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Time to vent...

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    Time to vent...



    My new Ms specialist, who I saw on the 7th, had me talk with his Case Worker specialist. She gave me her email, and said that's the best way to get in touch with her. On the 11th, I emailed to tell her that since I'd moved, all my doctors in the other city were no longer willing to prescribe, and I was running out of Klonupin, Zanaflex, and the new doc and I had discussed restarting LDN. No response.

    Finally, I call Wednesday...his nurse calls me back..Thursday. Turns out the Case Worker is on vacation. I tell the nurse I need meds. She says she'll talk to the doc. Late thursday afternoon, she calls back and says he'll autherize a script for Zanafle, but not the others. Okay,LDN I've been off for 6 weeks, but where do I get the Klonupin. Ask your family doctor, she says. I have a couple refills on the Klonupin left, so I did manage to get that yesterday, but the pharmacy doesn't deliver on weekends (assuming she faxed the script by Friday) so I won't get the Zanaflex till next week.

    And, I'm going in the hospital Monday and Tuesday for a, that makes it Wed. before i get more pills.

    With luck, I have enough to get me thru the hospital stay...but, my god, why does it have to be so hard?

    in the meantime, I had another "episode" last night. Dragged myself into the bedroom, as normal with my walker, but couldn't get into bed. Legs collasped on second try. Two attendents came and picked me up off the floor and put me to bed. No real damage, except I ripped the big toenail off the other foot.

    Then, after they left, I started sweating...removed the covers and slept until 3am. Woke up...had to pee...did my normal shuffle to the edge of the bed...peed...did my normal use my cane to lift my leg, got back in bed, and slept until 7am. Got up this morning, made coffee...everything is back to "normal".

    What the hell is going on...and why won't any doctor look past the wheelchair? For that do I get them to build up a sense of urgency?

    You will most likely not be allowed to provide or take your own meds while in the hospital. They should supply your medications (as long as the admitting physician writes those orders), and you can try to get that physician to also write you new prescriptions for use at discharge. They are required to do "medication reconcilliation" to confirm which meds you are normally taking both at admission and discharge, and discuss this with you.

    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


      I asked the gastro guy's nurse. She said "bring your own". I will, just in case.

      And, since he is a gastro guy, I'm going to guess he'll be reluctant to prescribe Klonupin.

      My feeling is I'm going to have to find a non-MS specialist neurologist to deal with my "essential tremor"...which is why I started Klonupin. The MS specialist did remark when we talked that Klonupin was not particurly useful in ms. And, of course, since I've been taking it for 10 yrs now, I'm probably addicted.


        Sorry, I thought the poster was from Canada, never mind


          Originally posted by SCI-Nurse View Post
          You will most likely not be allowed to provide or take your own meds while in the hospital.(KLD)
          You were right, of course. they had to provide them.

          And, of course, they screwed it up. I take 3mg Clonezapam, twice a day. It only comes in 1,2,4, and so tablets. So, I take 3 - 1mg tablets. They read take as 1mg, 3 times a day. Took most of the stay to sort that out...


            Originally posted by SCI-Nurse View Post
            You will most likely not be allowed to provide or take your own meds while in the hospital. They should supply your medications (as long as the admitting physician writes those orders), and you can try to get that physician to also write you new prescriptions for use at discharge. They are required to do "medication reconcilliation" to confirm which meds you are normally taking both at admission and discharge, and discuss this with you.

            KLD, some meds are not normally available even in large hospitals. I have found that no one seems to have Ditropan XL and it takes several days for a doc on top of it to get this fixed. If a probiotic is something necessary to your regularity I'd take it with you too. I go in with everything written down and then doctor's orders meet the hospital's formulary...that talk on admission becomes a "we don't have that". At that point I'll tell them I have enough for my stay in my bag and they normally look at them and ok my taking them when they can see and notate it. Same holds for the Magic Bullets and Enemeeze if it will be a stay of more than 2 days and you're not there for a colonoscopy or other bowel surgery that requires a clean out prep. Bring them along.
            Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

            Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.


              Thats true for specialty drugs too. When David is in the hospital I have to fight tooth and nail to be able to administer his beteseron shots. They say they don't have them but then they want to do the mixing and administer them. I always fight that no, I know how its done and I will do it. The last thing I want is someone who knows nothing about it to give it to him.


                Let me start by saying that I realize there are people on the board here with much, much more to deal with than I do...but...this is me, I'm talking about, and I'm not happy.

                Pre-2000 heart attack, I was 6'-2, 360 pounds. Dumb. 2004, after 4 yrs of cardiac rehab, I was 260 to leg press 800 lbs, and bench 400. 2009, I'm using a cane and walkeer, and the MAYO says I have MS...suddendly appeared at age 64. Last week, in the hospital for the colonoscopy, their magic bed says I now weigh 195. I've lost a whole person!

                Legs are very weak...barely support me when I shuffle from room to room...and if they start spasming when I'm walking, I slowly collaspe to the floor.

                I've had 3 different nurses/case workers offer to get me physical therapy, but when i mention i have an appointment with a Pt Doc April 1st, they say, okay, let's wait and see what he prescribes.

                i've got a car to sell...a house to sell...a job to keep. I need things to start moving forward.

