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Rest Area 51 Calling ALL in early yrs of MS Dx June 20 2010

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    #46
    Journeyman.........I was down there early April. I went down via WDC just perfect for the Apple bloss fest. I continued down via I-95 to I-4. Usually I use I-4 & I-75. I usually try and avoid Tampa proper. All one has to do is listen to the drive-time radio reports.........lol.

    Last I thought was the cross-town dominos were still falling..or was that SINKing? The high speed (train) was approved long ago in ancient history. Problem as I understood it was FUNDING. The way I hear it, Bush was against OIL saving trans methods, what OIL man would act against his personal interest/fortunes?

    JudySz.......... Now it's to the point, almost anymore it I have it....these days. Several canes, wear AFOs, have a pair of crutches, 2 walkers, a wheel chair, power chair and of course my scooter. Earlier this year my FamDoc said ti was time for me to have a power chair. My mobility has declined especially the past several years. I still walk some, but its limited.

    The power-chair was Rx'd by my FamDoc and was covered 100% by medicare and BCBS (medigap)...YEP jsut like the ads on TV. The rest I bought on my own. the wakers, crutches and W/C were used. The scooter I bought NEW via the web for half of the local price. Last year jsut shopping one mall store was too much. My legs turned to rubber (gumby-stix) before I left the store and I was SICK, nearly lost my lunch before I could get back to my car.

    cherishedtiger.........VV.E.L.C.O.M.E......Yes you can FIT here just fine. Sounds like your plate is full enough.....lol. Have you started or considered taking a DMD or CRAB yet? Even docs sometimes ahve problems sorting out what is and what is NOT from MS.

    For me being diabetic was a major obstacle to getting the formal MS Dx sooner, like decades sooner. Every neuro related problem was just dismissed as diabetes related, no relavent tests. Even back in the 80s I was sent to the VA shrink dept. They noted in my record I was "adamant" something else was wrong, just not showing up on tests. Decades later, it was the Va that gave me the formal RRMS Dx.........Kinda like getting the last laugh, only its not all that funny.

    Since you are in Cal-I-4-Ni-A, I guess the TIGER does not relate to the Tigers baseball team.

    RAIN....RAIN..did NOT stay away, will someone please turn the flood gates OFF?

    GOMER

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      #47
      JudySz...........I C U are near Cleveland...........

      I am signed up for a NSA convention over your way, closer to Sandusky tho. I tried 2 years ago, when it was in Grand Rapids MI, but was too sick to stay more than a couple hrs, so I missed almost all of the week long event. This year I plan on being better prepared. I am thinking of looking into a cooling vest even. I was clueless about MS or that some of my problems might be HEAT related. .

      GOMER It's ALL in my head, except what's in my spine.

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        #48
        Journeyman in FL

        GOMER

        Tampa won an Obama grant for the jet train. Now they want it to go from Tampa to Orlando to Miami and to Tallahassee.

        Would love to share a lunch or even just a coffee. Put faces with names. Just let me know.

        I promise to meet you outside of Tampa to prevent the stress and trauma. Maybe Brandon. J.

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          #49
          I was having a great day and wasn't going to come here. Now I've done it and read too much (not in our 51 pages, but 'out there').

          Wrong move of the mouse. I think I'll get a coffee.

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            #50
            Hye Gomer.

            we are between Cleve and Akron. Sandusky is further north and west, but on the lake. Nice old city. It has been really hot and humid, so I would definitely get yourself a cooling vest. Enjoy our dirty lake. If you have free time, take the boat to Kelly's Island and/or put in bay. I think one leaves right from Sandusky.

            JudySz

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              #51
              Thanks Gomer!

              Thanks! Glad to know I fit in somewhere! Because boy I sure dont most the time! My first doctor thought I was a hypochondriac, I swear she put that in my file. I was so happy when I got a new doctor and I then had my first real flare!
              As for the tiger - nope, not a tigers fan, actually not even sure what sport that is!!
              I came up with my handle when I was 16 Cherish (for my first name) Tiger (because of my love of tigers lol!) So cherishedtiger it became!
              Thanks for the warm welcome, feels good to fit in somewhere!

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                #52
                I just want to share my happy news - my middle son received his SAT scores today -
                2080!!!!

