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    STILL SICK AND FRUSTRATED WITH NEUROLOGISTS...

    I am still very sick and doctors are unable to definitively conclude what is making me sick. The following is a brief history of my visits with medical professionals:

    1. Neurologist #1 - suspected MS but no diagnosis
    2. Neurologist #2 - MS diagnosis and had it for years
    3. Neurologist #3 - definitely not MS
    4. Neurologist #4 - definitive diagnosis of MS
    5. Neurologist #5 - may or may not be MS

    #2
    I'm sorry that you don't feel well, but I'm confused.

    Why did you see so many different neuros instead of continuing following up with one of them and have them follow your case?

    I remember reading that you were only diagnosed a couple of months ago and taking Tec., so why neuro #5? You were in remission a few weeks ago, but now you are not? Or do you mean you haven't bounced back from a relapse.

    Comment


      #3
      Side effects?

      Neuro's are, unfortunately, human. I have had the same diagnosis, undiagnosis, different diagnosis, rediagnosis over the last 9 years. Right now, the consensus is that it is definite MS with a possible unknown co-existing rheumatic disorder.

      Over the years, I discovered that I could take the same lab data, symptom list and mri's to the different specialists I was referred to and ger a diagnosis based on specialty. Now, I can laugh about it, but back then it just led to more confusion. For example, in 2005, the neuro said "reaction to virus or toxin", the neuro-opth said "probable MS", the dermatologist said "behcet's disease" and the neuro-immunologist said "collagen-vascular disorder, likely sjogrens", the MS specialist said "glitch" ......not ONE diagnosis matched another! All I wanted to do was get better and go back to work.

      I can imagine you are likely feeling very frustrated right now and I don't blame you. My advice is to try to focus on getting symptom relief. Once symptoms are under control, the brain can more easily see which path to follow.
      Insanity is doing the same thing over and over then expecting a different result
      "Courage is the art of being the only one who knows you're scared to death" -Earl Wilson

      Comment


        #4
        I went through the same thing,

        Neurologist #1 – it is definitely not MS. I think it is diabetic neuropathy.
        Numerologist #2 – I definitely think it is not MS. If that is not diabetes related, it could be either lupus or rheumatoid arthritis ( wasted three years dealing with this)
        neurologist# 3 – I finally got an MS diagnosis.after all of this it is seven years later.

        They did enough blood work that I think all combined, it could have filled a tanker truck. And every time they did a test that I did not know what the letters stood for, I asked.
        hunterd/HuntOP/Dave
        volunteer
        MS World
        hunterd@msworld.org
        PPMS DX 2001

        "ADAPT AND OVERCOME" - MY COUSIN

        Comment


          #5
          To clarify...

          Originally posted by misslux View Post
          I'm sorry that you don't feel well, but I'm confused.

          Why did you see so many different neuros instead of continuing following up with one of them and have them follow your case?

          I remember reading that you were only diagnosed a couple of months ago and taking Tec., so why neuro #5? You were in remission a few weeks ago, but now you are not? Or do you mean you haven't bounced back from a relapse.
          Thanks misslux for responding to my post. I would like to clarify the following:

          Neuro #1 - 2010 - symptom of left face numbness - MRI revealed lesions - white matter disease suggestive of demyelenation

          …no new symptoms until October 2013

          Neuro#2 - October 2013 - double vision, fatigue, bladder dysfunction, depression, weakness in legs and arms - neurologist in emergency diagnosed me with MS

          Neuro #3 - November 2013 - ongoing double vision and other symptoms - neurologist in Emergency said no MS

          October MRI results - progressive white matter disease suggestive of demyelination

          Neuro #4 - January 2014 - referral to this neurologist by my family doctor who diagnosed me with RRMS and started Tecifidera

          Neuro #5 - referral of above neurologist to MS Clinic to visit with a neurologist who specializes in MS - probable MS but inconclusive

          I thought I was in remission but I still have ongoing symptoms such as double vision which is corrected with eyeglasses fitted with a prism, fatigue, depression, weakness in legs and arms, inflammatory back nerve pain, and also some blurred vision which I just have to adapt to because my eye doctor can do nothing more with the prescription of my eyeglasses.

