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    Confused and Angry

    I am newly diagnosed (8/11) and as such feel that it is the responsibility of my neurologist to ensure that I have a good understanding of this disease and what to expect. It frustrates me when I deal with things or have questions, and I call and leave a message for the nurse to call me back and no one gets back to me until 2 to 3 days later.

    For instance, I had a very scary situation on last night where after getting very nauseated, sick to my stomach and getting very hot, my hands actually 'locked up' on me. I had my fist balled up at the time and I could not open them! Before they locked up I felt the tingling sensations speeding up and spreading up and down my arms right before they locked up on me. I called for my husband who came and rubbed them and basically pried them open and continued to rub them and comfort me until I cooled down and they were better.

    I'm NEW to this I needed my doc to tell me is this normal. I was suppose to do Achthar gel injections for 5 days to deal with my tingles throughout my body but the medication company has been unable to get what it needs from the doctor office to complete the order! When I see him in person, he is great, thorough, and was the one that captured things that other physicians missed. When I have questions, I feel like I'm being a bother and I hate to call. This is MY LIFE I feel like they are not taking serious and I don't know what I need to do

    Thanks for listening

    ***Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.***

    #2
    I'm sorry! That's very frustrating. I know how scary the first few months can be.

    Just an idea... Have you asked your doctor how best to get in contact with him when these issues come up? There may be a way to get a fast response that you haven't heard about.

    Comment


      #3
      hi charlag -

      I would be terrified too with those symptoms and I'm sorry you had them but grateful your husband was there for you.

      My doc had a 'gate-keeper' - his assitant was like Fort Knox. I was lucky and had very few instances where I needed him right away, but my friend needed him often as her symptoms were getting worse at an alarming rate. She could not get past that assistant - she was not a nurse.

      I started sending faxes to his office - I was lucky to have access to a fax machine at the time. Now I am not sure what I would do except get a fax service through my computer. I have moved to a new state and don't see him anymore. I suggest, if you are able to contact him that way that you try it. I got an answer the same day and sometimes he was even the one who called me back.

      If it gets bad enough, go to his office and sit there. My friend has done that when she lost vision in her eye and wouldn't get a call back. The assistant should thank her lucky starts my friend's husband didn't show up in uniform - he's a police officer and didn't like that his wife was being ignored.

      Also - I had an orthopedic surgeon pull that on me, I couldn't get past his assistant, again not a nurse but was ready to give me a scrip for narcotics. I was in so much pain I was in tears and I threatened to go to another ortho in the area and explain that her boss refused to talk to me, see me or get another ortho in the office to see me. I asked her if her doc would like me to do that because she wouldn't give him my messages - it would not look good for their office or him. He called me from the golf course 10 minutes later.

      I don't put up with stuff like that easily. I've worked for doctors. I'll find a new one if that kind of behavior continues. I'm the patient, they work for me, I'm in pain, I'm sick, I know my body and if I'm scared they better do something about it.

      I haven't had any issues with them once they know I'm serious. The ortho was the only doc I had to do that too - all my others have been wonderful. I really do hope you get through to your doc. Be clear and tough - I know it's hard when you are scared. I also have pseudodobular effect and cry at the drop of a hat so it's not easy for me to be straight forward without crying. Although, crying has gotten me "in" at least once!

      Have your husband call too - it can help sometimes. It helped me with an attorney who was blowing me off. I worked for attorneys too.
      This music is the glue of the world Mark. It's what holds it all together. Without this, life would be meaningless

      Comment


        #4
        tmi & long again, what's a person to do? no texting skills

        I fear i will be attacked but it is my true opinion.

        this is normal, what your experiencing. ms is such a unique disease, and has a different run with everyone who has it, its quite unpredictable, you have more questions than your doc can tell you what the answer is.

        so they don't. that is all they can do. i have read and i believe doc's rely on support groups like this to explain what is happening.

        my doc did tell me...that i have ms, that i no longer have a "normal" i have a series of baselines and each current baseline will be less than the previous baseline"

        after that it was up to me to find out what steroids were for, what the disease modifying meds were for, how each one was different, what a relapse was, what defined a relapse, that relapse=exasberation= attack.

