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    Hi again all

    Hi all,
    Haven't been here for a long while- literally needed a break.
    I hope you have all done well. Haven't caught up on the 'regulars' yet.
    Not really sure why i'm back at this time... working stuff out.
    I tend to use typing on here as kind of a way of sorting and collecting my thoughts and seem to be having more trouble doing that so maybe thats why.
    Went to thailand in November . Was fantastic - didn't want to come home. The thai people are so helpful and forgiving of all idiosyncrasies. I not only rode an elephant but i swam with dolphins and snorkelled in the open sea. I grew up 20 minutes from the Great Barrier reef and i had to go to thailand to do this. Felt 'normal' for the 1st time in years.
    My best Christmas present was a ultra sound scan of our 1st grandchild - due July 18.
    We have stocked our farm with cattle and i have named most of them. They are very quiet and some allow me to pat them.
    Our little grand daughter arrived 3 weeks early and is beautiful. 6lbs 1 oz -Isla Mary
    Despite all these uplifting 'life' events i still seem to be struggling with 'life' as such and at times almost feel agoraphobic regarding the outside world so i'm dipping my toe in the outside by sharing on here.
    Thanks for listening,
    Caroline.

    #2
    Listening to your thoughts expressed in your writing is like listening to the ocean lap the shore, soothing and peaceful.

    You express your thoughts beautifully, thank you for sharing them. You are so genuine. Only heart touches heart. The touch of your heart here blesses me, and so many others. Thank You!

    Comment


      #3
      Hi Caroline! Glad to see you here again. You can "dip your toes" here anytime. We are always here for you to help you work out stuff.

      It sounds like you had an adventure of a lifetime in Thailand. Lucky you

      Congrats on the birth of your first grandbaby They are so precious. Do they live nearby so you can enjoy her?

      We've enjoyed the birth of 6 of our 7 grandkids (one is adopted), so I know the thrill. We love watching them grow - there's nothing like it and when I'm with them they help me to forget all my MS woes.
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment


        #4
        Thanks for the replies.
        Hearing from you seasha is kinda like receiving a visit from an old friend.
        Yes my son, daughter in law and new bub live about 200 m away actually so i try and have a short visit each day. Still working out the balance between too little and too much....Don't want to intrude on their private time but also don't want to miss out on things. I had thought that the relationship between my daughter in law and myself had reached a higher level of trust and affection over her pregnancy but can feel a little distance developing now they are home. Am hopeful its just tiredness and will settle. Why oh why do happy events always go hand in hand with extra worry!!!!!!

        i don't remember talking with you ,myoak, before, but i certainly am glad to have made your acquaintance.
        You are so generous. i read your thoughts and they flow like poetry- so eloquent and considerate.
        I have so much trouble formulating cohesive and intelligent conversations any more that i really appreciate the skill in others. Today is the first time in months that i have typed more than a few txts. took me 1/2 hr to work out how to get back into msw and that was before i started typingthank heaven for spell check and auto save

        Caroline

        Comment


          #5
          Welcome back, Caroline! Good to see you return.

          You were a sometimes member at our Exercise Check-In. Feel free to check in there again on Thursday if you wish. I recently returned from vacation, so I've been MIA for a couple of weeks.
          ~ Faith
          MSWorld Volunteer -- Moderator since JUN2012
          (now a Mimibug)

          Symptoms began in JAN02
          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
          .

          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

          Comment


            #6
            Hi Mamabug,
            Thanks for the reply.
            Yep i did occasionally check in with the group and may do again .
            I did look and see how you,Koko and the others were doing briefly yesterday.
            Was nice after all these months to still see old names still here.
            Because i do isolate myself some its nice to have a sense of continuity and familiarity to visit with.
            Caroline.

            Comment


              #7
              Originally posted by Carolinemf View Post
              ... its nice to have a sense of continuity and familiarity to visit with.
              Caroline.
              Yup; we're just one big happy family over there.
              Actually, we do provide each other with a lot of support. Even when I don't meet my exercise goals for the week, I likely exercise more than I would if there was no group. And, in the past, when the group "died" for awhile, because of lack of use, my exercising went down considerably. Since we've resurrected it, our base has been fairly stable. I'm always glad to see everyone check in each week.

