please help me getting nowhere with doc for over 7 year

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please help me getting nowhere with doc for over 7 year

Postby sickofthepain » Mon Mar 31, 2014 11:09 am

sorry for this long long story but i'm at my wits end................at a young age (about 18) i had a trapped nerve,i couldnt walk,lift leg or anything for over 2 year,i had 3 epidurals,spinal blocks,had a cast pot from my waist up to my neck,i also spent months in hospital on traction at different times,i was told it was a trapped nerve(sciatica).I eventually recovered but over the next 20yr i would suffer from a really bad back which would occur for no reason and would have me bed ridden for weeks on end,this would happen every couple of years then every couple of month,in the end i lost my job due bad time keeping..then 7 year ago i also started getting really bad pain in my foot,it was agony like someone was ripping the veins out my big toe,it was so bad i couldnt stand even the bed sheets on my toe,i was having night sweats were i would have to get up and wash the bedding 2 or 3 times a night i was that soaked(normally i'm not a sweaty person)i was going the toilet 27 times a night for wee wee's,i went the docs,they sent me for an ultrasound on my foot,it eventually i was diagnosed with reynauds disease,over the next 5 year my toe was just numb and i could hardly walk on my feet,my feet felt like they were on fire,i am attending the pain clinic and they sent me for yet another epidural,this epidural did stop the the numbness in my toe but the pain came back with a vengence and has never stopped,then as if i havent got enough problems i started getting really bad neck pain,so bad that i cant even move my neck or turn my head,this has been happing to me constant over the last few year,sorry for the such a long story but also over the last 7 year since my foot start i have been going numb along my side of my chest,which causes me stress,my feet would feel like i'm walking on water,all squidgy or they would feel like i was walking on crushed glass,for years the docs have fobbed me off telling me its anxiety,when i knew it wasnt because it was happening to me,things got so bad at xmas 2013,i couldnt walk on my feet due to the crushing glass,i started getting pins and needles in my arms and hands,tingling feelings like electricity flowing through my top half of body,it also felt like i had a mobile fone vibrating in my pocket all the time,went docs again and i was finally sent me for a brain scan as he suspected parkinsons disease,the scan came back 2 month a go and i was told i have several cysts and spotting on my brain,thats all i know because thats all i have been told,i have a neuro appointment in may 2014,,it doesnt stop there only 3 weeks agon i started getting horrible eyeball pain,that hurt so Bad.,went bad the docs they said a trapped nerve,but now i have gone blind on a couple of times,not a dark blind,like a grey cloud and it only lasts a couple of minutes,i get nerve pain allover my face and feels like it goes numb,when i close my eyes 1 still feels like its left open,i am getting pain all over by body,hands,knuckles even in my legs and struggling with everyday things,what is wrong with me and please dont say stress and get more stress and anxiety through getting told this,,please has anyone else had these symtoms
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Re: please help me getting nowhere with doc for over 7 year

Postby jimmylegs » Mon Mar 31, 2014 11:48 am

hey there
welcome to the forum and sorry to hear you've having such a nasty go of it :S

my own experience isn't similar, but there will likely be others here who can relate :)

question: considering your pain and other symptoms, as well as the possible stress/anxiety element, have any docs so far ordered any nutrition testing? if so, do you have your own copy of results? have you been referred to a nutrition specialist at all? has anyone asked you for a food/fluids/supplements/meds journal? do *you* think could there be any reason to suspect a nutritional connection to your symptoms?

might be an idea to try to rule that potential aspect out at a minimum.

hope you find some answers soon!
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Re: please help me getting nowhere with doc for over 7 year

Postby bartman » Mon Mar 31, 2014 1:55 pm

Educate yourself on the most controversial disease in the history of medicine on just about all facets of the disease- Lyme disease and coinfections- Bartonella and Babesia. Sounds like a textbook case with the night sweats, pain in foot and eye pain. Read Dr. Burrascano's Guidelines by googleing for them. Find a LLMD a lyme literate doctor. Hope this helps and leads you in the right direction. The steroid/epidermal make you worse because they suppress the immune system. My cousin misdiagnosed with MS 13 years before we discovered these infections, mainstream drs. wont acknowledge these infections because they are afraid of losing there medical licenses. Learn about them and then get on antibiotics asap and persevere thru the herxheimer reactions.
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Re: please help me getting nowhere with doc for over 7 year

