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  • #16
    Infectious Disease specialist...that's what I've been looking for. But, I'm out here in the middle of nowhere iowa, and if you haven't got four legs or a beak, they don't exist.

    Maybe Des Moines, or Iowa City, but I've got to let DW get her cataracts fixed before I can organize another road trip. That puts it back to at least mid August.

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    • #17
      Originally posted by willingtocope View Post
      Maybe Des Moines, or Iowa City, but I've got to let DW get her cataracts fixed before I can organize another road trip. That puts it back to at least mid August.
      Something to plan for, maybe...you could use the time between now and August as a research period, looking into the best infectious disease docs in Des Moines and/or Iowa City.

      Hope all goes well with your wife's cataract surgery!
      MS with cervical and thoracic cord lesions

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      • #18
        One good thing about this little town...its 30 miles away from one of the top 10 cataract surgeons in the states. He did mine in March...a week apart. I now have 20/30 in both eyes. No pain, no discomfort, no sweat.

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        • #19
          Originally posted by willingtocope View Post
          One good thing about this little town...its 30 miles away from one of the top 10 cataract surgeons in the states. He did mine in March...a week apart. I now have 20/30 in both eyes. No pain, no discomfort, no sweat.
          That is so good to hear! It is wonderful that you live close to one of the best surgeons for that procedure.
          MS with cervical and thoracic cord lesions

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          • #20
            I really don't think a regular infectious disease person will help you. They will not have enough knowledge about neurologic symptoms/examination, LP/MRI etc.. and will have not seen patients like you before.

            There is a very very rare speciality of Neurologists with an interest in infectious disease. Many of them focus on the neurologic manifestations of HIV, but some are broader.

            Didn't you say you were seen at Mayo once?

            They list a person who specializes in Neuro-infectious diseases.

            http://www.mayoclinic.org/neurology-rst/neuroid.html

            Dr. Aksamit. Sounds like he is quite experienced. I would just email him, and ask if he can recommend someone nearby. Or go see him.

            So infectious disease people will want to know everything about fevers/chills, rashes, exposures (travel history/animal contacts), lumps and bumps, joints and eyes, immunizations. So have a detailed history of all of that, and how things correlate with any of your attacks/symptoms.

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            • #21
              so, the denial thing really got to me.
              After getting the MRI, that is two three hour stints in the tube, the tech says, so how long have you had ms? I said what?
              she wouldnt say another word.

              went to Gp, and asked it she saw any results for my mri, and she says their are leisions, but I need to see the neuro for diagnosis. I went last week to see him, but my copay had risen to 50.00 and I didnt know that until I got there, so couldnt get my results, but I scheduled the corotid ultrasound, emg and was supposed to get a lumbar pucture, nurse said he put a hold on that. so, anyway, I have ms, and something called autoimune hepatitis. I had no neuro symptoms before my accident except with pregnancy, and that was attributed to a birth defect a t10.

              an mri in 2005 showed no lesions but injury and degenerative disc disease.
              however the ssdi judge appointed a neroligist to dicount my disability claim, and that dr testified at my hearing that he suspected ms. a second neuro exam different doc, also suspected ms, another doctor said it is something called pots.
              never heard of that.

              anyway shit sure happens.

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              • #22
                about the infectious disease thing. this recent trip the the neuro, included about 16 vials of blood for many imune type tests. I mean more tests than I have ever had. mostly infectious diseases, and imune type diseases like lupus, and such. most were negative. but well, the neurologist ordered a ton of tests for just about everything having to do with inflamitory illness, hepatitis, blood parasites, just all kinds of stuff.

                willingtocope did you get those type of test from your neuro? if so why is an infectious disease doctor needed?

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                • #23
                  Some bacterial and/or viral infections show symptoms similiar to what I'm experiencing. The list is fairly long, but the ones I've been tested for so far...Lyme disease, HIV, etc...have all been negative. The key seems to be that the infection needs to cross the blood / brain barrier (such as menegitis, which I had 60 years ago) or attack the nervous system directly (such as shingles, which I had 35 years ago).

                  In fact, Gout exhibits similar symptoms in some cases.

                  Distinct lesions on the spine are considered clear evidence of MS...but...they look similar to scar tissue. I've damaged my back several times over 66 years. Never broke it, but hyper extended a few joints, fell on some cement steps, etc...

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                  • #24
                    Originally posted by willingtocope View Post
                    Distinct lesions on the spine are considered clear evidence of MS...but...they look similar to scar tissue. I've damaged my back several times over 66 years.
                    This is the kind of thing that haunts me, too. I have lesions at all levels of the cervical cord, and the only reason that I can still ambulate with a KAFO is that they are scattered. Like you, I have had numerous injuries that could have left scars. The neurologist who finally diagnosed me with MS said that my injuries could have caused deficits in addition to MS, but that MS lesions are identifiable by their shape and cord-segment span; and injuries do not produce oligoclonal bands. So it's impossible to say for sure which cause is responsible for which effect - there might even be a nasty synergy between them.

                    Like Jody, I was tested for many infectious processes (both common and uncommon), and I completely understand your need to rule out as many of them out as possible. I hope that you will find a doctor willing to look for zebras as well as horses!
                    MS with cervical and thoracic cord lesions

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                    • #25
                      Originally posted by Bonnette View Post
                      injuries do not produce oligoclonal bands.
                      True...but...C.Puenomia infections do.

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                      • #26
                        Yes, several infectious agents can produce oligoclonal bands. I was only referencing injuries in my post (above).
                        MS with cervical and thoracic cord lesions

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                        • #27
                          Originally posted by jody View Post
                          about the infectious disease thing. this recent trip the the neuro, included about 16 vials of blood for many imune type tests. I mean more tests than I have ever had. mostly infectious diseases, and imune type diseases like lupus, and such. most were negative. but well, the neurologist ordered a ton of tests for just about everything having to do with inflamitory illness, hepatitis, blood parasites, just all kinds of stuff.

                          willingtocope did you get those type of test from your neuro? if so why is an infectious disease doctor needed?
                          When I showed up by helicopter at the ER/ICU in Germany with no signs of trauma and totally paralyzed, out and needing tubed after being bagged for 20 minutes talk about zebras. They did all the normal tests but an MRI and a head CT. Had the CT done at the first stop while awake and the MRI had not been installed yet. The docs went over my medical history with my husband and that left little to look at too. Then Jay mentioned traveling due to the Army and as a Army civilian. They tested me for everything from adeno viruses, all std's, hata viruses and even Ebola and plague. When I got back to the US for rehab they called in an expert in blood infections from Georgetown. His assistant drew 19 vials of blood out of me. Negative for everything. Basically the blood just stopped flowing through a tiny spinal artery--ischemia. Yep, sometimes shit just happens.
                          Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                          Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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