              Others are always welcome to join our Exercise Check-In, posted weekly in The Wellness Forum. You set your own goals. You can keep the same goals week-to-week, or modify them. You decide if you accomplished them. Check in once a week to let us know how you did last week, and to set goals for the following week.
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment


                #8
                Myoak

                Hi again,
                Am just adding a post to this thread so as not to hijack a post in sym & treatments.

                Thanks for asking after me Myoak. Am doing ok thanks and have looked into LDN in the past and would like to try it, but from memory.... don't think it was available in Aus at the time. May be now.

                Also thought i"d share something-
                I have been on paroxetine for a while now and it does seem to have improved mood fluctuations etc and will continue.
                But i took my last pill in pack the day before yesterday and then forgot to get more so skipped yesterdays dose.
                It says everywhere "do not stop taking this drug abruptly". I have run out before and it's taken a couple of days for the effects to be noticeable. It seems to effect my sleep and dreams and activity while asleep especially- weird dreams and talking that get worse and become nightmares and yelling (so my husband says).
                I didn't think missing the one dose yesterday would be too bad and intend to get more today.

                Now i am not especially afraid of snakes but last night i dreamt that i had fallen and had a dead one across my chest and my husband had startled another and it was coming straight at my face, so i grabbed the one across my chest to whack the one coming at me away with.... now the pain and astonishment!!!! I woke up having actually tried to do this in my sleep, and had succeeded in throwing myself out of bed doing a 360 and and landing a metre from my bed and up against the wall in the middle of the night! I'm not sure whether to be proud of myself and proclaim my acrobatic accomplishments to the world and bare the bruises like battle scars or be embarrassed?
                I do know one thing though - I ain't missin takin any of dem dare pills agin!!!
                Any hoooo i hope my little nocturnal adventure gives you guys a giggle.
                Caroline.

                Comment


                  #9
                  Caroline,

                  Never a dull moment around there! I’m glad your sense of humor is intact and quite active, too! So… I have some information to share and then a fun quote at the end of it all.

                  Are Aussies familiar with Annie Oakley? She was a famous sharpshooter who grew up in western Ohio not far from where I live. Oddly, she died of vitamin B12 deficiency; and that is one of the things I want to talk about.

                  I believe you have mentioned fatigue, Caroline. Many pwMS are affected by fatigue and B-12 can play a role in it.
                  Studies suggest an association between B12 deficiency and MS; it has been observed for years that vitamin B12 deficiency and MS share certain pathological changes.

                  I’m going to link an article about vitamins and MS that is way too long. Please don’t get bogged down at the beginning of the article. If you can scroll down find section 3.2 about vitamins B9 and B12, that is what I’d highlight today to convey the importance of B12.

                  https://www.sciencedirect.com/scienc...05650218300078

                  Symptoms of Vitamin B12 deficiency can mimic MS; B12 does affect myelin.
                  Importantly, the reference range used to decide if you are “deficient” in B12 varies significantly in different countries. For example, in the USA and Australia the bottom of the range is 180 pmol but in Japan it is 300 pmol.

                  http://www.vitaminb12deficiency.net.au/

                  Since B12 is non-toxic and we just piddle it out if over-doing it, it is probably best to make certain we are getting enough.

                  Another thing to know is that B vitamins may interfere with melatonin production so you want to take B vitamins, including B12, early in the day.

                  Also, I recall one study suggested that IFN-B-1A (Rebif, Avonex) reduces B12 levels. So something to monitor for anyone on those DMTs.

                  B12 is such an important vitamin. Some pwMS have reported a reduction in fatigue after taking an increased amount of B12.

                  On to paroxetine, which as you know is a SSRI (Selective serotonin reuptake inhibitor). It is possible that paroxetine may be beneficial in MS for more than what it current works well for... which is improving mental health. A related SSRI, Fluoxetine is being trialed http://www.ms-smart.org/ . We will have to wait and see if there are additional benefits demonstrated in that trial but it is possible and obviously some people believe SSRI’s may be benefit MS or they wouldn’t have funded the trial.

                  You ended your post with humor, Caroline, so let me post a fun quote from our sharpshooter, Annie Oakley...

