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Calling all limbolanders-limbo check in 6/14/2011

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    Calling all limbolanders-limbo check in 6/14/2011

    Hi all limbo landers! I am back from my trip and it is time to limbo! So come on everyone and come to the island. Grab a cabana boy or girl and order something to eat and drink. Grab a hammock and tell us how your week has been.

    I see by looking at the last thread and the threads on the main board that it has been a hard week for most on the island. I am sure we are all ready to scream. I hope this week is looking better and that you are feeling better.

    Are there any doctors apts this week? Any tests this week? Any doctors or nurses that need to swim with the sharks? Remember that if you need to scream to go to the middle of the island. Remember that you never scream alone.

    In island news - Welcome to all our new islander.

    If you are undiagnosed then this is the place for you. Come and tell us your story. The island is waiting.

    We had a good trip. It did not rain at all while we were at the beach. I was hot,hot,hot but the pool helped with my heat intolerance. So i would take a dip in the cold pool and then go to the beach with my fan and umbrella. It worked out grate and i could be with my kids and my DH.

    I do not have any apts this week. Had one last week and i have many next week as i am getting ready for hysterectomy on the 29th.

    I don't know if i had told you that after all my bladder test that they have told me that i have neurogenic bladder. I did not want to hear that. So it is just something to add to the list of neurological stuff. I was very upset at first but i am ok with it now.

    Well that is all that is going on in my world. I am glad that the kids are out of school and we have free time. I will check back later. Lots of ((((hugs)))) to everyone.

    #2
    Dr visit

    I posted a bit on another thread...but here it is...
    I had an appointment today with my new GP who sent me to a neuro a month ago. Although the neuro wouldn't say yes or no to MS and said very little to me, he did tell my GP that he does not believe I have it.

    The GP was puzzled and disagrees. He wants me to see a different neurologist, especially after I described to him that the neuro wasn't willing to explain a lumbar puncture to me and was angry that I had questions..more angry that I turned it down.

    My GP was great. He took his time explaining the lumbar puncture, agreeing that doctors sometimes forget that though they do this stuff every day we don't do it everyday. He is willing to help me find another neuro, but I told him I had already looked and was thinking about a particular MS specialist group. He knew of them and heartily agreed that it was a good choice. He even said he would get my records from the neuro so that I don't have to deal with them.

    Then later he realized he hadn't given me results from blood tests last month. They were missing from the file because the lab hadn't sent them in. They show severe
    B12 deficiency. He was so happy since it could explain some of my symptoms. He gave me a B12 shot and told me to take supplements of B12 and iron for three months and come back for recheck.

    Not sure if he meant for me to still pursue the MS specialist or wait to see how the B12 turns out.

    I've thought about it all day, started a new thread on it, talked to husband and a couple of friends. I think I'm going to go on to the MS specialist while I can, just in case. I had a great GP about 9 or 10 years ago who was trying to find answers and then left private practice to go into research. His replacement wasn't interested in figuring out my problems.

    I know this could be just the B12, but I want to be as sure as I can about the correct diagnosis while the ball is rolling along since I've had such trouble in the past trying to find a doctor who didn't blame this on something else...stress, busy time of life, having too many children, depression, poor diet, husband's illness, etc.


    I'm feeling more hopeful to have a doctor that I liked two visits in a row who believes my symptoms and wants to get to the bottom of it.

    It amazes me that my husband has never gone to the doctor complaining of a problem only to be asked how many kids he has, is his marriage okay, is he depressed, does he eat right, is his wife sick... He never gets the "its all in your head" treatment. It is nice to not get that this go around.

    Comment


      #3
      More questions, no answers yet.

      I posted a few weeks back about my sx (e.g., ataxia, numbness, muscle fasiculations, weakness, vibrations, cognitive problems, constipation) thinking it may be related to MS. Nuero ordered MRI of the brain and found 1 lesion in the cerebellum, but states that it is "non specific."

