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    Old 04-01-2004, 02:34 AM   #1
    Join Date: Aug 2003
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    sealover HB Usersealover HB User
    Red face First visit to the neurologist; trying to make a diagnosis.

    I had an injury to my left forefoot back in Novemeber '03, and I wrote about it on this RSD board. A couple of podiatrists thought that perhaps I was suffering from RSD, but my worst symptoms subsided within the first 1-2 months of treatment with anti-inflammatories and physical therapy. Another podiatrist said that she doesn't think I have RSD, but the symptoms of swelling, hypersensitivity, tingling, cramping, and inability to move my toes were gone by the time I had that appointment with her, so she didn't see what my foot looked like with all the symptoms I had. Though she said it was possible I had RSD that went into remission.

    Well, yesterday I had my first appointment with a Neurologist, and he examined me and my feet. He said that he doesn't think I have RSD, and even if I had it and it is in remission, there's no way to tell if I ever had RSD! He even said that if I went to 100 neurologists, I would get different opinions in that half would say that I had RSD and the other half would say that I never had it. He also said that if I had RSD, my entire foot would have shown symptoms rather than the symptoms being confined to just my this statement true about RSD, that RSD affects an entire foot, and if the symptoms are confined to only a small part of the foot, you don't have RSD?

    The neurologist told me to stop taking the Bextra for a few days and start taking Neurontin. He is also going to order a 3-phase bone scan for my foot and a nerve conduction study. However, I was surprised that he said he wouldn't be the right person to order an MRI because he wouldn't know how to interpret the MRI results in my foot...shouldn't a neurologist be able to understand the results of an MRI of the foot? I don't know what to expect a neurologist can do for me, as I've never been to one before...can anyone offer any insight as to how a neurologist can help.

    Currently, the plantar side of my 2nd toe of my injured left foot is still hypersensitive and tingles. More importantly, the plantar fat pad on the ball of my injured foot is atrophied beneith the sites of 2 cortisone injections I had received soon after I injured that foot. The podiatrist NEVER warned me of the possible side effects of cortisone shots (if I had known then what I know now...). The neurologist said that he has never seen atrophy like this before. The atrophied area is painful to walk on, it is red in color, I can feel my bones through it, and I have started to have prickly sensations in the atrophied area as of a couple of weeks ago. When I am on my feet for a period of time, I get horrible pain in the atrophied area and shooting pain into the 2nd toe. I was at the mall with my mom last weekend and the pain was so bad, I thought I would need a wheelchair to get me out of the mall to the car. I am feeling depressed about not being able to be on my feet as much as I used to and about having atrophy and pain. The fat pad on the foot can never be restored. I used to be able to take walks and go shopping and do things, and now simply going grocery shopping and doing housework is stressful. I don't have anyone except my mother to help me, and she cannot be there for me all the time, so I worry about what is going to happen to me in the future. I am overwhelmed, and the thought of wanting to die has crossed my mind recently. I am taking Lexapro for the depression, but I'm still feeling down.

    Sorry this was a long post, but I had to vent. I think of all of you often and you are all in my prayers.

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    Old 04-01-2004, 07:05 AM   #2
    Join Date: Nov 2003
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    Jewel2 HB User
    Re: First visit to the neurologist; trying to make a diagnosis.

    Hi Sealover,
    Thanks for coming back and letting us know what's going on with you. I'm sorry you have been having a difficult time.

    First, if you are having any suicidal thoughts you need to talk to a professional. Often anti-depressants aren't enough to get you over the really rough times. I think it is perfectly normal for you to be experiencing some deep depression as your life has radically changed and you aren't even sure why yet. You are trying to get help at the same time you are trying to adjust. All of that can be so overwhelming. Most all of us here can relate. Please don't be afraid or ashamed to seek help.

    I'm not sure why your neurologist said what he did unless he rarely works with patients with foot problems. Sometimes the radiologist reports refer to things in the films that the doctor has to look at and maybe your doc realizes his limitations. This happened to me with my orthopod. In my little town there are no hand and wrist docs so I went to the closest thing I could find - an elbow ortho (it made sense to me!). Anyway, he only knew the very basics of what the radiologist's report said as he went over my MRI's with me. (I eventually had to travel 450 miles to see a hand and wrist surgeon). Doctors are so specialized these days. I would imagine that a podiatrist would be the one to look at an MRI of your foot. And I would think that your podiatrist and neurologist could conference about that. The bone scan results would be read by a radiologist and might say something along the lines of "blah, blah, blah activity consistent with reflex sympathetic dystrophy" if you actually have RSD. That report would help your neurologist.

    In what order are you having the bone scan and the NCS? If the bone scan shows RSD I would question whether or not to have the NCS. I haven't had one on my RSD limb, but others on the board have said they are painful with the RSD. It's just a thought.

    As far as RSD being confined to just one part of your foot, I've known of it being confined to a single finger on another person, so your situation wouldn't surprise me at all. Perhaps your doctor's scope of experience just isn't broad enough to include the more unusual cases??

    I really feel your frustration and hope you find answers and relief very soon.

    Take care,

    Old 04-01-2004, 07:37 AM   #3
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    Re: First visit to the neurologist; trying to make a diagnosis.


    I KNOW HOW YOU FEEL, I went to 13 plus doctors to finally get my diagnosis. I go to neurologist who is great.

    Usually a radiologist doctor reads a MRI and catscan, and then he sends a report to the doctor. A mri won't show RSD, and a bonescan will only give show good results if the bone hasn't had surgery.

    Ask your doctor about a qst(quantative sensory test) no needles, this will help confirm RSD. A EMG will be painful if your sensitive to someone touching the foot.

