PML odds have gone crazy

I got a call Thursday from my infusionist for Tysabri, she said my Jc number has gone super high all of a sudden. Before my odds of pml were staying about one in a thousand, but now it is one in 117! So, I will be going off tysabri after 72 doses. I had been feeling like it was time, but that made the decision easy. Also, my lymphocytes are really, really high so I have to go to a cancer specialist to see what is going on. Has this happened to anyone out there, the lymphocyte thing? I have to admit that I am pretty worried. Please let me know what you think. Thanks. Kelly

Skip

Promoted Content

Get email updates from MSAA

MS news, local educational events, vital programs & services

Subscribe now

Promoted by My MSAA Community

90 Replies

oldest β€’ newest
  • Kelly, praying everything is okay.

  • TUTU, thanks so much. I absolutely love your bathroom! It must be incredible. Enjoy. Kelly

  • Hi TUTU! Haven't talked to you for a coupe days, how is everything? Are you feeling okay? How is your family? I sure hope you are good. Not much new here. I spent the day in bed, just couldn't walk. Stupid disease! I used to run and was so active, but I have learned a lot having ms. So it is not all bad. Hope to hear from you. Take care. Kelly

  • Hi, Kelly, for some reason my phone isn't updating new posts as it has in the past. So I apologize for not seeing this until now. Had I not scrolled down through posts, I wouldn't have known you had written!

    I am so sorry to hear you've had a bad day. With all you have going on with your upcoming doctor appt and the stress and concern involved with that, the last thing you need is a bad MS day. I pray the walking issue is temporary and your legs will work better tomorrow.

    I am ok. Thanks. Have had a persistent UTI and got a call today following yet another urine culture. I'm hoping this switch in antibiotics does the trick and puts this 8 week UTI to rest! Just not feeling great. But things could be a whole lot worse...like planning a visit to a cancer specialist. I have you on my prayer calendar.

    I hope you get a good night's rest and that tomorrow is a much better day for you. Praying this setback is a temporary one.

  • I'm glad they caught the PML thing in time. Just be careful on whatever drug therapy they put you on because some of the oral pills have a warning that it also can cause PML.

    I pray that the lymphocytes situation isn't anything bad and I pray that you'll be just fine.

  • Royjr, thank you for your prayers and your kind words. I am really grateful that they caught the high PML number in time. Thanks again, I love this site. Kelly

  • Hi Kelly, your post has caused me to research pal and the JC virus. I did not know it was such a serious complaint. I apologise for my ignorance, and I want you to know that I am praying for you . Please let us all know how you get on especially with the cancer specialist. This forum is certainly an education. God bless Jimeka

  • Jimeka, thank you for your prayers. I have an appointment Wednesday with my neuro to discuss my options, but I have pretty much decided to go back on Copaxone. The orals I researched had pml risks too. I did fine on copaxone years ago. I am so grateful for this site! Kelly

  • My 1st Neuro was going to put me on Tysabri, even though I am JCV positive. Second neuro says we'll find something safer.

  • I understand your concern, but my neurologist has told me that simply being JCV positive is not an automatic exclusion for Tysabri. My understanding is that PML doesn't surface suddenly, but that there's at least a six-month window when he can see (by lab testing) if a person's risk has changed dramatically. Also, being JCV positive alone does not mean you will develop PML. You also have to have had an immuno-therapy, such as Mitoxandrone/Novantrone. I'm JCV negative but have had Novantrone. I'm about to go back on Tysabri.

  • Lisa, Kelly here. I am Jc positive and had 72 doses of tysabri. They monitored me closely and all was fine until my last dose. I had six months of Novantrone as my first treatment. In October after my last tysabri dose my chances of PML went to 1:115. It had been 1:1000.

    So it was no more tysabri for me

    ! I had been thinking of getting off it anyway, so it was not difficult. I am back on Copaxone. Hope that info helps someone. Kelly

  • How do they calculate the odds? It must be that something regarding the titer of the JCV for you has changed. Interestingly, my neurologist told me that it's pretty unusual for an adult to acquire the virus. Nevertheless I will have the titer done every 6 months, so it must be possible even if unlikely. OR-they don't really know and we are hedging our bets! Cynical or realistic...

