feel better and get back to work.
I had a severe car accident in Jan of '04. I had been paralyzed a few days, mabye even a week, depending on how you define paralysis. I couldn't walk for a few days, but then afterwards, I could only move my legs one inch and couldn't lift my arms and had to sit after an hour because my head felt heavy. I did do a lot of damage to my back. I too felt nothing at the time of the accident and they didn't even do an x-ray at the hosptial, sent me home with pain killers and muscle relaxers. The next day, when I woke up, I couldn't move from the neck down. I did three months of intense therapy/chiropractics/massage and felt much better. They stopped treatment, leaving me with scoliosis and minor problems, but so much less severe. I think I ingnored them because I was just so happy I could run again.
I ran again, I ran 2 marathons, 2 half-iron triathlons, and 3 sprint triathlons. I felt like I was in great shape. I actually started seeing a new chiropractor when I moved back home and got into triathlons. I met her at a cycling clinic and became a patient with the intent of fixing my posture. One for self-concious reasons (I'm a young girl and was touchy on how my back looked, I had a slighy hump from slouching because I couldn't stand straight without pain) and the other for improving my cycling times.
Then I got pregnant. Pregnancy went well, but the labor/delivery was a nightmare. I had 14 hours of back labor including 2 and half hours of pushing. Baby was not progressing and they performed an emergency c-section. IT was after all of this that my neurological symptoms became apparent. The tingling and numbness. My chiropractic physician was one of the first doctors to help find me a referral to a neurologist. She was the first to say this problem was not just from recovering and something is systemically wrong. Through the neurologist and my chiropractor's personal research on my case, I've found that it is possible that I have two conditions, one from recovery from car accident/spinal memory/c-section problems, and one that might be autoimmune. Since the tests have been inconclusive as of yet, I'm left without a diagnosis.
All I can say is, that my chirpractor was dead on. The neurologist I see has taken me seriously and seems to be trying to find a diagnosis and willing to work with several other doctors and look into possibilities that I've researched. He even listens to some of the findings my chiropractor has told me, and a lot of doctors don't take chiropractics seriously, so I feel like I'm with the right people to try to help me.
Good luck, I hope you start to feel better and get back to work.
oncetri, do you have a automune disease as well as being treated for your car accident? did you have damage to your head or back? I think i was heading for something for a long time things had not been right but i ignored them so busy with family and work i think my chriopractor just picked something up that was already there who knows. Iv been off sick for 6 weeks now and just been signed off for another 8 weeks i worked for an agency so only get goverment sick pay which is awfull, i hope i get back to work soon. hope you well.
Thank you all so much for your quick answers its so nice to be welcomed! you are all so well informed i feel like im crawling around in the dark sometimes! The symptoms have been mild till jan this year when they got bad enough to see a chripractor its only then when i had to give a heatlh list and talk about what had been going on in the last few years that she refered me. After the crash in 2006 i never went to hospital though was offered by the police but the next day i had xrays done by a chripractor as was in agony i had whiplash and lower back pain i was treated for 3 months and felt better they noticed a slight curve in my spine and neck and degeneration in the cartilage (cant spell) i stopped treatment as i felt better and it was expensive.I had no more symptoms till Jan 2007.
I feel my legs are getting stronger and im not sure if it is the medication that has helped stop the muscle spasms or they have stoped by themself but i am so glad i just get the odd one and a jerk a few times a day now just in my legs left the worst and more when im tired. I seem to be stuck at this point now my feet just dont look like they used to and are painfull and the ankles so weak and both full of pins and needles. i have gone on abit again sorry, its just so great to talk to others who know how i feel. Thank you once again for sharing with me. Hope Quix gets better soon.
I feel my legs are getting stronger and im not sure if it is the medication that has helped stop the muscle spasms or they have stoped by themself but i am so glad i just get the odd one and a jerk a few times a day now just in my legs left the worst and more when im tired. I seem to be stuck at this point now my feet just dont look like they used to and are painfull and the ankles so weak and both full of pins and needles. i have gone on abit again sorry, its just so great to talk to others who know how i feel. Thank you once again for sharing with me. Hope Quix gets better soon.