                  “I am not afraid to love a man. I’m not afraid to shoot him, either!”

                  Be well!

                  Comment


                    #10
                    Originally posted by Myoak View Post
                    Caroline,

                    Never a dull moment around there! I’m glad your sense of humor is intact and quite active, too! So… I have some information to share and then a fun quote at the end of it all.

                    Are Aussies familiar with Annie Oakley? She was a famous sharpshooter who grew up in western Ohio not far from where I live. Oddly, she died of vitamin B12 deficiency; and that is one of the things I want to talk about.

                    I believe you have mentioned fatigue, Caroline. Many pwMS are affected by fatigue and B-12 can play a role in it.
                    Studies suggest an association between B12 deficiency and MS; it has been observed for years that vitamin B12 deficiency and MS share certain pathological changes.

                    I’m going to link an article about vitamins and MS that is way too long. Please don’t get bogged down at the beginning of the article. If you can scroll down find section 3.2 about vitamins B9 and B12, that is what I’d highlight today to convey the importance of B12.

                    https://www.sciencedirect.com/scienc...05650218300078

                    Symptoms of Vitamin B12 deficiency can mimic MS; B12 does affect myelin.
                    Importantly, the reference range used to decide if you are “deficient” in B12 varies significantly in different countries. For example, in the USA and Australia the bottom of the range is 180 pmol but in Japan it is 300 pmol.

                    http://www.vitaminb12deficiency.net.au/

                    Since B12 is non-toxic and we just piddle it out if over-doing it, it is probably best to make certain we are getting enough.

                    Another thing to know is that B vitamins may interfere with melatonin production so you want to take B vitamins, including B12, early in the day.

                    Also, I recall one study suggested that IFN-B-1A (Rebif, Avonex) reduces B12 levels. So something to monitor for anyone on those DMTs.

                    B12 is such an important vitamin. Some pwMS have reported a reduction in fatigue after taking an increased amount of B12.

                    On to paroxetine, which as you know is a SSRI (Selective serotonin reuptake inhibitor). It is possible that paroxetine may be beneficial in MS for more than what it current works well for... which is improving mental health. A related SSRI, Fluoxetine is being trialed http://www.ms-smart.org/ . We will have to wait and see if there are additional benefits demonstrated in that trial but it is possible and obviously some people believe SSRI’s may be benefit MS or they wouldn’t have funded the trial.

                    You ended your post with humor, Caroline, so let me post a fun quote from our sharpshooter, Annie Oakley...

                    “I am not afraid to love a man. I’m not afraid to shoot him, either!”

                    Be well!
                    Hi, that was very interesting about Anne Oakley. I had never heard that she died of B12 deficiency. Besides us MSers taking B12, most of also take Vitamin D3

                    Comment


                      #11
                      Hi myoak,
                      Wouldn't say aussies in general would know annie but i definitely do .
                      Grew up a big fan of westerns and any trivia/ general knowledge .
                      her learning how to shoot in order to feed her siblings and herself is a testiment to what we can sometimes accomplish if we have the right motivation.
                      Have looked into b12 and usually do take it as well as a variety of suplements . Though i have not been as diligent about it lately.
                      I will check out the ssdi info later- should be interesting- we are headed to our farm for the weekend- and will get back to you.
                      Thanks.

                      Comment


                        #12
                        Hi,
                        Had a nice weekend away.
                        Ty infusion then farm.
                        Didn't do much because my rump is black and purple from hitting the wall and of course rather sore.

                        Read a couple studies already completed regarding ssdi's (mostly fluoxetine) and their effect in spms progression. Interesting but inconclusive so far. need more participants to complete and needs to be stretched over a longer time. maybe the new study you found Myoak may address these issues.
                        Majority of participants taking fluoxetine reported increased fatigue (especially at outset) The mind boggles when we consider that this is the symptom that this med is usually prescribed for.
                        Would love to discover a magic remedy for fatigue- slept 15 hrs yesterday and still could doze off.
                        Has anyone else ever done weird things while on or quitting these meds or is it just me?
                        Caroline.