          I just want to know for sure whether or not I have MS or not because the neurologists seem to disagree…

          Hopefully the report of the MRI I had done last week will help the neurologists make a more definitive diagnosis.

          Comment


            #6
            Thanks MarySunshine!

            Originally posted by MarySunshine View Post
            Neuro's are, unfortunately, human. I have had the same diagnosis, undiagnosis, different diagnosis, rediagnosis over the last 9 years. Right now, the consensus is that it is definite MS with a possible unknown co-existing rheumatic disorder.

            Over the years, I discovered that I could take the same lab data, symptom list and mri's to the different specialists I was referred to and ger a diagnosis based on specialty. Now, I can laugh about it, but back then it just led to more confusion. For example, in 2005, the neuro said "reaction to virus or toxin", the neuro-opth said "probable MS", the dermatologist said "behcet's disease" and the neuro-immunologist said "collagen-vascular disorder, likely sjogrens", the MS specialist said "glitch" ......not ONE diagnosis matched another! All I wanted to do was get better and go back to work.

            I can imagine you are likely feeling very frustrated right now and I don't blame you. My advice is to try to focus on getting symptom relief. Once symptoms are under control, the brain can more easily see which path to follow.
            Thanks MarySunshine for your response to my post. Wow, you have been at it a lot longer than I have. For me it has been since late 2009 when I had left face numbs…then pretty good until October 2013 when a full blown episode occurred with double vision being my worst symptom next to fatigue.

            Yes, I'm frustrated because if I don't ave MS I don't want to take Tecifidera. But I need to find out what is ailing me in order to begin treatment. I'm very tired most days and it makes it difficult to prepare healthy meals and exercise.

            Hopefully the doctors will figure out what's making me sick real soon.

            Comment


              #7
              Thanks Hunterd

              Originally posted by hunterd View Post
              I went through the same thing,

              Neurologist #1 – it is definitely not MS. I think it is diabetic neuropathy.
              Numerologist #2 – I definitely think it is not MS. If that is not diabetes related, it could be either lupus or rheumatoid arthritis ( wasted three years dealing with this)
              neurologist# 3 – I finally got an MS diagnosis.after all of this it is seven years later.

              They did enough blood work that I think all combined, it could have filled a tanker truck. And every time they did a test that I did not know what the letters stood for, I asked.
              Thanks Hunterd for replying to my post.

              Sorry you had to go through 7 years of not knowing for certain to come to a diagnosis of MS.

              Hopefully the results of my MRI I had done last week will shed some more light and aid the neurologist in a definitive diagnosis...

              Comment


                #8
                TO LIA WHO IS SICK AND FRUSTRATED

                I've had ms for over 20 yrs. The very first Dr. I went to after just being diagnosed, As I was walking out the door, he actually said, (I'll never forget) "Don't call me if you have any patches of numbness!" At the time I wasn't even sure what he meant. Patches? Then I just figured the numbness must move from your feet to other places in your body.But,
                REALLY, what a thing to say...and Truthfully, I'm NOT one
                to call a doctor or complain, etc. I TRY NOT to go to a doctor much and try NOT to take much medicine. I think too often I just grin & bare it and go on. Don't get me wrong, I appreciate doctors and modern medicine. But its NOT the center of my universe. I've had many neuros too over thru years and I think they are a unique breed. It must be depressing sometimes to see patients so often who are only getting worse, or physically hurt, and often the drs cannot help much. Finally, I have one who agrees that I no longer need the ABC drugs due to none of those are approved by FDA for secondary progressive MS, which I have.
                I know I keep hearing about folks who have a "Team" of
                people who work with the patient. I never had that.
                But I've had a few doctors who really like to push the drugs,
                when they didn't always help me, the patient.
                I've had a young friend who was dx with MS and went to different Neurologist who said NO, she did not have ms. (The lesion was just a tiny tiny spec) One was pushing the drugs at way too young an age and the other said no, she did not have it.
                Lia, have you had MRI's? Are you having symptoms of MS?
                I hope you can finally get the help you need and that you do find a good Dr.