  • Lisa, there were a large percent of the people at my neuro who were Jc positive on tysabri. The infusionist drew blood every quarter, looked at the Jc number and used some calculation to determine our risk. I think it's not cynical at all. You want your eyes wide open with this stuff. So, have you been on tysabri before did you say? What have you been on lately? Do you have a lot of symptoms? I look forward to hearing from you. Kelly

  • Hi Jimeka! How are things in the U.K. Today? Anything exciting? How are you feeling? I'm just having one of those blue ms days where I have a million things to do, but just don't feel good enough to do them. But they will all be there tomorrow. My hubby and I are watching election news, can't wait for it to be over. I hope you are having a great day! Take care. Kelly

  • Hi Kelly, it's midnight here in the uk. It's rained all day, quite heavy at times, only reached 5* but in the wind a lot cooler. I've been a bit like you today, emotional, a few tears, took myself to bed, so I've been working on my latch hook Christmas cushion. I had a lot of wool left over and I found a template from last year, so I am making a Father Christmas one for my new great niece. The grandchildren have been at a party so it's been quiet, and they are sleeping out at their other grandmas tonight. Both of their parents are on 12 hour shifts tomorrow so again it is quiet tonight. The builders have actually started work on my daughters bungalow, but I am expecting them to still be living with us until next summer. Like you the election is tiring and alittle boring. Over here every time you turn on the news it's either Clinton or Trump they are talking about, so I do not watch it. I am not a political person at the best of times, I am a bit ignorant of politics, when we have an election, I always ask my hubby who will be best to vote for for us farmers. Anyway, anything making you blue, or is it JUST the ms, it has a lot to answer for. Hope you have a better day, and remember, smile and the world smiles with you, cry and you cry alone, it's true, with ms you find out the hard way. Before I go I will tell you something funny, my daughter has had a mouse in her car, made abit of a mess but now she might clean it out a bit more often!!!

  • I'm sorry you've had a down day, Jimeka. It seems to be going around...

    But working on your gift for your new great niece must have been uplifting. I love Christmas. It always brings me hope.

    I didn't realize your daughter and family live with you. Is she the mother of your grandsons-do they live with you too?

    A bit emotional here too. I should have taken myself to bed. Ask my husband. Poor guy. We were headed to church yesterday and it started pouring half way there. "I forgot my raincoat," I said. "But what's a little water, right?" Then I burst out: "Help, I'm melting! I'm melting!" My husband laughed and, thankfully, the past few days spent with the Wicked Witch of the West were forgotten. πŸ˜‰

  • I don't know Tutu, what will you do next. Yes my daughter, hubby and 2 sons are living with us, also my eldest son is living with us. He moved out at 18 , fell in love with a lovely girl, got a house together, but all went sour. He is now 31 but finds he likes it at home. He has just landed a job with Siemans making wind turbines, and seems quite happy at the moment. There are 7 of us at the moment trying to live together, it's fun at times but also it can be quite stressful. My daughter caught another mouse this morning, so 2 dead how many more to go. I've cleaned my car out today just in case!! You take care and no more melting!

  • You have a houseful! Noisy and fun, but also exhausting. Our youngest son and his 3 boys moved in with us two years ago after his wife walked out on him and their boys (1, 3 and 7 at the time). Heartbreaking!Anyway, he needed help with the boys. He was on 12 hour shifts and after moving in with us, commuting 1-1/2 hrs each way. I got those boys up in the morning and had them fed, bathed and ready for bed when he got home. I about fell apart. Cried a number of times because I just couldn't keep up and do it all. He found help and they moved out after 3 months. I love my kids and grandkids (our son, his new bride and the boys will be over Saturday), but I find I can't function much after a day with them all. Sad, huh? Oh well, we do what we can. They know they are loved. I hope you are sleeping instead of counting mice! 🐭 You must be feeding them something yummy.

  • It should say pml not pal, predictive text !!

