tag:blogger.com,1999:blog-2399329897798113338.post4313249713882653501..comments2023-12-05T18:51:57.333+00:00Comments on Tales of Life with Multiple Sclerosis: "Open & Honest"Ameliahttp://www.blogger.com/profile/15005720150574964538noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-2399329897798113338.post-43186148798679965692009-12-15T23:08:37.820+00:002009-12-15T23:08:37.820+00:00Hi Amelia,
Please come by and pick up your blog aw...Hi Amelia,<br />Please come by and pick up your blog award.<br />Love,<br />HerradHerradhttps://www.blogger.com/profile/13728207969811635579noreply@blogger.comtag:blogger.com,1999:blog-2399329897798113338.post-81001024237328231572009-12-11T04:32:29.968+00:002009-12-11T04:32:29.968+00:00Hi! Amelia I know it can feel funny to talk about ...Hi! Amelia I know it can feel funny to talk about certain things. I use to be like that only now I think it's better to talk about it. I did learn a good tip from Anne at Disabled Not Dead. She suggests and I do it: While sitting on the toilet lift your self up off the seat on one side and continue trying to empty your bladder then do it on the other side. It really does help empty you out and you will be able to last longer between trips to the bathroom. <br /><br />Take Care of Yourself<br />Bye<br />CaroleTaxingwomanhttps://www.blogger.com/profile/05564125285937262315noreply@blogger.comtag:blogger.com,1999:blog-2399329897798113338.post-67182923782137187852009-12-09T23:28:01.533+00:002009-12-09T23:28:01.533+00:00Oops, I am using a program that types for me as a ...Oops, I am using a program that types for me as a dictate. I noticed that it typed "..., a man died..." when it should have read "I wear them at night for protection". (Heehee)<br /><br />Sorry about that. LaurenLaurenhttp://lauren-livingwithms-aolcomlglbgl2003.blogspot.com/noreply@blogger.comtag:blogger.com,1999:blog-2399329897798113338.post-55436118786755800492009-12-09T22:46:11.261+00:002009-12-09T22:46:11.261+00:00Hi Amelia,
I have had 41 Tysabri infusion so far....Hi Amelia,<br /><br />I have had 41 Tysabri infusion so far. Have you considered the occasional "nerve ending sensations" as being your nerves trying to heal themselves (a.k.a. remyelination)? <br /><br />Also, with regard to your "urgency" problems, I am not a doctor but it appears to me that your bladder is spasming, which is why you feel the need to urinate almost immediately. You might think about purchasing some adult "Depends" to give you a more relaxed & safe feeling from having any accidents (I wear the man died for protection).<br /><br />I have not read your entire blog, but if the "nerve endings sensations" continue to give you problems & pain, you might want to consider discussing this with your neurologist and perhaps he/she might want to prescribe Neurontin/gabapentin or Notriptilyne to aid in dulling those sensations. I take Notriptilyne for that reason.<br /><br />In any event, I hope you start to feel better soon, and the pictures/photos of your babies (kitty cats) are just precious!<br /><br />Take care dearheart, Lauren :)Laurenhttp://lauren-livingwithms-aolcomlglbgl2003.blogspot.com/noreply@blogger.comtag:blogger.com,1999:blog-2399329897798113338.post-44432419516716359862009-12-09T06:53:41.557+00:002009-12-09T06:53:41.557+00:00Well, it is important to see your Specialist whene...Well, it is important to see your Specialist whenever you have new symptoms, especially if you are on a treatment. What if the Tysabri isn't working and you need to modify treatment? If you are having a relapse, you need to catch it quick to prevent permanent damage! You don't want these things to be forever if you can avoid it! Over here in the U.S., our urologist have a little doppler that they use to see if your bladder is empty ,right after you urinate. It is handy... also, sometimes if you continually, hold it, when you gotta go, you have fantom sensation after you empty. Might be nothing but you should always get it checked! The important thing is to get things before they get worse or permanent! I personally, let things go for 8 months thinking it was progression, when it was the Copaxone! Off that now and the severity of the symptoms has backed off slightly.... I am still very sick, but we have now started Solu-medrol infusions, and I am going on LDN this week, then we are going to try to get insurance to pay for I.V.I.G. After all that we will see if I am strong enough to go back on one of the DMD. I will be praying that you get to feeling better, and I hope you get everything worked out! please take care and i will be thinking of you! xox<br />Audra Lynnsimplemomhttps://www.blogger.com/profile/13860982597439826791noreply@blogger.comtag:blogger.com,1999:blog-2399329897798113338.post-12041377752131077742009-12-08T02:02:32.563+00:002009-12-08T02:02:32.563+00:00Amelia,
It is so hard to say if it is a relapse or...Amelia,<br />It is so hard to say if it is a relapse or just the progression of the MS. The way I am reading it, it sounds like this pain is not a new sensation. It just has become more severe? With you just starting the Tysabri it is so hard to say. Can it be a reaction to that or is it a relapse. What does your Neurologist say? As for the bladder issue, you are not alone. I have dealt with that for a few years now. Sometimes worse then others. I know it seems embaressing, but it is part of this disease. Mine comes in waves. So when I first start having that issue I use a pad and if it progresses then sometimes I have to use a depends. It is very embaressing and aggrevating. It doesn't seem fair that we should have to deal with these kinds of issues but we do. In my opinion I would call my Neuro and let him/her know what is going on and see what he/she says. I also would look into what are "normal" reactions to the Tysabri and see if the pains you are feeling are being intensified by that. I hope not due to the fact that I may have to be put on Tysabri soon too. I feel so bad for you and my heart goes out to you. I know that when you are in pain day in and day out you get so depressed, aggrevated, tired, and whatever other emotions that you just get worn out and it plays on your emotions. I feel your pain. I just went through that and I hope the Doctor can give you some advice or help. Please keep us informed and know that I am always here for you.<br />XOXOXO<br />TaraLiving Day to Day with Multiple Sclerosishttps://www.blogger.com/profile/16919357938675061411noreply@blogger.comtag:blogger.com,1999:blog-2399329897798113338.post-9570196795095869392009-12-07T23:52:09.360+00:002009-12-07T23:52:09.360+00:00Dear Amelia,
Even you don't fell like it, you...Dear Amelia,<br /><br />Even you don't fell like it, you must call your MS nurse. Even if they can't help right away (most of the time they can and they'll do gladly.),they need to know what's going on in your body. You're not a nuisance to them, you a person they are taking care of. If it's a new symptom or something that seems to get worst for most than 48 hours they need to know.And for the bladder problems there's some meds for that. My sister is taking some and I might have to do so myself pretty soon. I thought I was the only one who was convinced that it was an infection and the test came back clean! After 3 different times, the doctor at the clinic told me "don't you think it could be related to your disease?". D'oh!Úll Bruínnhttps://www.blogger.com/profile/14285232724643661434noreply@blogger.com