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Thread: OT March Chit Chat

  1. #21
    Distinguished Community Member SalpalSally's Avatar
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    Yeaaaaaa Peg.

    Good luck with Lemtrada, Cherie.

    ((((((Joan/Agate)))))) ouchie!

    I'm still on the pretty good side today. Hand still feels arthritic, but working
    through the pain on it. Hope it will lessen some.

    Be well and happy all.
    Last edited by SalpalSally; 03-03-2016 at 05:26 AM.
    Love, Sally


    "The best way out is always through". Robert Frost







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  3. #22
    Distinguished Community Member agate's Avatar
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    Peg, it's methotrexate infusions once a month that you're getting, I think? It would be great if these turn out to be helpful.

    Special thanks to stillstANNding for the advice about ice and heat in connection with my fall. I'm doing much better today.

    Sally, you sound as if going home is out of the question for you. Is that really the way it is? If so, I'm so sorry!!
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  5. #23
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    I saw the first spray plane today. So spring is coming!!

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  7. #24
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    Peg, such good news so far!! I love the "little more energy" part. I could use lots of that.

    Agate, glad you did not hurt yourself badly. Also glad to know we have "Dr. Stillstanding" around to help us when we need it.

    Jeanie, AT&T should have their behinds kicked for treating you so badly. However, I am convinced that all internet, phone and cable companies are like that. Glad you were able to get it straight.

    Cherie, MSLifelines came through for you. Now I guess you just have to decide between the two medications. I understand what David is saying about not waiting until you go further downhill. On the other hand you could look at it from the perspective that if you stay on Rebif and are diligent about it maybe you will not go downhill that much and will have Lemtrada to fall back on if you need it later. I don't know what the answer is.

    I saw my Neurologist a week ago today. He is always so busy, but that particular day I think I was his last patient. He set and talked with me for just over one hour. I was amazed. Of course I have gotten to know him over the past 16 years, so it was good to have an opportunity to chat for a change. We were not talking about me or MS - just about what he is going through (and all Doctors) with the government and insurance companies. We discussed how Doctors use to treat their patients and now instead of spending that time with them they HAVE to spend it doing paperwork on the computer. And he says he HAS to - there is no choice. I did inquire about prolotherapy Cherie and he told me that while it does cause inflammation, that his personal feeling was that it would be localized and not systemic.

    It is time for Howie to get his self back on. Vicky, you are right we could talk about him, but then if we did and he just happened to be sick think how bad we would feel. Besides we are really very nice people.
    Virginia

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  9. #25
    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Gary View Post
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    I saw the first spray plane today. So spring is coming!!
    Some people watch for robins. Some watch for spray planes.

    Virginia, your neuro talked to you at some length for the first time in 16 years? I realize that you were pleased that he took some extra time with you and maybe my standards are ridiculously high, but it seems to me he could have spent the time showing more of an interest in your concerns, not unloading about his complaints.

    I'm sorry but doctors have unloaded on me in the same way--about how difficult their life is with Medicare paperwork and insurance companies. I'm glad that they find me to be someone they can talk to, but if it had been a doctor who'd never had much time in 16 years, I think I'd have tried to change the subject over to the topic at hand--me--the reason I was paying for the doctor's time.

    You go to the trouble of getting yourself to the doctor, which isn't always easy, and you probably could have done something more interesting with that time--? You or your insurance are willing to pay handsomely for the doctor's time and expertise, and he spends that time talking about his concerns?

    --Don't mind me. I'm just feeling grouchy, maybe.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  11. #26
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    Quote Originally Posted by agate View Post
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    Some people watch for robins. Some watch for spray planes.
    Sounds like Rachel Carson in, "Silent Spring."
    There comes a time when silence is betrayal.- MLK

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  13. #27
    Distinguished Community Member SalpalSally's Avatar
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    Joan, miracles can still happen. I depend on that!!!
    Love, Sally


    "The best way out is always through". Robert Frost







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  15. #28
    Distinguished Community Member Cherie's Avatar
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    Doc says he is comfortable with Lemtrada as he believes I understand the risks better than his average patient. However, since my last dose of Rituxan was only 2 months ago and it suppresses B cells for 4-6 months unless one is not responsive to it, he will not order it until he is sure B cell count is safely back in normal range. I came home with a script for lymphocyte panels to be done monthly for the next 6 months. We will meet again to order Lemtrada when they are at a safe level. He is also now teamed with a compounding pharmacist and selling Biotin for about $60/month than the $100-140/month that most compounding pharmacies sell it for. He offered to email me the studies on it and information to share with others. He did say it is not a treatment for MS and so far he has not seen a big impact in his patients taking it but many wanted it and had trouble affording it so that is why he got into the pharmaceutical end of it.