  • Jimeka, oh, you totally made me laugh with the mouse story! Like you said perhaps she will keep her car cleaner. What part of U.K. Do you live in? I have always wanted to see Cornwall, it sounds lovely. And to think that you are farmers, how wonderful! That is truly a dream of mine, although I am not sure how helpful I would be. You mentioned once that you have ppms, do you suffer a lot? That is a tough one, isn't it? Please know that you are in my prayers, and I truly mean that. I told my husband that my nightly prayer takes a lot longer now because now I include all the people I have met here. It really feels like one big family. I hope you are having a better day. I have been in bed all day, just can't walk, but I am determined tomorrow will be better. Talk to you soon. Kelly

  • Oh Kelly, I am so sorry that you can't walk. That's what I am really scared of happening to me. It gets worse everyday, the walking that is, and tripping up. I can barely write with my right hand now and so this year it's bye bye to Christmas cards, I am going to have to do e cards. My daughter caught another mouse, how many more have moved in I don't know. I have been doing my vat all day, it used to take me 4 hours now it takes twice as long. As to where I live, I live on the east side between Yorkshire and North Lincolnshire, my Dad was a farmer and I married one. Anyway I hope you are having a better day today, I am going to bed shortly, so I will pray for you. God bless Jimeka

  • Jimeka, I know how you feel about the walking thing, it's such a big fear. Mine comes and goes. Today even though I am in terrible pain I can walk. I really smile a lot and always count my blessings. I find that helps so much. But I am so sad for you that your right hand doesn't want to cooperate. Do you ever think back to pre-ms days and wonder about how we just did things without even thinking about them? I hope your ms does not progress quickly or not at all. Truly I do. I feel like I know you even though we just started writing and live an ocean apart. A common illness binds us all. Take care. Kelly

  • Ditto x

  • I've been through Nottingham and the Cotswolds. LOVE the Cotswolds. Also scones and clotted cream-especially the clotted cream! YUM! It's been about 16 years or so. But you live in a beautiful country!

  • Thank you Tutu. You too live in a very beautiful country. I saw alittle of when I lived in Canada. Niagra falls, Lake placid, Detroit, as it was just across the border from where I lived in Sarnia. We did Atlanta, Miami, NASA, and a few more places. Since having the children we have all been to Disney Florida, where we spent 3 weeks touring Florida, Daytona beach etc, it was one of the best holidays we had as a family. Anyhow if you are ever decide to visit the uk again, feel free to come and see us, the door is always open x

  • Thank you! I would love to visit England again and would definitely want to see you while there...the same here if you find yourself in Washington!!

  • Thank you 🌈

  • JImeka,I LOVE your shirt! Where did you ever find it? It really does say it all. Hope you are feeling good today or I should say this evening your time. Kelly

  • I found it on amazon uk. Jes has found one on Amazon smile and so has Tutu. I have just posted about my experience today, hope you are feeling abit better yourself, Jimeka

  • So sorry to hear this, will pray for those #'s to drop and there is no sign of the pml. Lynn

  • We are praying. Please keep us posted.

  • Lymphocytosis as effect of Tysarbi?

  • Erash, I am not sure if my high lymphocyte number qualifies as lymphocytosis, feel kind of stupid that I don't know! I will know more after I see the cancer doctor. But the high numbers seem to be directly related to tysabri, unless heaven forbid I have cancer of some sort. I guess all I can do is wait til I get into th doctor. Kelly

  • πŸ™ƒsorry high lymphocytes is lymphocytosis (some do set specific # criteria but in general, same meaning)

  • Erash, I saw your post about insomnia and had to reply. I have it so bad too. I can be totally exhausted and just lie in bed for hours trying to fall asleep. Sometimes I will try to read, but when I'm that tired I get double vision. I am so very sorry that you are going through this. I will be praying that you get some good sleep. Kelly

  • Thank you Kelly. We need to form a night owl club 😜

  • Count me in ugh lol

  • Erash, is it common for ms-era to have insomnia? And yes we do need a night owl club! Kelly

  • I've read that insomnia is a common symptom for ms

  • Erash, I'm pretty sure you and Jes are both on Copaxone. So I'm going to write t

    O both of you. Today was my second shot and it hurt like $@&!. I think you get the picture. Is there something I can do to make it better? How are you? Any big plans for the holiday? Thanks for the help. Hugs, Kelly

  • Kelly, I took copaxone for @ 18 mos shortly after being diagnosed. I stopped because I didn't feel like myself and my MRIs were stable. My neuro agreed.

    Given what we know now about progression, I wonder if I should have stayed on it.

    Yes, shots hurt. You are icing and taking ibuprofen?