        what a relapse was, when i should call. i was never told when to call the doc, i had to find out on my own? from the message boards.

        it was funny, my diagnosing episode affected the right side of my body. 20 days later the left side of my body was affected. it was affected in a public situation, so i did have to contact my doc about it...i remember telling him this is not a ms relapse because 30 days have not elapsed since the last relapse you treated me for.....so this cannot be a relapse.

        he opened his eyes wide & looked at me with astonishment..."those are guidelines Lynn, not rules. you are learning guidelines and this is a 2nd exacerbation of ms"

        i was like wtf, but i said the actual words in my mind...how am i suppose to figure all this stuff out!!!@#!@

        the problem is MS is a uncure-able but treatable chronic debilitating disease, but it is rarely life threatening.

        their time is used more for life threatening disease. from our point of view. no chronic disease is better but when all is said and done, if a person has to have a chronic illnes MS is a good way to go.

        in the realm of neurological possibilities, ms is like the common cold of disease. not acute, not cure-able, just treatable & live-able. just another unexciting long term client. we would be more exciting for them and command more attention from them if they could fix it or if it would kill us if they ignored it. but MS has neither one of those exciting possibilities.

        Buck up, your own your own in a defense mode to find out what is going on.....Use the message boards to get answers to your questions, they give a start were to go from there if you want more.

        i bought the book MS atlas of MRI lesions to understand my MRI after i had gotten a copy from the mri center. I read & understood the mcdonald diagnosing guide to understand how MS diagnosis is done...i'm uncertain how much you want to get into this research but my email address is in my profile, send a message and i will reply with all kinds of info i had to research and understand....just be sure to identify yourself as being from MSWorld, because i do not open email from sources i do not recognize.

        but i will leave you two good websites to read on ms for understanding it...many people have also bought the book MS for Dummy's and found that helpful for advice on how to live with MS...me i'm more into details..so the sites i like are less about living with MS and more about understanding what it is.

        http://www.mult-sclerosis.org/howms.html

        that site explains how ms does its damage and give trends on what to expect as the disease progresses.

        http://www.thjuland.net/0site.html

        that site has terms alphabetized and links to articles about the subject...if you select It Types, then scroll down, it gives you a list of 11 indications when ms is progressing from RR to the more progressive form.

        Actually good luck with your information journey, you are the captain & you will make it into whatever you want the information journey to be.
        xxxxxxxxxxx

        Comment


          #5
          Do you have a PCP?

          My neuro at first was very defensive about me contacting my PCP first then when the PCP determined it was ms related the neuro would treat it... the neuro is a speciailst in the CNS and thats what he treats.

          it was very confusing at first. i had no previous medical needs prior to MS and i didn't even have a PCP. the neur made me get one....it was a situation that angerd me much.

          i was using one 1 prescription med and i thought i was getting hives from it & it needed to be changed.

          i was forced to get a PCP, then the ##*(but she is nice, just stuck in the middle of a fight between me & the neuro) PCP looked at the hive on my back & legs and in my damn mouth AGREED with ME that they were medication induced and i needded to stop that medication the neuro had prescribed. Suddenly the neuro was interested in treating me again since he was the one who had prescribed the meds i thought he had a responsibility to do so.

          i declined to be treated by him & found a new neuro. but this new neuro is also careful to not treat anything non neurological although i see her once every 6 months because of the medication i am an for MS requires that i see her once every 6 months anyway & she has a medical degree. I don't understand why she can't treat everything?
          xxxxxxxxxxx

          Comment


            #6
            0485c10

            you are to be congratulated regarding such a complete "on target" post. I've had ms forever and I found your post to be well done !

            Maxx

            Comment


              #7
              too long again! damn

              Originally posted by charlag View Post
              For instance, I had a very scary situation on last night where after getting very nauseated, sick to my stomach and getting very hot, my hands actually 'locked up' on me. I had my fist balled up at the time and I could not open them! Before they locked up I felt the tingling sensations speeding up and spreading up and down my arms right before they locked up on me. I called for my husband who came and rubbed them and basically pried them open and continued to rub them and comfort me until I cooled down and they were better.