                        Comment


                          #13
                          Hello Carol,

                          There seem to be many MSers taking B12 for fatigue and I believe it helps. It isn't a complete answer but if we can do a lot of small things which are beneficial then maybe we can achieve something significant in fighting fatigue. As you said, Vitamin D is awfully important, too. I can't imagine anyone with MS not knowing what their Vit D level is. I see you are on Tysabri. How is that going? May I ask how often you get infusions? Are you JCV+?

                          Best!


                          Hi Caroline,

                          Yep, pretty odd that a med to help with fatigue often makes you more fatigued when starting. Welcome to the world of MS meds! We all hope better things come along soon and of course, there are numerous studies always taking place so we do expect better treatments for fatigue to become available.

                          I wanted to ask the same question of you, Caroline... how often do you get infusions of Tysabri? I'm a little embarrassed to ask the next question because I should have remembered but I'm too lazy to go back and look through your posts... are you JCV+?

                          As you know, I am really beginning to question the wisdom of my spouse switching from Tysabri to Ocrevus as expressed in other threads.

                          Be well! May joy fill your life today!

                          Comment


                            #14
                            Hi Myoak,
                            Ty monthly, been taking for 6 1/2 years. jc+ from outset
                            Just had my 6 month blood test. Will be interested to see titre level, it has been dropping the last 2 tests...?
                            I was all keen to go bigger n better last year when i heard about Ocrevus but am cautious now due to my concerns about cancer. Available in aus in Feb 18. The time it remains active is also a worry.

                            I didn't expect to make it past 45 (family history) but even though i know i'm progressing steadily i think i'm ok with it to a certain extent.
                            The main thing that bothers me is feeling like a dill when my memory/cognition lets me down.

                            How does your wife feel about the change? Is she still in a positive mindset?
                            You did say her balance has improved but other things have deteriorated does this bother her?
                            Caroline

                            Comment


                              #15
                              Caroline,

                              Of course, lower is better but JCV titer levels fluctuate so I wouldn’t be overly concerned about that. Usually, my spouse's titer was above 3.4 and sometimes got up to over 4, which is pretty high. But later came down to in the 2’s before going back up. So quite a variance. It was not a huge concern. I was doing something to lower the titer level and shared that with doctors, however, since it was experimental I can't with clear conscience put it here; not right now.

                              The larger issue was extending time between doses, which as I’m sure you are aware greatly diminishes the risk of PML. That is why I asked how often you get infusions, if you don’t mind me asking. I wondered if neuros in Australia were practicing dose extension. I certainly hope so. There is no other proven way to decrease the risk of PML in JCV+ on Tysabri.

                              I do know one person who extended time to 8 weeks but got a new lesion for the first time in years so she gets Tysabri every 7 weeks now. The era of personalized medicine.

                              You mentioned progression. That is concerning. Often Tysabri is good at slowing or halting progression. And, likely it is slowing progression from what it would have been on a less effective medicine.

                              Living in Australia, I suggest you google “sheep and multiple sclerosis” and reading about Clostridium perfringens as a bacterium that can cause foodborne illness or food poisoning and perhaps multiple sclerosis. Reluctantly, I am going to link an article about the 3 oral MS drugs and that bacteria.

                              https://www.frontiersin.org/articles...017.00011/full

                              I say reluctantly because I am not a fan of any of the orals and I’d rather not present as though I encourage their use because I don’t. I just wanted you to take a look at the article for education if you like.

                              Personally I would seriously consider requesting to be tested for clostridium perfringens if I had MS and lived in Australia. Wouldn’t it be great to treat that if it was a problem? Especially, if it could be contributing to progression?

                              I agree wholeheartedly on waiting on Ocrevus a couple years to see what cancer risk develops (and whatever else), if any.

                              So far, no major problems have developed on my spouse’s switch from Tysabri to Ocrevus… and her balance is better most days… but… there is more fatigue, she gets many more stabbing pains in her eyes, and a great deal more tingling and numbness in her arms. So the jury is still out on whether it was the right move; it has only been just over 1 year. Switching back would be murderously difficult and most neuros just would not do it, I afraid, for anyone JCV+. Just another good reason why a switch must be done with a lot of thought.

                              And, you are correct, Ocrevus stays in your body a long, long time even after stopping. And that raises a bunch of issues talked about in other threads.

                              Best to you!

                              Rolly

                              Comment

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