    I would do the tests, but meantime I would start looking for another pain doctor in your area or state and make a appointment, because usually you'll have a wait. It took me 6 months to see my doctor, but worth the wait. If the doctor is truly a good doctor and compassionate I don't think he would be telling you that half dozen would say RSD and the other half dozen doctors wouldn't. That doctor doesn't seem to have much empathy to me. I drive over 3 hours for my doctor, because truly alot of local doctors don't understand this disease, the bigger cities have doctors who see it more often and treat it.

    A PERSON DOESN'T HAVE TO HAVE EVERY SINGLE SYMPTOM OF RSD TO HAVE RSD, the hallmark sign is pain. Alot of doctors I think must see every single symptom or physcial characteristic of RSD to call it RSD, but if you find a expert doctor who treats RSD every single day and sees it,in all shapes and forms, that will be,a doctor that you can believe and trust in their diagnosis. Hope this helps you some, good luck, it may not be a easy road, but your in my thoughts.

    Old 04-01-2004, 02:56 PM   #4
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    Re: First visit to the neurologist; trying to make a diagnosis.


    First of all, I am so sorry for what you are going through. Sometimes I think the medical community has become to specialized. They don't know alot of anything out of their speciality. That's why we are all running from MD to MD. I know I see a PMD, OB-GYN, OMD, dermatologist, gastro, eye doctor, GPMD, a diet MD and I go to PT. Oh and don't forget the specialists within the specfic branch of medicine.

    A radiologist is once again another specialized MD. It's all he does during the day is read x-rays, MRIs, bone scans etc. I'm thinking that your neurologist sees it as a foot problem which would be seen by an orthopaedic MD. They see lots of RSD and can diagnosis it much faster. My OMD diagnoised mine within the first 6 months time frame.

    If you are depressed, please seek some counseling. My PMD has a psycholigist in his office and I can't tell you how much it has helped me. When I look back on how I was last year compared to this year. It is a total change. And I don't think I could have done that by talking with family or friends. It's not that they can't or don't want to help, it was extremely hard for me to open up to them. To tell them how I hurt and I don't mean just physically. To me my future was so bleak. I couldn't see past the pain. There was only pain going on and on and on. I can also tell Dr. T things I wouldn't tell anyone else. I mean who is he going to tell. I think, Sea, that you will find so many people like you that can understand where you are coming from on these very boards. I'm not proud of how I felt then, but I am very proud of me for getting the help and finally admitting that I couldn't do it all. I lost many people I considered good friends through that time. I now am surronded by friends that love me. I can count on to be there. They also know they can depend on me.

    Your not alone. We are here 24/7. Post don't worry if it's long. I love to read.

    Hugs and thank you for listening to me.


    "Somebody's praying me through"

    Old 04-02-2004, 09:41 PM   #5
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    sealover HB Usersealover HB User
    Re: First visit to the neurologist; trying to make a diagnosis.

    Thank you all so much for your kind words and for your advice.

    I am having a bone scan first, then an MRI, then the nerve conduction study...not all in one day of course! I'll ask the neurologist about having a quantitative sensory test. This neurologist said that he doesn't know any neurologist that does thermography or the quantitative sudomotor axon reflex test & thermoregulatory sweating test (I cannot believe this!), and he said that insurance doesn't cover thermography tests. Have any of you had a thermography test, sudomotor axon reflex test, and/or a thermoregulatory sweating test, and did your insurance cover these tests?

    I am receiving counseling plus the Lexapro & sleep meds, but I'm still very depressed...some days much more than others, and I realize that it may take a while before I may feel better. I have no emotional support from my siblings, but my parents are 100% there for me. I truly feel hopeless, overwhelmed, sad, frustrated, and tired of my foot injury and going to different doctors and having tests done.

    I do feel in my heart that I don't have the best and most knowledgeable doctors, and I've been searching. I don't think that they have been very thorough in their examination, diagnosis, and treatment of my injury. I've been to my family doctor twice about my foot injury...he is the one who got the first look at my injury and he said it would heal completely in 2 I'm thinking that he is a nitwit to say it would heal in 2 weeks (I wish it healed in 2 weeks, that would have been a miracle given the symptoms I had)! It's been over 4 months and I'm still having problems. The second time I saw my family doctor for my foot, he wouldn't even examine it. I've been to 3 podiatrists...the first one injected me with cortisone twice and that cortisone caused atrophy of the fat pad on the ball of my foot, and this is painful to walk on. My current podiatrist who I just saw recently told me to change my attitude and then my pain level would diminish. She told me to not focus on the injury and to get on with my life, and she is going to put a stop to my physical therapy, saying that I can do it all on my own at home...hmmm. Now I'm on my 1st neurologist, and it doesn't seem like he has much experience diagnosing RSD. When I would try to talk to explain something to him, he would cut me off. He did take a while examining me, but his interrupting me while I'm trying to talk doesn't sit well with me. I just want to find out what is wrong with my foot, but it seems like (in my case) doctors don't want to spend too much time listening and answering questions. Did any of you have some of these frustrating experiences with doctors?

    Thanks again for any advice. Your support means so much to me.

    Old 04-03-2004, 08:01 AM   #6
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    Re: First visit to the neurologist; trying to make a diagnosis.



    THATS WEIRD THAT YOUR NEUROLOGIST DOESN'T KNOW WHERE TO GET A QST TEST DONE. I didn't have mine QSt done yet, but its one of the tools they use to show hot/cold spots. I'm not sure about themrography.

    Any ways your insurance should pay for everything if a doctor feels its medically needed to treat you. Call your insurance and ask ,because I know some of these tests don't seem like much but when your billed, its a huuuge bill.

    take care

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