                And, I don't want more doctors who treat the symptoms...I want a doctor who's willing to look for the cause.

                Any good Infectious Disease specialists in Des Moines?


                  So I go to the PT Doc on Monday, and he actually listens (a bit, anyway) and agrees to refer me to an Infectious Disease Specialist. So, I go see the ID guy today. We talk about maybe I picked up Chaldmydial Pneunomina from our cat (who had a "chronic upper respitory infection" (perhaps, C. Felis)) which would explain why I developed MS so late in life and quickly.

                  Then, we talk about 7 yrs ago, when we left Ohio, the neighbor on one side of us also developed MS about the same time, and the neighbor on the other side was DX'd with Muscular Dystrophy and his wife with vocal dystonia, about the same time.

                  Hmmm, he says. Two very good possibilites that I do have a bacterial or even a viral infection that has manifested itself in SPMS.

                  Yes, says I. Give me the antibiotics for CPN, and we'll see what happens. And the probiotics to put back the good bugs.

                  No, says he, our practice doesn't really get into the experimental stuff. Maybe I can get you into a study somewhere. Let me look around, and I'll let you know.



                    Fight on brother, they can treat us like the fucking scum of the earth or mere playthings but they can't and won't take our humanity.
                    "The problem with self improvement is knowing when to quit." "Diamond" David Lee Roth.


                      So, the ID guy at least goes to and reads "some" of the info there. He calls me this morning and says "Its kind of beyond my knowledge, but I did pass it on to our MS specialist. Why don't you go see him...."

                      Okay, yet another doctor....


                        I know I said I was going to keep on fighting, but I'm right at the point where I'm wondering which fight. Keep looking for a "cure" or learn to live with it.

                        Last week, the OT from one organization brought a power chair to my apartment. Getting in and out was a bit of a challenge, but i'm pretty sure I can master that. The ease with which I could zip from room to room was delightful and ii can actually get to the bathroom sink and my computers without fear of falling over. Jusr need to see what my insurance will pay for...

                        Friday, a PT visited and we went thru some "move you some sit ups". Saturday, my legs still won't move, and my muscles hurt. I know my legs are atrophing from disuse. Walking (shuffling with a wheelator) is getting harder and harder. Insurance is balking because I went thru PT six months ago and "platuaed". If they don't pay for PT, they won't pay for home aid to get me an occasional shower. Whoopee...


                          Next verse. So, the PT has been "discussing" with my insurance company whether or not they will pay for home PT. "No", they say, "he's platued".

                          At the same time, the powerchair people have been talking to the insurance company. 'probably", they say, its just a matter of figuting out which whistle and bells.

                          So, PT calls to tell me that insurance says once I get the powerchair, they will authorize PT visits again.

                          What am I missing? my legs are extremely weak because I ca't exercise without, I get a powerchair to help me move around the building...then I can get PT to help me strengthen my legs so I can walk withou the power char. Right....


                            What is your insurance? Are you on Medicare? Do you have a secondary insurance from your employer?

                            I have found that if you have a PT willing to fight/appeal, then you can often get more PT. You just need to figure out some reasonable goals... what needs help.. what has gotten worse. And you need that helpful PT!

                            You haven't plateaued.... you have declined again (a lot of things have happened for you in the last 6 months) and you need to return to your prior baseline. You have a new living situation and need PT for safety to work on all your transfers in your new apartment. You are getting a new wheelchair and need wheelchair training.

                            Unfortunately the wheelchair will probably take many months to come. The PT that you will get then will be for wheelchair training (officially).

                            So you need is someone (PT, doctor) willing to fight for you and push the insurance company. And you need to fight for yourself if they are lazy.

                            By the way, there was recently a big lawsuit against Medicare/the government that was settled last year.


                            The jist of it is that PT should be covered by Medicare for maintenance, for people with chronic conditions (like MS, SCI etc..) that need ongoing PT to prevent decline.

                            The article says .... Medicare will pay for such services if they are needed to “maintain the patient’s current condition or prevent or slow further deterioration,” regardless of whether the patient’s condition is expected to improve.

                            That is a huge concession by Medicare, which in the past would not cover maintenance PT. And if Medicare has made this concession, then private insurance will eventually have to follow. You can mention the lawsuit in any appeal letter.

                            My father is doing PT at least 1-2x per year. By emphasizing how this actually SAVES your insurance company money can help. More PT means fewer falls, fewer trips to the ER, fewer hospitalizations.

                            That being said, it is likely you will need to start paying out of pocket for your home services in the near future. Then probably once or twice a year when things are worse, you can qualify for a round of insurance paid home services.

                            Sorry these things are so hard... It really stinks.

                            Are you still working? Maybe it's worth talking to Vocational Rehab and emphasizing to them that you need help/therapy to be able to continue working.

                            I must say I am very impressed with your drive and strength.


                              My doctor noticed I had a lot of clonus on my visit a couple days ago. she said why don't you try a small dose of vallium for that? Iv been reluctant to take more of something to be dependant on, but she said it won't hurt to try it. It was pretty bad that day.

                              My script says clonazapan. I looked that up and it says it is klonopin. so is klonopin basically vallium?