No end in sight.

[sido48]

Hi guys,i am a 67 year old male,i am into my 6th year and 3 neurologists,3 MRI`s lower back ,neck, head, lumbar puncture,umteem electrical tests,now number 3 neuro guy has sent me back to number 2,still no diagnoses,off any of them ,the main problem is they don't listen to what your telling them,my story starts in 1973,i was in a car crash in which I broke my left leg in 3 places,i was in full lenth plaster till 1977,bone grafts plates ,my leg ended up half inch short,being young and daft never got shoe built up,so walked around limping for about 15 years,never got back to full fitness ,constant bad backs,finally saw a physio,and of course said get your shoe built up,I did and no more bad backs, but the one thing I never thought of,is walking in my house, never see built up slipper, as you can imagine I have muscle wastage on my left side,so its a fair bet I have lower back wastage,on my left,,well fast forward to 2010,reported to my doctor that I was getting pins and needles in my Right foot, with numbness,on my foot,she got an appointment with neurology dept,by the time the appointment came through,the symptoms had spread to my Left foot,with burning calves,worst still my butt is burning and swollen,my little toes,feel like someone is trying to cut them off with cheese wire,and all these thing are made worse by sitting,so I have spent the last 5+ years lying on my bed on my stomach ,or on my Left side,as this gives some relief, lying on my back or right side brings the symptoms back,, makes no difference if I sit on a hard or soft surface, standing is also a problem, my driving is limited to short runs, feet go mental because of sitting, ,I roll in bed when asleep ,as it hard to sleep on your stomach too long,sometimes when I walk it feels like I have a soft ball between my legs i have told this story dozens of times to these guys,the first guy said well carry a soft pillow around for 6 months ,if its no better come back and see me,DUH, they don't listen,the first MRI was 2011,lower lumbar,it came back no sciatic compression,the cervical MRI in 2013,showed a little bit of nerve compression at 5/6/7.though it doesen`t seem to bother me,the 3rd was head ,this was to rule out MS,and other diseases,, well it`s Aug 2015,and after waiting 10 months for my last appointment,and getting 20 mins with number 3,he`s sending me back to number 2,all poo hared the idea it lower pelvic disfunction ,what I have been saying since 2010,THEY JUST DONT LISTEN,Thanks for reading any thoughts welcome,Colin

[jacquieb Volunteer]

Hi Colin, SIJD shouts at me... osteopath and chiropractor can help you or at least try. I have SIJD too and was told that my left leg was longer than the right. My issues are a little different from yours. Give them a go...jx

[sido48 in reply to jacquieb]

Hi Jacquieb,thanks for your reply ,I did try a Chiropractor a couple of years ago ,but he did not have the knowledge of these conditions,i was thinking PNE, so I was thinking of Mr Taylor in Edinburgh,who comes highly recommended,and ticks all the boxes for lower lumbar/pelvic floor dysfunction,but I am 67,and the stress of this condition,is taken it toll on me,i know find after a scan that I have a AAA, at 3.8,this killed my sister inlaw two years ago,so not sure what to do ,thanks again for your support.Colin

[Shanellope93]

Hi Colin. My symptoms are different but where we are the same is in the way that it progressed from a musculoskeletal problem caused by trauma, to severe pain and nerve issues from the back to the feet. One thing that I have learned is that all of our musculoskeletal system is connected and when there is a problem in one area it starts to spread throughout. And the soft tissue that holds it all together is a big part of the problem. It becomes unhealthy (tense and hard)and it effects the vascular and nervous systems. All of which didn't show up in imaging. I found a fantastic soft tissue specialist who uses manual manipulation of the tissues and musculoskeletal system to help release their painful holds and the nerves that have become entrapped. He has helped me tremendously but it has taken a long time (I think I've been seeing him for 3 years now). Chiropractic ment helped me. I would suggest looking up soft tissue manipulation (some physiotherapists can be educated in this )..It seems that these forums tend to be UK based so I don't know of anyone there. I'm on the west coast of the US. Good luck.

[Pepper1977]

Did you get MRI of sacrum? Do you have any tarlov cysts? Dr Donlin Long in Baltimore MD will read your films and call you also Dr Clavel in Barcelona

[mdonohue169]

I've been through all you are talking about and feel completely hopeless. This network is not helping out at all. My last visit with a new neurologist ended up with "take one Enteric aspirin per day and 1 Colace 3x a day." Thank god for my primary but his hands are tied. All I'm learning is that once they destroy your nerves in the pelvis they are going to send you away with pat answers and advice that you have taken for years without it working. Truth is doctors these days DON'T CARE unless a simple test gives them a diagnosis and they can prescribe a simple but expensive pill. I hope you find something and I am becoming also totally hopeless.

[Shanellope93]

backandneck.about.com/od/ba...

This information is worth reading. I'm learning how common this is and how must doctors can not diagnose or treat which is how we keep getting referred to specialists or handed pills without ever getting an explanation for the pain, or treatment. I believe that manipulation of the musculoskeletal system is a big part of the treatment. If you have had everything ruled out by years and scans and still suffer I suggest seeking out someone who treats myofacial pain. Rolphing I believe is one technique, but I hear it has its limits.

Scans do not show how the soft tissue is compressing nerves. It can all be caused by misalignment of the skeletal system from injury or trauma which needs to be addressed, such as your leg length discrepancies, but the soft tissue holds us in poor posture exacerbating the problem.

I hope this link works.

[sido48 in reply to Shanellope93]

Thanks for the reply Shanellope,I have read about some of these techniques,theres an article on here I read last week,but its seems for too strenuous for someone of my age,the latest T3 scanner are good for seeing nerve compression ,I have seen pics of their results,google Tesla 3 scanners,sadly lots of hospitals don't have them ,luckily mine does,

[sido48]

Well folks its now July 2019, still getting nowhere, I did get a bilateral piriformis procedure, no effect, and I got a lower lumber procedure no effect, one thing I have learned the NHS have not got a clue on how to correctly do these procedures ,everything you ask for, you have to fight for,all they really want to do is pain meds with opiates, One last word, both my lower MRI`s when I asked to see the MRI it did show lower bulging, but they insist no compressions there, Well am now 71 so I think I`ll call it a day with them,

[Shanellope93 in reply to sido48]

I haven't been on in years. Just saw your last message. I hope you've made some progress. One thing I've learned is we have to advocate for ourselves. I've diagnosed myself now 3 times with accuracy. I'm still fighting to get answers after decades. But feel like I'm getting closer. I hope you are doing well . Would love an update.