9 Comments

  1. Sir:
    I would love your view regarding Neurologists…and . I have recently been seen by a top neurologist at a teaching hospital neuropathy clinic, who, in spite of dropping density ( I am borderline below the 5th percentile for my age), axonal swellings, excruciation pain, and a boatload of other symptoms, was 1. MEAN ( I had a healthcare professional with me who has known me for decades and can vouch for my credibility. She was appalled at how I was treated) and 2. Has told me that my diagnostics do not reflect the severity of what I am reporting. I have been a chronic pain patient for decades, and managed w/out meds, worked out, and did my best. However, this onset w/in the last 14 months of severe bodywide Neuropathic pain has rendered me homebound. I am not seeking drugs, I am seeking a diagnosis and guidance. He told me that he thinks there is a “strong psychogenic component”, etc etc. My internist is also upset and wants me to see a “smart, compassionate Neurologist who is open minded” to help figure this out, if we can. He gave me two names – BOTH out of town and I may be too sick to travel anyhow)..his first choice does not take insurance and has a reputation for having an office that is impossible to work with wrt getting records, etc. The second is clearly more traditional and conservative – and at a major teaching hospital. My concern, is that they are All In The Same Club. My current ( mean doctor) is well published as is the second suggested one. They all go to the same conferences and i imagine it is a small circle. I want an independent, impartial eval, but would also have to take my records – a new doc would see where they were from, and from whom, and for all I know they are best buddies. Insights? I would gladly share names of the doctors and institutions, but offline. Thanks for any advice you may offer

    1. I will reply by E mail which is not as public. Had a terrible concussion form auto crash Dec 20th so a little behind in getting to everyone.

      1. I so look forward to your reply…. this is full body and I feel entirely hopeless, homebound at this point.
        I am certain this was Nitrofurantoin, and nobody will admit it, thus I cannot get treatment, IF THERE IS ANY????? See the article, “peripheral nerve toxic effects of nitrofurantoin” Arch Neurol/Vol 69 (No 2) Feb 2012,

        1. Jody: I sure appreciate the kind thoughts and prayers. The concussion really scrambled my brain and slowly things are getting back in order. Short term memory is back about 80% and long term memory is doing much better. The truth is, we are both lucky to be alive as we turned upside down and slide on the roof of the car for over 100 yards. The seat belts saved our lives as we hung upside done being held by them. The angels were with us that day so we praise our Lord for his watch care so that we might continue to do the Lords work for patients.

          1. Col. Richardson,
            I’m so very sorry you had this terrible accident. Keep an eye on your concussion. I had a concussion earlier this year – felt okay at first, but had some bad side effects about a month and a half later. In any case, I hope you and yours are well and you can enjoy the Holidays.
            . . . thanks once again for all your help.
            All The Best,
            JR Thibodeau
            MIddlesex CTY, CT

          2. Joseph: Thanks. The Neurologist said it would take a year… still affected by it… eye pain, ear pain, was hit on the left temple… but I think my long term memory is back in order, but short term is still worse than before…. so I just keep plodding along like you and others…. Guess concussions do more damage than thought…. the strange thing is that the emergency room doctor did not even diagnose it with a large lump on my temple which he never even examined it… so much for modern medicine… too much about $ and not the patient. But again THANKS for the thoughtfulness.

  2. Gene, Just wanted to say thank you for such a great and timely article! Every time I look at the website I discover something new. Your article on “Doctor/Patient Relationships: Unlocking Doors” couldn’t have come at a more needed time. The September meeting of the Grants Pass Peripheral Neuropathy Support Group topic will be on “How to Effectively Speak to Your Doctor and Be Heard” with attendees in a circle of conversation. I have been looking up resource articles and low and behold here is your article posted to our website. This will be a great resource for all to read and discuss. I appreciate all the hard work that is done by you, David Morrow and staff in keeping us all informed.

    1. You are so welcomed JoAnn as like us you are passionate about helping others!! Gene

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