                Comment


                  #9
                  Been there

                  My opinion is they don't really know a lot about the disease, but they are so full of themselves (they are Doc's of course and are almost God's to their family and friends), and won't admit to you that they don't really know how to diagnose your condition. That's why you get multiple diagnisis. If they understood it it would be a consistent diagnosis. They can't really help you. They are just legal drug dealers.

                  Comment


                    #10
                    Your MRI of "consistent with demyelating disease" may not be enough to get you diagnosed. It doesn't say consistent with MS. Which is a whole different thing, because MS lesions and white matter in MS look a specific way and are in specific places in the brain. Look up the revised McDonald Criteria for diagnoses for Multiple Sclerosis, it will tell you what it takes to get diagnosed. I will tell you it takes 2 brain lesions (distinct lesions), or 9 spinal cord lesions. If you have not had a spinal cord MRI, you need some. They could be the cause of some of your symptoms.

                    Take care and good luck

                    Lisa
                    Disabled RN with MS for 14 years
                    SPMS EDSS 7.5 Wheelchair (but a racing one)
                    Tysabri

                    Comment


                      #11
                      Originally posted by popie View Post
                      My opinion is they don't really know a lot about the disease, but they are so full of themselves (they are Doc's of course and are almost God's to their family and friends), and won't admit to you that they don't really know how to diagnose your condition. That's why you get multiple diagnisis. If they understood it it would be a consistent diagnosis. They can't really help you. They are just legal drug dealers.
                      Popie,

                      I recommend you consider reading "Curing MS" by Howard Weiner, M.D. In it, Dr. Weiner explains the scientific method used to determine what factors are at play in the disease process and how to look for agents that affect it. The scientific method is very time consuming, very expensive, and a collaborative effort between doctors, scientists, pharmaceutical companies, politicians, special interest groups like the MS Society (a MAJOR source of research funding), and MS patients willing to undergo trials. Medical research must follow ethical principles (those darn pesky ethics, you know, informed consent and all that) and limitations of established standards. Doctors are using whatever tools the research has been shown to have an effect on the disease process, and frankly, that has been chemical and biological agents.There are SO MANY variable factors that make up the immune system...genetics, environment, geography, pathogen interaction, interaction with other body systems...we're lucky they've made the progress they have so far.

                      As for doctors being "just legal drug dealers..." Let me tell you about my neurologist. He's a nice family guy with his kids' paintings on the exam room walls. He is always on time to appointments, has a sense of humor, and is an empathetic listener. He is anything but full of himself. He takes the time to explain symptoms and treatments without being patronizing. His staff seem to like him quite well, so he might be cool to work for. He is an avid cyclist (and has participated in the MS 150 in my region for a couple years now to raise funds for research). He can be seen commuting for miles to work at the hospital and his office, which makes me fear for his well-being because drivers, they be crazy, yo. A good neurologist is a valuable ally and would be hard to replace. He has consistently been in my corner with every relapse and been available to me when I called for advice and treatment to deal with relapses. If it wasn't for him, I might be in a wheelchair by now. I may very well end up in one anyway, but I certainly can't blame him for my bad luck. He tries to help me like I am sure he tries to help all of his patients.

                      Comment


                        #12
                        Lia
                        I hope you are still around...and if you are, here are my thoughts.

                        Gee...it seems to me like you have enough evidence to support a diagnosis of MS. Is there a reason why there was no lumbar tap ordered for you?

                        When I was diagnosed, it took the neuro all of about 1 week to pin a diagnosis on me. First a complete reflex and poking all over session with a few student doctors watching, then In to the tube, where the MRI showed some de-myelination in the spinal cord , C-Spine, then the results came back with proteins that are a by-product of MS activity.
                        Ding. "You have this thing"

                        He handed me a pamphlet that gave a somewhat general talk about MS, and said "Good Bye"...

                        I requested an appt to discuss treatments, and instead of an appt, I got an email from his office saying that my MS wouldn't benefit from any of the treatments available at the time.

                        So I fired him and found a neuro who was willing to help me with authorization for treatment with Copaxone. God Bless Her!

                        If you are still seeking a diagnosis, I would insist on having the whole schmear again, MRI, reflex, eye and a lumbar tap. LT is no fun but can give your doctor something tangible to evaluate.
                        Good luck... I hope you don't have "it", and that your condition is curable.
                        Jim S.

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