Trouble walking and using legs, doctors ignore tests

[jjean]

I am going to post my medical test results (EMG's and office visits) in the techbical terms the doctors used, and I hope..I REALLY HOPE THAT A DOCTOR SEES IT, and can help me.  I have trouble walking, because it causes severe leg pain and stiffness.  (It is getting worse for years.)  I also have trouble using my knees, because they are weak and  I can not kneel down and get up, and have trouble climbing 5 steps.  My exams and tests are abnormal, and the doctors told me the tests were normal.  NO DOCTOR has helped me, or told me why I am disabled in both legs.  

These are the things the doctors wrote in my medical records...Please help me...

"Severe ongoing denervation of S1, and S-2… neurogenic claudication...sacroiliac joint dysfunction …localized joint dysfunction lower thoracic, and kyphosis...chronic motor axon loss of abductor hallucis muscle…absent medial and lateral plantar bilaterally……unstable patella…tenderness at the lumbo sacral junction and sacroiliac joint bilaterally … suprapatella swelling bilaterally…proximal weakness – especially ileo-psoas, quadriceps...
creptis – knees and neck…"

What does this mean, and why do I have constant pain in my sacroiliac area?

Bless anyone who can help me...

  

[ggreg]

JJEAN,
Well, the pictures from the MRI would really just enhance what your records say.  But your records explain very well what is going on with you, and I am amazed some doc hasn't at least offered some form of treatment, some relief.  You can Xerox your records and use a highlighter on the exact parts you quoted me, and take them with you.  And when you go to a new doc, usually they'll have you fill out forms, and they'll have a part where they ask how come you're there today.  That's when you write down precisely what you wrote for us here, the points in your records, so write that part of your post down, so you'll have it to copy onto the paperwork they give you.  

As for support groups, I'm sure if you did a general search from your home page, using diff words until you get results, you'll find some websites that are patient advocate type places, which may have resources to get medical help, and forums like this, legal advice, and even maybe what to do when a doc won't listen to you.

I think, too, you may wish to visit your family doc again, and ask for a referral to a new neuro or ortho doc to check you out.  And just in case this figures in, when you see the new doc, let him control the appointment, with the exception of immediately shoving into his hands your highlighted records, and perhaps the MRI disk if you get it, and maybe a printout of the website I put earlier.  He's gonna ask you how you are, and try not to explain everything, just hit the top three or top five of your problems.  He wants to work quickly.  I DO like your descriptions of getting out of the tub and stairs being a problem.

Gosh, I know how you feel, but I DO think if you keep chipping away at this, somebody will eventually give you some semblance of relief, to where you won't have to keep going to fifty-million docs, instead you can just go to one doc every six months as a routine.  I hope you will find a new doc soon and I hope the appointment goes well.

[jjean]

You really helped me here.  I will take your advice.  I need a back brace, because I have scoliosis (curviture of the spine) and this would help.  But the doctor is apathetic!  If I get  the MRI disc, perhaps another doctor will find something my doctor missed!  

I am so sorry of all you went through, also...it is so sad how doctors treat patients and make all kinds of mistakes and do not care.  IJust look at how many people write to medhelp!    If doctors were doing their job, people would not be asking for help.  Do you know that when I asked for my MRI report a few year ago, the doctors' secretry sent me the report of some woman in her 70's who had pelvic cancer!  This is a HIPPA violation, and when I called HIPPA to report it, they did not seem intertested, and would not tell me how to report it!  IMAGINEE THAT!  

I want to start a support group for patients who were denied care, and wonder if you know of such a group?  Someone I knoiw was denied access to the hospital, after filing a complaint with the ombudsman...this is unethical...the ombudsman is suppossed to reply to complaints!  

[ggreg]

I think if you show that printout of the website to the same doc who told you to leave his office, he will react that way again.  I mean, not only do you have a trapped nerve, but your report also talks about degeneration going on thruout your whole spine, not to mention how unstable your lumbosacral spine is, and of course its effect on your knees and feet!  Could be you can go to an arthritis doctor, since that may be why this is happening, unless you were injured somewhere along the way and all this is as a direct result of that.  But with that said, I actually do think it might be a good idea to school whichever doc is not treating you properly.