      Neuro sent me to get an MRI of my c-spine and t-spine which did not show any evidence of any demyelinating conditions. However, the MRI of my c-spine showed moderate stenosis. Neuro believes that my problems can be accounted for due to the cervical stenosis and I was referred to a neurosurgeon.

      After consulting with the neurosurgeon, he does not feel that the stenosis accounts for all of my sx (especially the dizziness/vertigo and cognitive problems), and believes that I may have an underlying condition, such as MS in addition to the stenosis. He wants me to proceed with an EMG/nerve conduction study and speak with the neuro before agreeing to do surgery for the stenosis.

      I'm feeling frustrated as the neuro does not believe I have MS, but now the neurosurgeon believes I may have it or something similar to it. Any suggestions?

      Comment


        #4
        hello!

        hello limbo!
        actually felt a tad better today, fever broke for a while and didnt return til late tonight! muscles aren't jumping anymore, so its just the pain and numbness, which is easier to bear!

        MVM, i have a neurogenic bladder also...and that stinks.... but hopefully theyy can manage it for you!

        and i apologize to the poster below you...can't remember your name (cog fog..lol), but some folks with ms have b12 low, as well as ms..so better safe than sorry, neuro visit sounds good idea!
        your horse must be fast cuz' you were haulin' ***** when I passed you!!!!

        Comment


          #5
          Why me, keep searching for answers, if necessary, go to another neuro who is willing to give you a 2nd opinion on your MRI results.

          I had a recent 2nd MRI which showed no recent lesion activity, just the MANY that were there the first time. We went over the 2 pictures...each slide...side by side...one by one...Holy cow! I have a lot of lesions! They are small, but they are there! Anyway, still no clinical dx, but I really think I have it & it is just not active at the moment. We are switching me to Topamax to control my sx instead of the gaba bc I was gaining weight & I didn't like that. I've been transitioning for 1 wk & altho I am sleepy & it doesn't seem to control my sx as well, yet, I am not as hungry & I like that! So I am willing to give it another few wks before making the final vote!

          I have another MRI in 8 mos & I see the neuro in 10 wks to follow up the new meds. A new sx for me in the past couple wks has been weakness in my arms. Not liking that one at all!

          Hope you all keep hanging in there & have God blessing your days!
          "God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference" Reinhold Niebuhr

          Comment


            #6
            Good Morning Island,

            MVM- Glad you had a nice trip its good to get away.
            Stalo- i've been on Topomax for a few yrs now to control migraines. Its the only medication that works for me in that regard. I hope it is helpful with your symptoms.

            Barelracer- glad you are feeling better. I read your post yesterday. Sounds like you were in rough shape. I've had a lot of those symptoms all at once before (minus the fever), so I know it can be rough.

            Why Me- I would make sure that your Nuerosurg. is in good communication with your neuro. I've had one doc say its one thing, but not report it to the referring doc before. Very frustrating.

            Purple- hang in there. I hate it when docs throw up their hands and says its just anxiety, stress, etc. I'm in the midst of an "Its all in your head" battle with my GP and I'm seriously considering a new GP.

            As for myself, I've had a pretty good week so far. Until today. I woke feeling like a ton of bricks fell on my legs. I'm hoping it goes away once I get moving. My wife and were able to get away to Cape Cod this weekend for our 10th anniversary. It was still nice to get away just the two of us despite the rain all weekend. No kids. No worries. Just relaxation. Something we haven't done in a long time.
            I'm looking forward to my birthday this weekend and Father's day. No doctor's appointments this week.
            I hope everyone has good week.
            jsox

            Comment


              #7
              getting a new GP

              jsox,
              This is number 5 or so in my count of GP's in the last 9 years or so. Get a new one. Don't waste time with a dummy. They don't usually change their mind once they think it is all in your head. It has made all the difference in how I feel. It is so nice to have a doc who doesn't think you are a head job.

              It is difficult to change for me. I hate to go through the same song and dance again and again...and paying for the insults and ignorance is simply awful.