                I guess I will need to work a little harder to pay that tuition, but it's for a good cause

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                  #53
                  Originally posted by cherishedtiger View Post
                  Thanks! Glad to know I fit in somewhere! Because boy I sure don't most the time! My first doctor thought I was a hypochondriac, I swear she put that in my file. I was so happy when I got a new doctor and I then had my first real flare!
                  As for the tiger - nope, not a tigers fan, actually not even sure what sport that is!!
                  I came up with my handle when I was 16 Cherish (for my first name) Tiger (because of my love of tigers lol!) So cherishedtiger it became!
                  Thanks for the warm welcome, feels good to fit in somewhere!

                  I'm certain I had a big H in my file. When I was having my first known flair, I went there every day complaining. One doctor, the junior of my normal doctor spoke with me like I was a mental patient. Why would he go against his boss and waste money and time?

                  When I hadn't had a dump in 4 days and was complaining about that, the nurse practitioner said to eat more fiber. I nearly blew a fuse.

                  Oh well, it was no pleasure being right. My GP did apologize, which I appreciated. The idiot doctor didn't, though he spoke of a "health bias". My Arse.

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                    #54
                    BigA........Thar yago blaming it on MouSe again.....
                    I have NO need to 'guess' if "H" is in my file...They went as far as to send me to the VA shirnk dept back in the 80s 4 complainin 2 much. They did not want to bother with me either, not nuts, just "adamant" something else was wrong, just not showing up on tests......We were both correct! May I make a tiny suggestion, BigA.... get a new MouSe and train it..........lol

                    Back in the Navy I had pneumonia, was GOMER'd for over a week. The sickbay doc got tired of kicking me out, so one day he saw me waiting outside his door waiting for sick call. He came out grabbed my shirt and marched me down to Xray saying, "I'm going to PROVE there is nothing wrong with you" (refering to me).

                    He ordered the tech to do an Xray, then we went back to his office where he called the ambulance. When I got to the base hospital I was written up for CRIMINAL violation of UCMJ for "failure to seek medical treatment"! I signed the paperwork after requesting my sick-bay med recs for the previous 10 days.....Never did have to attend the Captains-Mast, never heard another word. Actually I was treated well in the hospital after that, VERY well. wonder WHAT, if anything happened to the doc?

                    MBC3mom ........ CONGRATS! enjoy it.

                    CherishedTiger.......Glad to have you here.
                    "the Tigers baseball team" Baseball is where a pitcher throw a ball to a batter and he tries to hit it with a stick, aka BAT. The Detroit Tigers baseball team is the team I was speaking of. Us GUYS do all sorts of funny things, like naming our TOYS (cars, boats etc), hitting & chasing little balls around on a fancy lawn, or spend hours on a lake trying to outsit little fishies for hours on end. Me, well I go around shooting up places and things with cameras for fun.

                    JourneyMan in FL, aka the southern sand bar....... I must admit to venturing into Ybore City a couple times, with camera at the ready fo course. The Trolley is a good way to see Tampa, cheap to. I still like to avoid rush hr traffic of course. Orlando is not much better, but I lived & worked in Orlando back in the 80s, so I know my way around there better.

                    JudySz....... I have NO intention of dipping in your (or any) dirty lake... They do have lots of activities planned. I will check and see what I can afford and what might be suitable for me to handle. One is a trip to the Carousel museam.

                    Tomorrow I am going to our monthly cruse nite with lots fo fancy old cars and such. Anyone else have anything interesting planned this weekend?

                    GOMER Have GoGo, will Go, have camera, will shoot.

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                      #55
                      Hi everyone,
                      QOTW Just headaches before my nasty flare last June. I have seen more doctors this year than I have in the rest of my life if you don't count 3 babies.

                      MBCMOM3 That is awesome congratulations.

                      Judy Sorry to hear about your change.

                      Jade

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                        #56
                        Today's appointments

                        This morning I went to my appointment at the VA. I didn't know exactly what is was for, I only knew it had to do with my appeal for a higher disability rating. Well, I met a very nice lady who told me that it was a psychiatric evaluation for my depression and those mind issues associated with MS. I think it went well, but it will be a couple months before I find out if my rating will be increased.

                        This afternoon was dermatology at the VA with a very nice doctor. She asked lots of questions. For about 5 or 6 years now, exposed skin itches like crazy when I am out in the sun. But over the last year I have been getting hives, too. Of course, I also have what was declared excema back in the 80s. This doctor wasn't sure what was up, she said there were alot of possibilities and she wanted to do tests. I said sure, so she cut a small patch of skin off to do tests and ordered blood tests(7 tubes of blood). She did a local anesthesia on my arm and said the anesthesia shot would burn, it burned less than a rebif shot. Then as she was cutting she asked about the pain, I didn't feel it and told her I had high pain threshold. She did say the hives might be from the rebif and I wonder if that will mean changing to a different drug.