In any case, when you say the docs are not listening, I take it they are not offering any sort of treatment.  I'll tell you what treatment you should be getting, and that consists of two choices.  One is the moderate treatment route, where they might order physical therapy, a back brace, and of course medications.  The medicine I take is Lyrica, really great for both sharp pain and general pain, and since it's not an opiate, docs will almost always give it.  Also, some sort of anti-inflammatory drug would help.

Two is treatment by way of surgery.  Since your report says you indeed have a trapped nerve, a neurosurgeon or orthopedic surgeon can simply surgically relieve the pressure on the nerve, all the way up to also putting little pins and brackets to stabilize the spine.  I might add that while the report did not say so, I have to wonder how your vertebral disks are doing, because I imagine they might need surgical attention too, a surgeon will know when he goes in there.

So, you should be receiving at the very least moderate treatment to start out with.  If a doc is listening to you, he will offer such things.  Sometimes they'll just give medicine, or they'll go the whole nine yards with physical therapy and a back brace for you.  Other times they'll figure you're a hopeless case and you really MUST have surgery to get relief, but they usually don't go there until they've tried everything else, because surgery is risky with the spine.

I know of this struggle you have.  I actually have a neurologist who has been seeing me for years, and even tho X-ray shows my back is a wreck, and I gave paperwork from the hospital describing my fractures, and even tho I cannot feel the pin ***** they do on my legs below my knees, and even tho I limp, he would NOT give me medicine.  So, I went crying to my psychiatrist (I see one becuz of panic disorder from the car accident), and she truly knows me, and it was SHE who gave me Lyrica, instant relief, and then the neuro took over prescribing it for me.  Imagine that!  That is SO convoluted.  

Only other suggestion I can make is, if you are not receiving treatment, then whomever did the scan/radiology report, go to those people and ask them to please put the PICTURES on a computer disk, if they still have a record of the exam.  Not all docs can tell stuff from them, but could be just seeing the problem will help move them to help you.  And then, of course, if you went to a new doc, and in addition to your radiology report, you gave him a printout of the website I gave you, and told him you needed relief from all these problems, hopefully someone new will respond in a positive way and you'll finally get some quality of life back.  I feel for you.  Keep us posted.

[jjean]

Thank you so much...it is so nice to know that someone believes me...because the doctors ignore me...and the ignore the test results.  One doctor told me he "did not write neurogenic claudication in the report,"  and when I showed the print-out to him, he told me to leave the office...I have another repot where ie wrote that he asked me to leave, in his own words...!!!  

I will take the information from the website you gave me to my doctor...although I am scared he will still ignore me...why?  

I was sent to the PM &R department for a functional evaluation of my legs, and the doctor did not do it.  I have trouble getting in and out of the tub, and I can not climb too many steps, and have trouble getting on an off the bus.  One doctor saw that I can NOT stand on my toes or one leg, or walk heel to toe.  Why are the doctors ignoring me?  

I live in Cleveand Ohio, and one doctor was at the Cleveland Clinic!  I can not believe this is happenning to me.  

[ggreg]

I have a similar problem, lower back hurts badly, legs and feet don't work right, you know how it is.  Here is a website that discusses what is wrong with you, via the definition of neurogenic claudication:

http://www.laserspineinstitute.com/back_problems/neurogenic/def/

Now, to explain some of what your reports say, the S1-2 denervation means you've got loss of nerve supply in that part of your back, perhaps by injury or wear & tear, which that happens when a nerve is compromised in that area, known as "spinal stenosis," which is when there is a narrowing of a passageway for a nerve in a vertebral body (back bone).  This will also cause your lower extremities to do very poorly, which some of the terminology in your report refers to your knees and feet.

So, whomever is saying nothing is wrong with you is incompetent, and you need to visit another doc, be it a neurologist or an orthopedist.  Your back hurts because your nerves are damaged and that area is inflammed, and this is also affecting the way your knees and feet are doing.  This is what is happening to me.  Mine came from an old car accident that wrecked my thoracic spine, and at some point it telegraphed to other parts of my spine because of its deformity, the whole spine tilts, and now I got endless pain and a poor gait and on it goes, and while I am taking pain killers and Lyrica to help this, eventually I suppose I'll wind up with surgery, that's up to my doc whenever I let him do an MRI.  So, I don't know what the "fix" is, but I hope what little bit I've said will steer you in the right direction.