              Comment


                #8
                Hi Purple,
                Well this is my second GP in five yrs. I left the first one because I could never get an appointment with my actual doctor. They would always send me to his PA. My current doc... well I told you about her. My co-workers have recommended a new doc who practices "functional" medicine. I'm going to see him at the end of July. The problem is that he's over an hour away. Not very convenient if I need to get to him, but if he is as good as my co-workers say then I might just switch.

                -jsox

                Comment


                  #9
                  Stalo-I've been on Topamax since January for my hand tremor. It has been very helpful for me. I hope it helps your symptoms. I've lost 20 lbs (I'd gained 15 when I was on lyrica before) so it is a nice side effect.


                  I am just hanging in there right now. Next Gastro appt is at the end of the month. All my test results have been normal so I'm betting she is going to say my issues are connected to my neuro stuff.

                  My trip went well and now I am playing catch-up, while being exhausted and sore. In all, I feel pretty decent all things considered and am taking advantage of it because I know when the real heat hits it will be a different story. I'm trying to get all my ducks in a row before then.
                  Erin

                  doing the Limbo since 2005

                  Comment


                    #10
                    New Limbo player

                    Been lurking here for a few weeks...well here goes
                    Have been having lots of balance issues and falling recently. I can't think straight much less spell. Forget what I'm doing by the second. I was looking down a hallway on the way to get my lab drawn and thought wow I bet I could just lay down and go to sleep right here. I 33 years old and walking down a long hallway feels like a mountain. Let's just not discuss that it was 108 outside today in the Texas heat...and the new job requires me to be in and out of the car...my black car with no tint!!!! I thought it was the new job and wearing heels but thinking otherwise now that my PCP ordered a CT. I had weight loss surgery in October and thought the dizziness was related to a nutritional issue but my lab work looks stellar. No anemia, b-12 looks great and thyroid looks pristine. Went for the CT today but may push for an MRI if they report nothing.
                    The really unfortunate part of this is that I am a nurse and I specialize in Neuro and physically rehab so I know way too much. The fortunate part is I know who to go to and how much to yell out to be my own advocate. I have been afraid to say "MS" but I know these symptoms way too well. Crossing my fingers that I am just a hypochondriac nurse but knowing that this is not just in my head.
                    Wishing everyone the best and for answers in your own journey!
                    Thanks for giving me a place to feel like I'm not a nut!

                    Comment


                      #11
                      No diagnosis today

                      Got results from my cervical MRI. Have a significant bone spur which neuro said could expain left arm pain or numbness. Ironically I have some left arm issues but not many. No mention of leisons and MS did not leave his lips. When I reminded him of all of my symptoms (edema, cognative, jerky body movements, numb feet and fingers, fatigue, loss of balance...) he reluctantly ordered another EEG which is not until late this month and I can't get back to see him until July 6th.

                      My questions: 1. Do they ever perscribe medication for fatigue without a diagnosis? 2. When is it time to get a second opinion?

                      Comment


                        #12
                        Hi Lorimo,
                        My questions: 1. Do they ever prescribe medication for fatigue without a diagnosis? 2. When is it time to get a second opinion?
                        In my experience, at least with my docs anyway, is that they don't prescribe meds unless they find something. My PCP did prescribe Baclofen to help with the spasticity, but I don't take very often because it makes me more tired. My Specialist wont Rx anything. Its been really frustrating. In regards to your second question if you don't feel you are getting the answers or help you need then I would definitely get a second opinion.

                        Good luck,
                        -jsox

                        Comment


                          #13
                          Welcome, Jenn...you are not a nut!!

                          Lorimo, have you had all the blood tests ruling out everything else? Have you had a brain MRI? Yes, they do RX meds to treat sx even if you haven't been dx with anything. However, he may not want to just throw drugs at something when he doesn't know what it is. If you have ruled everything else out...lyme, lupus, vitamin deficiency, thyroid, etc...then, seek a 2nd opinion. This, of course, is my humble opinion only.
                          "God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference" Reinhold Niebuhr

                          Comment


                            #14
                            More....

                            I picked up my MRI, VEP, BAER reports to take to the new neuro in July. I took a look at the MRI pictures and report though I knew I wouldn't understand it.