Postby lyndacarol » Tue Apr 01, 2014 8:55 am

sickofthepain wrote:sorry for this long long story but i'm at my wits end................at a young age (about 18) i had a trapped nerve,i couldnt walk,lift leg or anything for over 2 year,i had 3 epidurals,spinal blocks,had a cast pot from my waist up to my neck,i also spent months in hospital on traction at different times,i was told it was a trapped nerve(sciatica).I eventually recovered but over the next 20yr i would suffer from a really bad back which would occur for no reason and would have me bed ridden for weeks on end,this would happen every couple of years then every couple of month,in the end i lost my job due bad time keeping..then 7 year ago i also started getting really bad pain in my foot,it was agony like someone was ripping the veins out my big toe,it was so bad i couldnt stand even the bed sheets on my toe,i was having night sweats were i would have to get up and wash the bedding 2 or 3 times a night i was that soaked(normally i'm not a sweaty person)i was going the toilet 27 times a night for wee wee's,i went the docs,they sent me for an ultrasound on my foot,it eventually i was diagnosed with reynauds disease,over the next 5 year my toe was just numb and i could hardly walk on my feet,my feet felt like they were on fire,i am attending the pain clinic and they sent me for yet another epidural,this epidural did stop the the numbness in my toe but the pain came back with a vengence and has never stopped,then as if i havent got enough problems i started getting really bad neck pain,so bad that i cant even move my neck or turn my head,this has been happing to me constant over the last few year,sorry for the such a long story but also over the last 7 year since my foot start i have been going numb along my side of my chest,which causes me stress,my feet would feel like i'm walking on water,all squidgy or they would feel like i was walking on crushed glass,for years the docs have fobbed me off telling me its anxiety,when i knew it wasnt because it was happening to me,things got so bad at xmas 2013,i couldnt walk on my feet due to the crushing glass,i started getting pins and needles in my arms and hands,tingling feelings like electricity flowing through my top half of body,it also felt like i had a mobile fone vibrating in my pocket all the time,went docs again and i was finally sent me for a brain scan as he suspected parkinsons disease,the scan came back 2 month a go and i was told i have several cysts and spotting on my brain,thats all i know because thats all i have been told,i have a neuro appointment in may 2014,,it doesnt stop there only 3 weeks agon i started getting horrible eyeball pain,that hurt so Bad.,went bad the docs they said a trapped nerve,but now i have gone blind on a couple of times,not a dark blind,like a grey cloud and it only lasts a couple of minutes,i get nerve pain allover my face and feels like it goes numb,when i close my eyes 1 still feels like its left open,i am getting pain all over by body,hands,knuckles even in my legs and struggling with everyday things,what is wrong with me and please dont say stress and get more stress and anxiety through getting told this,,please has anyone else had these symtoms


Welcome to ThisIsMS, sickofthepain. Some of your symptoms are similar to mine – I have tingling and numbness in my extremities. I have the diagnosis of MS; this may not be the reason for your symptoms, but it should be considered.

Who are these doctors you are seeing? Is it possible that the "trapped nerve" was a misdiagnosis? In my opinion, you need to start over with a good GP or internist, someone who is compassionate and enjoys being a "disease detective." I suspect that you have seen a neurologist and your problems have been "locked" into neurology. Too often, a specialist will only consider a patient's problems fall within his area of specialty. I have read: "doctors are experts in, and only test for, those parts of the body in which they specialize."

Doctors of Functional Medicine seek to find the root of the problem, rather than simply treat the symptoms.

I have no medical background, but suggest that you work with your GP and consider the following recommendations from the University of Chicago (Numbness/pain in the toes, feet and the "pins and needles" in your arms and hands are classic descriptions of peripheral neuropathy.):

http://peripheralneuropathycenter.uchic ... #bloodtest

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels (Nutrient deficiencies, such as B12 and others, can cause "neurological" symptoms.)
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test (A separate "fasting blood insulin test" is a good idea, in my opinion.)
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (Wheat/gluten sensitivity can also manifest as "neurological" symptoms.)
Lyme disease
HIV/AIDS
Hepatitis C and B


All the best to you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: please help me getting nowhere with doc for over 7 year

Postby sickofthepain » Tue Apr 01, 2014 10:03 am

thanks for the comments,,my doctor sent me for a brain scan suspecting ms(after 7year of telling them something was wrong with me) the brain scan came back that i had 3 cysts,white fluid and spotting,that is all i know and all ive been told,now i am left in limbo as my symptoms get worse untill i go to my 1st neurologist appointment on the 8th of may,,personally i think i have something called periperhal neuropathy but all my symptoms add upto ms,often get the ms hug and relapses with new symtoms,optic neutis my latest
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Re: please help me getting nowhere with doc for over 7 year

Postby Scott1 » Tue Apr 01, 2014 11:03 am

I agree with all the ideas but pay particular attention to Bartmans comments. Also check for opportunistic infections of mycoplasmas and rickettsia.
Do you have fatigue or just pain? If so, how would you describe it?

Regards
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