              I'm NEW to this I needed my doc to tell me is this normal.

              your new to this. i'm unsure how much you have picked up already. do you understand what a pseudo relapse is or how to deal with one.? i'm very gullible person, i don't always recognize when a person just needs to vent-have contact and validation from other human beigns and when a person is actually looking for information.

              at times i think i have some kind of a low level form of autism. i just don't recognize signs.
              xxxxxxxxxxx

              Comment


                #8
                Thank you all for the helpful information & suggestions. I'm learning I do have to do a lot more research on my own because even reading the post on the message boards there are a lot of terms I don't understand. I'm very thankful for this site so PLEASE keep it going!

                Comment


                  #9
                  Thanks Maxx for the support of the reply.
                  it makes a difference in how it will be read/interrpreted
                  xxxxxxxxxxx

                  Comment


                    #10
                    Originally posted by 0485c10 View Post
                    Thanks Maxx for the support of the reply.
                    it makes a difference in how it will be read/interrpreted
                    I think you did a great job too and were right on the money.
                    This music is the glue of the world Mark. It's what holds it all together. Without this, life would be meaningless

                    Comment


                      #11
                      Hi Charlag,

                      My name is Tina and I was just diagnosed 8/17/11. So it sounds like we are both in the same boat. I am confused and angry. My neuro has left everything up to me to figure out. He told me when I was admitted in the hospital to research the meds and choose one. This was very odd to me because he is the Doctor not me.

                      I am 35 and a mom of 4 children. If you are interested in giving each other our contact info maybe we could use each other to learn from as we go through this together. I do not know one single person with MS to talk to.

                      Let me know

                      Comment


                        #12
                        My neuro when about to give me a diagnosis said, "Okay tell me what you have. You'd make a better neurologist than me." (I didn't tell him, although I knew a year ago I had MS). It's his job, and I wanted him to do it. The truth is, I wasn't insulted at all by this. I had done a considerable amount of research already, read all my medical records and studied my MRIs. When the radiologists report said 'normal', I said, "Please help me feel better about this. I have some questions about my MRI. Is THIS normal?" He said "No". Then, "Is THIS normal?" He said "No". Then after he had a chance to actually LOOK at the MRI because I had asked him to bring it up on the screen, he said, "This isn't normal either". TaDa. If I hadn't done the research, I'd still be waiting for a diagnosis because the radiologist had missed things.

                        Comment


                          #13
                          Hey Charlag, sorry to say but the only way you are going to get lots of attention at a Dr office is to go completely postal...
                          (and that kind of attention wont help you.)

                          It is more a matter of self education for most of us.
                          Your Dr can write you scripts but does not have the time to actually study you. That is up to you.
                          Sorry that sounds so cold but it is the truth as I see it.

                          I am afraid you have to learn what works for you by lots of trial and error.
                          It gets easier if that is any reassurance.

                          Hope you feel more relaxed soon.

                          Comment


                            #14
                            Originally posted by Coachtina22 View Post
                            Hi Charlag,

                            My neuro has left everything up to me to figure out. He told me when I was admitted in the hospital to research the meds and choose one. This was very odd to me because he is the Doctor not me.
                            This is exactly what my neuro did! Soooo frustrating! So then I go home and start thinking Tysabri and find out from people here that it's more like a "last resort" type of med and usually not the first choice when choosing a DMD. So why didn't the neuro tell me that???!!?

                            I am going to Seattle to be seen at the MS Clinic @ Virginia Mason and I am hoping with all my heart that they will be interested in helping to figure out a plan that works for *ME*, based on *MY* body, *MY* lifestyle & of course the signs/symptoms of the version of MS that *I* have.

                            I have no idea if I'm hoping for too much, but we'll see.

                            Comment


                              #15
                              Hi momof8--Hope you let us know how that turns out.

                              Comment

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