Hi, I'm sorry to hear about your accident.
I have been under the care of a chiropractic physician for over 2 years now, resulting from a car accident four years ago (though I continue to see her for new smptoms). Something she said to me rings a bell with you "You are allowed to have more than one condition." Maybe the car accident caused some of the symptoms, and the others might not be related at all. I did notice that you said symptoms were over the last three years. Being the accident was in 2006, that's not three years, so maybe the chiropractor took note of this too.
From working with my chiropractor, I'm learning some of the limits of their education. Maybe they felt that you had more conditions than they could handle (which I agree with) and they refered you to a professional they felt could better handle your case or be more apt to help you. The neuro would be better able to differentiate what was the car accident and what might be an autoimmune condition.
Good luck.
I have been under the care of a chiropractic physician for over 2 years now, resulting from a car accident four years ago (though I continue to see her for new smptoms). Something she said to me rings a bell with you "You are allowed to have more than one condition." Maybe the car accident caused some of the symptoms, and the others might not be related at all. I did notice that you said symptoms were over the last three years. Being the accident was in 2006, that's not three years, so maybe the chiropractor took note of this too.
From working with my chiropractor, I'm learning some of the limits of their education. Maybe they felt that you had more conditions than they could handle (which I agree with) and they refered you to a professional they felt could better handle your case or be more apt to help you. The neuro would be better able to differentiate what was the car accident and what might be an autoimmune condition.
Good luck.
See, that's what I'm talking about! Thanks, Lynn! = )
I really wish you didn't have so much first hand knowledge of all this, but thanks so much for sharing!
Chris*
I really wish you didn't have so much first hand knowledge of all this, but thanks so much for sharing!
Chris*
Don't stop the lyrica before the mri,it will have no bearing as to taking it,plus this is not a med you abrubtly stop.
Spasms,painful little muscle contractions that can be relentless.This is my least favorite MS symptom.I have them in both legs.Could be classified as spasticity,but I'll leave that to your neuro.As many disorders can cause muscle spasms,for instance lack of potassium.
Some of your symptoms are definatly neurological in nature.Its not impossible to have more than one disorder occuring,some of this could be residual effects from the car accident.
The romberg teat and the overshooting of the eyes does indicate a neurological deficit.
The MRI's are a good start,but hopefully your neuro will have an EMG/NCS done to test the nerves and muscles for disorders as radiculopathy,polyradiculopthy and cipd.All of these are outside the spine as MS is central nerveous system inside the spine.
The tight banding could be reffered to as a MS hug and can occur in the torso or limbs.
Your neuro seems to be on the right path.You should keep a journal and write down your symptoms,when they occurred,how long they lasted ,if anything brought them on,stress ,heat and so forth.
Welcome to our forum.
Spasms,painful little muscle contractions that can be relentless.This is my least favorite MS symptom.I have them in both legs.Could be classified as spasticity,but I'll leave that to your neuro.As many disorders can cause muscle spasms,for instance lack of potassium.
Some of your symptoms are definatly neurological in nature.Its not impossible to have more than one disorder occuring,some of this could be residual effects from the car accident.
The romberg teat and the overshooting of the eyes does indicate a neurological deficit.
The MRI's are a good start,but hopefully your neuro will have an EMG/NCS done to test the nerves and muscles for disorders as radiculopathy,polyradiculopthy and cipd.All of these are outside the spine as MS is central nerveous system inside the spine.
The tight banding could be reffered to as a MS hug and can occur in the torso or limbs.
Your neuro seems to be on the right path.You should keep a journal and write down your symptoms,when they occurred,how long they lasted ,if anything brought them on,stress ,heat and so forth.
Welcome to our forum.
Hi, uk2! Welcome to the forum!
It's great to have another friend from the other side of the pond! I've hesitated writing you, hoping our resident expert, Quix, would be back and be able to address you, but she's not feeling well. I didn't want you to feel neglected, so I'm going to give this my best shot.
