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4 yrs & no definative diagnosis....looking for dr suggestions

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    4 yrs & no definative diagnosis....looking for dr suggestions

    I've browsed through the threads for a few months and the information here has been very helpful. I'm looking for suggestions on type of doctor to see for help. I live in a small town with a hospital and my primary doc is a nurse practitioner at the college campus I work at. There is a large town (Phoenix) 2 hrs away - eo I have access to most medical stuff here.

    I woke up 4 yrs ago with numb feet. I've gone from walking with AFOs, walking with crutches, now manual wheelchair. I've lost the ability to walk entirely and can't stand to transfer. There is constant numbness in my feet and legs. I've also been diagnosed with a neurogenic bladder. The first neurologist told me it was potentially MS but to wait and see bcause it could take up to 5-7 yrs for a diagnosis (my MRI scans were inconclusive). The second neurologist told me I was crazy and then he said it was migraines. The third neurologist specialized in neuromuscular diseases and told me I have idiopathic myoneurpathy with ascending parasthysis (not sure if that's spelled right).

    I take neurontin for the nerve pain but it barely dulls it. I also take baby asprin to prevent blood clots and macrobid to prevent UTIs. My primary doc wants to get me back into a specialist because the numbness and pain is up to my low back / hip area; but.my doc is out of ideas. Any suggestions would be great.

    #2
    Sorry that you are going through all this sledgrl. It does sound like you need to see a specialist who can offer the sophisticated medical testing only available at larger cities. Please go see someone with expertise in neurology. Wishing you answers and treatments that are effective.

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      #3
      Hi sledgrl, I agree with Eileen that you need to be evaluated by neurological specialists in a larger city. I have learned the hard way that there can be a huge difference between medicine practiced in rural areas, and in cities where specialized equipment and expert care are available. You're fortunate to live so close to Phoenix. Mayo has a branch in Scottsdale. You've been patient long enough, you deserve answers. Best wishes to you!
      MS with cervical and thoracic cord lesions

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        #4
        Thanks for the suggestion of Mayo. I to have heard they are great. Unfortunately they don't take Blue Cross Blue Shield insurance from Arizona. It's crazy that I have amazing health insurance through my employer but Mayo won't take it. I'll keep trying to get into another neuro doc in Phoenix.

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          #5
          That is weird, considering how many people have BCBS!

          You might also consider looking into the Barrow Neurological Institute in Phoenix. It has a very good reputation.
          MS with cervical and thoracic cord lesions

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            #6
            My diagnosis first came from my physiatrist...then confirmed by a neurologist. It is weird but since the physiatrist sees all sorts of different things, he was the one to put all of the pieces together. You may want to try there.
            "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

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              #7
              Have they done a complete MRI of the entire spinal column with contrast? You need to be checked for arterial venal malformation (AVM) / dural fistula. Symptoms sound consistent on the little info provided, esp if it came upon you slowly with no trauma --- Best wishes, get it checked now.

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                #8
                this is ridiculous that you have gone 4 years, from walking to wheelchair with no dx. that is unacceptable. There must be one decent md somewhere that takes your insurance, what the hell is wrong with these people.

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                  #9
                  Have you taken a spinal tap? They can see sclerosis in the spinal fluid if you have MS.
                  TH 12, 43 years post

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                    #10
                    Originally posted by woman from Europe View Post
                    Have you taken a spinal tap? They can see sclerosis in the spinal fluid if you have MS.
                    Actually, they can't - the lumbar puncture is used mainly to confirm suspicions based on clinical examination and MRI. With MS, the spinal fluid often (but not always) displays oligoclonal bands and high antibody ratios, but those are not exclusive to MS. And sometimes people with MS have normal lumbar puncture results. There aren't any specific tests for MS, it remains a diagnosis of exclusion. So it's important to see a neurologist with expertise in differential diagnosis.
                    MS with cervical and thoracic cord lesions

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                      #11
                      I agree with the full spinal MRI with contrast. Next, have it read by an interventional radiologist. Barrows has the best diagnosis and treatment of AVM's with Dr Spetzler.

                      I went without diagnosis for about 8 years. The sooner your diagnosis, the better possibility of outcomes.

                      My best.
                      In the dime stores and bus stations, people talk of situations, read books, repeat quotations, draw conclusions on the wall. ......Bob Dylan

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                        #12
                        Originally posted by Bonnette View Post
                        Actually, they can't - the lumbar puncture is used mainly to confirm suspicions based on clinical examination and MRI. With MS, the spinal fluid often (but not always) displays oligoclonal bands and high antibody ratios, but those are not exclusive to MS. And sometimes people with MS have normal lumbar puncture results. There aren't any specific tests for MS, it remains a diagnosis of exclusion. So it's important to see a neurologist with expertise in differential diagnosis.
                        Here they give the people the diagnosis MS if they have plaque on the brain and sclerosis in the spinal fluid. It is the only way of getting it. I know people with MS who have no trouble at all, but they still have the diagnosis MS. Some people are like that, some people get paralyzed, quick or slow.

                        But I know that things like this are different here and there. For me it seems like people with MS are getting better threatment here but people with SCI are getting better threatment in the US.
                        TH 12, 43 years post

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                          #13
                          Originally posted by Bonnette View Post
                          Actually, they can't - the lumbar puncture is used mainly to confirm suspicions based on clinical examination and MRI. With MS, the spinal fluid often (but not always) displays oligoclonal bands and high antibody ratios, but those are not exclusive to MS. And sometimes people with MS have normal lumbar puncture results. There aren't any specific tests for MS, it remains a diagnosis of exclusion. So it's important to see a neurologist with expertise in differential diagnosis.
                          I'm not SCI and my neuro at the time told me my lumbar puncture seemingly showed the presence of protiens that indicated cancer or MS, but both were instantly ruled out. He went on to say *something* was obviously going on, but he'd no idea what. It took misdiagnosis from subsequent neuros before it was finally decided I had Hereditary Spastic Paraplegia by a specialist in this.

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                            #14
                            Hi Ian. Yes, with neurological disorders it can be maddeningly difficult to get a correct diagnosis and I'm glad to hear that you finally got the right one. None of them are good to have, but at least it's a relief to know what the problem is!
                            MS with cervical and thoracic cord lesions

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                              #15
                              Originally posted by marycsm77 View Post
                              this is ridiculous that you have gone 4 years, from walking to wheelchair with no dx. that is unacceptable. There must be one decent md somewhere that takes your insurance, what the hell is wrong with these people.

                              That is exactly what happened to me as well. I am guessing this happens more than what we know...it is extremely frustrating and still angers me.
                              "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

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