                        The one thing I have noticed about doctors since my MS DX, is that they actually listen to me and do not blow me off. They listen to what I say and suggest options. I have had skin issues before, but doctors refused to do tests and would just say I was allergic to something I was eating or touching and I had to figure it out myself. I have similar stories about other doctors, too. But, I think why did it take an MS DX for doctors to listen, why was I so unbelievable before, so unimportant? And what about those that are undiagnosed with MS or something else that are being blown off? I know there are those that fake it and are hypochondriacs, but I never went begging for drugs and I rarely went to the doctor unless I was absolutely really sick or hurting. I also wasn't an emotional mess crying and screaming, except as concerns the nurse from the first neuro (throwing in her the pit now). Maybe we could tell our craziest medical nightmare for next week's question.

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                          #57
                          MBCMOM@'''congrats. It is such a good feeling when our kids succeed.

                          Gomer, All I know is that there is a great old carosel on Put in Bay. We ride it every time we go. I am surprised you do not want to swim in our lake

                          judySz

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                            #58
                            JudySz.........WHY would I want to swim in any polluted lake? Anyway..I have probably FORGOT how to swim, its been so long, I don't even have a swim suit. Needless to say, I also lack a waterproof camera, nor do I have an underwater camera. I may VISIT put-in-bay, but ya ain't gonna Put-ME-in Bay...........lol

                            Dulcinea714......... REMIND me, Sunday to do a SnakePit special. We can all, I am positive, come up with at least one deserving subject to feed to our snakes. (most likely more than one). Our SnakPit is bottomless and we have an unlimited supply of vipers ready to strike.

                            I have dry skin w/Psoriasis, we KNOW its Psorasis because it was biop'd.

                            BigA......... I hope you are having a better day to day and have a great weekend. If ya need help training a new MouSe, I am sure we can find a trainer somewhere to help...lol

                            JourneyMan (the one in FLA).......Q 4 U?..........What happened to my fav radio station? Last time I was down, in April, WSJT, 94.1 was NOT playing my smooth Jazz anymore. Rock/top xx stations etc are a dime a dozen, it was a refreshing option. I do have some of their CDs I could play.

                            JadeVictoria.... You are NOT alone here when it come to having a long list of docs these days. I have a primary/FamDoc, a GP at the VA, a endo, neph, neuro/MS specialist, neuro-opty, cardio, hoof-doc, a foot-ankle ortho, ENT......I must be leaving someone out. Just hope they treat you well, if not just send me to our SnakePit for a treatment!

                            GOMER

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                              #59
                              Gomer,

                              i'm having a great day, but I still don't get your MouSe joke.

                              But I am reminded how dire it felt when I got my diagnosis. Many of you will have had a flair and got better, but I had a flair, fight and diagnosis which all took about a month. I also had a bad experience with my first Neuro who was only able to take about 15 mins with me.

                              "Hi, you have MS. Look, here's a funny colored patch on your brain. Here's one on your spine. But you're lucky because we have DMDs now which we didn't have 10 years ago. Now they're not cure, but they slow it. They're all equally effective, here are the marketing materials, go ahead and choose one. Go downstairs for Steroids. Bye."

                              I didn't even know what the steroids were for and whether they were going to make my muscles grow and nads shrink. All anyone talked about was a metalic taste and not being able to sleep.

                              No metalic taste, sleep was fine, but no one asked if I had any blood sugar issues and so I wound up in the ER (cost me $1500) because I was pissing sugar.

                              Wow. I'm still bitter, aren't I?

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                                #60
                                Hi all, hope everyone is having a good weekend. Cruse nite was good and the weather was PERFECT.

                                BigA.......
                                ..good ole high blood sugar is a very effective SLEeeeeP aid, unless ya gotta get up a few times per hour to pour the excess down the drain. Didn't they ask on a questioneer about diabetes and other health issues? When I see a new doc they always want the book.....

                                MouSe........ Maybe my cog-fog is overactive, but I think it was related to a earlier posting of yours about reading negitive stuff on here and blamed it on a wayward MOUSE?

                                Well last nite I changed my routine a bit. Instead of using the autoinjector device I took my Copaxone the ole fashioned way. I simply injected it by hand, like I have been shooting insulin for decades.

                                GOMER

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