WOW! A MVA at 40 MPH! Must have hurt! I'm sorry that happened. I'm glad you survived. It's interesting that your doctor finds that your symptoms are not caused by your accident. I use the word interesting WAY too much. I do find it fascinating, though, that they have a way of deducing that. Maybe because of the places in the head that were injured? Does it matter in a closed head injury? I don't know...(Did you have imaging done right after the accident?)
It sounds like you failed the Romberg test, the falling over with your eyes closed. And I know from my own experience just recently that the overshooting is 'dysmetria.' Don't fully know the relevance, but it may have to do with a injury or lesion in the cerebellum, if I'm doing my obsessive reading properly. I won't bore you with the story of how I know that, but I understand what you mean by overshooting. (If you ask me nice I'll tell you! No, I'm kidding--We Americans aren't as cruel as you may have heard!)
Anyway, your symptoms sure are many and a mixed bag. Some sure seem like MS, but some remind me of this one Something-Something-Tooth Disorder. The arches of your feet made me think of it. It's named after the docs that 'discovered' it. That is a peripheral nerve disorder, I think. I don't know that it would cause so many autoimmune symptoms like fatigue like you describe.
The genitourinary symptoms you describe can be common in MS, as well. So can the exacerbation of symptoms in heat, due to weather or hot baths. Constipation can also be a problem.
The spasms you mention could be spasticity. I'm not sure though. They're usually on one side. This is where I really could use the help of someone with a lot more experience. An MRI would make a lot of sense to me. If your doc has ordered it, of course do it. And I wouldn't ever stop a medication without first consulting your doctor. I looked online a bit about Lyrica interfering with MRI results. There was nothing about that that I could see.
Now that I've completely confused you and not properly answered any of your questions, I'm going to leave you for Quix, our resident expert. She's been feeling under the weather, and will return just as soon as she's well. I didn't want you to think we didn't care about you, uk2.
Please don't stop your medication, though, without talking to your doc. I'm sure he would have instructed you to stop it if it interfered with the MRI!
Good luck and feel well!
Christina*
It's great to have another friend from the other side of the pond! I've hesitated writing you, hoping our resident expert, Quix, would be back and be able to address you, but she's not feeling well. I didn't want you to feel neglected, so I'm going to give this my best shot.
WOW! A MVA at 40 MPH! Must have hurt! I'm sorry that happened. I'm glad you survived. It's interesting that your doctor finds that your symptoms are not caused by your accident. I use the word interesting WAY too much. I do find it fascinating, though, that they have a way of deducing that. Maybe because of the places in the head that were injured? Does it matter in a closed head injury? I don't know...(Did you have imaging done right after the accident?)
It sounds like you failed the Romberg test, the falling over with your eyes closed. And I know from my own experience just recently that the overshooting is 'dysmetria.' Don't fully know the relevance, but it may have to do with a injury or lesion in the cerebellum, if I'm doing my obsessive reading properly. I won't bore you with the story of how I know that, but I understand what you mean by overshooting. (If you ask me nice I'll tell you! No, I'm kidding--We Americans aren't as cruel as you may have heard!)
Anyway, your symptoms sure are many and a mixed bag. Some sure seem like MS, but some remind me of this one Something-Something-Tooth Disorder. The arches of your feet made me think of it. It's named after the docs that 'discovered' it. That is a peripheral nerve disorder, I think. I don't know that it would cause so many autoimmune symptoms like fatigue like you describe.
The genitourinary symptoms you describe can be common in MS, as well. So can the exacerbation of symptoms in heat, due to weather or hot baths. Constipation can also be a problem.
The spasms you mention could be spasticity. I'm not sure though. They're usually on one side. This is where I really could use the help of someone with a lot more experience. An MRI would make a lot of sense to me. If your doc has ordered it, of course do it. And I wouldn't ever stop a medication without first consulting your doctor. I looked online a bit about Lyrica interfering with MRI results. There was nothing about that that I could see.
Now that I've completely confused you and not properly answered any of your questions, I'm going to leave you for Quix, our resident expert. She's been feeling under the weather, and will return just as soon as she's well. I didn't want you to think we didn't care about you, uk2.
Please don't stop your medication, though, without talking to your doc. I'm sure he would have instructed you to stop it if it interfered with the MRI!
Good luck and feel well!
Christina*
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