    As of yesterday there were more than 80 folks signed up for tonight's MS awareness event in which I am speaking.

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  17. #29
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    Agate/Joan I stated my post very poorly. My Doctor took much time getting to know me 16 years ago and off and on through the years when he could and felt I needed it. He really was not unloading on me. We were laughing and talking and also joking. I worked for Doctors for a year and a half at one time, and I told him how we did things in that office. This was before all the government and insurance paper work came about. He knows me well enough to say pretty much what he wants to say. The reason I was amazed was because he has not had that kind of time in a long time.

    He was laughing about what it would be like when he got to be old and had to go to a Doctor. He said he would be this "old Doctor" going in with all this paper work and trying to tell a young Doctor what his problem was. In telling it he said "when I get old and retire". I immediately interrupted and said in quite a firm voice "don't you even think the word retire". I told him I would be sitting on his doorstep every six months if he did, so he better not give up his license. He told me he was young enough that by the time he could retire I would be dead. So just wanted to let you all know it was just bantering and joking, etc.

    He can be a bit moody, but I can tell when he is and this was certainly not one of those times.
    Virginia

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  19. #30
    Distinguished Community Member SuzE-Q's Avatar
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    Glad your treatment went well, Peg! Hope your energy continues to improve! I'm interested to know of your side effects, please let us know.

    So nice to have such a frank conversation with your neuro, Virginia. We do develop relationships with our doctors, it's nice if we can appreciate their frustrations too. I don't particularly like mine, but sometimes the devil you know (how to handle) is better than...I see mine has only nominal kickbacks...whew. Thanks for that link, agate. Why the hesitation to share it here? I do feel closer to my pcp when she shares her own frustrations, I can be more understanding when she's sometimes hurried, or appreciate it when she spends extra time with me, or shares what's new with her kids. I love having more than a cold, clinical relationship with her. I draw the line at sending holiday greeting cards to her office like some patients do. She IS my doctor, not my friend. But a good relationship can only enhance her care or concern for me, I feel.

    Agate, hope there was no lasting damage from your fall, except possibly embarrassment which fades quickly. Not fun falling or getting off balance in front of others. And here other species have no trouble squatting in front of us or whomever to do #2, yet we're embarrassed taking an accidental fall or being seen in a bathing suit. Sometimes we can be our own worst enemy. Hope you're feeling better. I've seen the chart in my pcp's office how to properly get back up after a fall, turn over and get on all 4's, etc. Would sure help to be near something to grab and help pull too. Is something going on with your health that has increased your risk of falls? Was it dizziness you mentioned before?

    So much for flower buds and groundhogs being the early signs of spring, now we must include spray planes in there too. I'm with renee and Sally, let's bring on spring! Any new trips planned, renee?

    Glad Lacy is such a loving companion for you, Jeanie. Nothing nicer than pet snuggles. I so hate when tech people don't show up when they say they're going to or phone to let us know. One of my pet peeves. Glad you got all those purses sorted. For some reason, I didn't inherit the shoe/purse female gene, I only have a few of each and that's enough for me. I heard there's a trend starting by the movie stars against high heels, that will be great if they make flatter shoe styles that look just as cute with dresses, etc. now that I'd be on the floor with agate if I tried walking in high heels ever again. BTW, I love when you bold your posts, MUCH easier to read!

    Heard of the huge earthquake in Indonesia, sure sounds like there's more big earthquakes happening these days. Mother earth is not happy.

    Interesting that Scott Kelly grew 5cm in a year in outer space. Will it last? Wonder if a treatment could be learned for those here suffering from dwarfism?

    How are you doing, Cat? Any decisions made or are you still struggling with it?

    Yes, Vicky, it's not the same without Howie. Hope he finds his way back. Come back soon, Howie.

    Sally, glad your spasms have lessened, hope the med changes help further!

    Hope your presentation went well, Cherie! Glad you got some added coverage for Rebif, so unfortunate when finances dictate our treatment decisions, especially if you feel it's working. Not sure if "understanding" the risks would be much more than cold comfort if the worst of them happened.

    After the discussion on foot cycles, I ordered a motorized foot/arm cycle. Will let everyone know if I think it's helping when I get it, but the reviews looked really good. You can even use it in the reverse direction by turning it around. I'll be ready for swimsuit season yet.

    I'd definitely sell the expensive chocolate if it was given to me. I'd rather have a monthly facial or massage for a year or go on a cruise and eat a snickers bar than the very brief enjoyment and memory of very expensive chocolate.


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