                            Way back when all this started, thyroid was my guess. I begged doctor after doctor to do more than the TSH test. All said no because the TSH was normal.

                            Guess what?!?! The MRI results show a heterogeneous enlarged thyroid and a few other things that my neuro didn't see fit to tell me nor my GP.

                            At my GP appointment earlier this week, he only had a letter from the neuro that there was nothing on the MRI's. He had ran a TSH test, but it was normal.

                            Note to self: ALWAYS get a report on every test to look at even if I don't think I'll know what it says. ALWAYS get a copy of every blood test done, not just the copy they give you to take to the lab, but the actual report the doctor gets.

                            Between the B12 and thyroid, these may account for all of my symptoms especially since it has been ongoing for so long.

                            By the way, thyroid disease runs in my family. I have put that on all of my medical records and verbally stated it to every doctor except the new one (because I thought it was a dead issue after so many years of asking for it to be checked and being told it was perfectly fine). My mother's and my sister's TSH is always normal, but the other parts of a full thyroid panel are where they find the problems for them.

                            It would have been nice if the neuro had thought it important to share all info on the test reports rather than just those in his specialty, especially since I specifically asked if there was anything on there that isn't related but that I might need to know about.


                            Just one more reminder of how much we must self-advocate, but how difficult that is if the doctors are not cooperative.

                            Comment


                              #15
                              Happy Friday limbo island!!

                              Shallwearpurple - Good to see you. I am glad that your read your reports that you picked up. You are right that it is a good reminder to be a self-advocate.

                              I hope between your GP and new neruo you can get some answers soon. Keep hanging in there.

                              Lots of ((((hugs))))

                              Why me - Good to see you. I can see why you are frustrated. I would look for a 2nd opinion on your mri.

                              Do keep looking for answers. I know it is frustrating. Just know we are here for you as you keep looking for answers.

                              Lots of ((((hugs))))

                              Barelracer - Good to see you. I am glad that you had a good day and were feeling a bit better. I hope you have more good days you and your son.

                              It does stink to have neurogenic bladder.

                              Lots of ((((hugs))))

                              Stalo - Good to see you. I am sorry that you still don't have a DX. I am glad that your neuro went over all your slides with you one by one.

                              I pray that your next mri will get you some answers. I hope your arm weakness will get better. I have this problem also.

                              I hope the topamax will get to working better soon. I am glad that you are not as hungery as you were on the gaba.

                              Lots of ((((hugs)))) and i hope you have a blessed weekend.

                              jsoxfan618 - Good to see you. Happy anniversary i am so glad that you and your wife were able to get away with out the kids. Happy B-day and fathers day also.

                              I am hope that you are feeling better and that your legs will feel better as you move. I am glad that you are haveing some good days.

                              Lots of ((((hugs)))) and have a great weekend.


                              Photomama - Good to see you. I am glad that your trip went well. I am glad that you are feeling ok keep going and working at getting all your ducks in a row.

                              I hope you will get good news and your apt at the end of the month. Let us know how it goes.

                              Lots of ((((hugs))))


                              jeen25nurse - Welcome to the island. I am glad that you have been reading and that you posted. I am glad that you know that you are not alone as you look for answers.

                              You know you are not a nut. I am glad that you know who to go to and who can help you. Do reach out to them and get some answers.

                              I hope that your CT will give you some answers. If you need the MRI then find someone who will get it for you. I know wtih you being a nurse you know a lot of what is going on. That is good but i also know that you can know to much of what is going on.

                              Keep looking for answers and know that we are here for you anytime. Keep posting and i hope you will find answers soon.

                              Lots of (((((hugs)))))


                              Lorimo1 - Good to see you. I am sorry that you did not get a dx at your visit.

                              I do know some neuros will help with fatigue. I know my neuro does. As for your next question if you feel you need more answers and you are not getting any and your neuro is not running tests that you need. Then it is time for a 2nd opinion.

                              I hope this helps. Lots of (((((hugs)))))


                              Well i am off. Have a good weekend limbo island. Lots of (((((hugs))))) to everyone.

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