    The side effects of the oral DMDs concern me. But always have to weigh risks and benefits

    Hang in there!

  • Keeping you in my prayers.

  • Kelly, so sorry you are going through such scary issues. You are in my prayers. Please keep us posted.

  • sorry to hear your odds have gone up. Hope you are one of the losers and PML just passes u by without a second look. Chin up and my best wishes for you and yours, Royce RRMS 14 yrs (I think)

  • Your in my prayers!

  • Hi timandlisa66! Thank you for your prayers, I know that prayers work. So do you both have ms or just one of you? I'm always interested in people's experiences with their diagnosis, treatment modality, etc. I hope we can stay in touch and get to know each other. Take care. Kelly

  • Hi Kelly, I am the one with MS but my husband has to deal with crazy me so I include him in everything, :) Hope to talk again soon! Lisa

  • Hi Lisa! I meant to write sooner, but it's been crazy with doctor appointments, grandkids birthdays and life! How long have you been diagnosed? Are you happy with your meds? Sorry, not being nosy, just want to get to know you. I live in Salt Lake City with my wonderful husband. I have 8 kids, he has 3, and we have 14 grandkiddies. We are only 55 and expect we'll have MANY more grandchildren! We will see I guess. I hope you are feeling good. Please stay in touch. Kelly

  • My Neurologist sent me for a Blood test to see if I'm prone to PML before she would let me start Tysarbri ......and I am prone to PML. No Tysabri for me .

  • Elle61, hi how are you doing tonight? I hope you are feeling good. I think you are very lucky that you did not go on Tysabri. I was Jc positive, but they put me on it anyway. In hindsight I should have put my foot down and said no. Oh well. I think I will be going back to Copaxone. Let me know what you end up taking, I'm very interested. Do you have a supportive family? A good support system, like this site really helps don't you think? Take care. Kelly

  • Hi Kelly, I took inject-able for 15 yrs. or more + could walk on my own then, now I use a rollator all the time . I stopped injecting in 2010...was feeling depressed that the drug s weren't working for me. I take Ampyra now for foot drop + it is working ok. My adult aged kids are supportive but they have there own lives too. I am on my own for the most part ,Im presently looking for a new place to live.....not looking forward to living alone. Take care

    oh yeah , I've been dealing with this for 37 years

  • Elle61, so sorry that you are dealing with this living alone. Boy, you are truly a veteran with37 years behind you. You could teach me so much. I take Ampyra too and have been happy with it. I am looking forward to getting to know you, you sound amazing. I am just a message away! Keeping you in my prayers. Kelly

  • Hi Kelly, I have been off the internet for a few days, I was getting to depressed overall the political BS.

    I feel MS is teaching us , our limitation mainly, but also about what drugs are good or bad for you. Everybody is different and has different symptoms and side affects. I am trying to take the least amount of drugs as I can right now to keep me moving. I don't trust Drug Companies, I feel there in it for the money only.

    As I said I took Avonex,Rebif, + Copaxsone. All very expensive and not one kept me from getting worst. My Doc wanted me to try Aubagio... I backed out of taking it. I'm watching and listening here to see how it is working for people on this site first.

  • Elle, I don't blame you for wanting some feedback before making that choice. It's hard to know the right thing to do sometimes. I am going back on Copaxone after my PML scare. I'm so sorry that none of the meds you tried worked for you. As for the election, you don't want to get me started! What a nightmare. Maybe I'll do a general post asking about Aubagio and we can find out together about it. I am curious too. Take care and stay in touch. Kelly

  • Hi Kelly, I am prone to bladder infections , I self -cath, and they say it's not a good idea if you get infections...I will discuss this with my Doc now that I know.Elle

  • Elle, oh, that's terriblethat you are prone to bladder infections. Especially when you have to self cath. They told me about six years ago I had to, but I fought it and it worked out. What do you think your doc will say? Please let me know. Keeping you in my prayers. Kelly x

  • I saw my Doc yesterday + she understands why I am hesitant to take Aubagio + said they are coming out soon with yet another new drug I may be interested in, she didn't say the name. I don't mind self*-cath, so much better than what I was dealing with before. Elle

  • are gsElle, I'm glad your doctor is so understanding. By the way I'm having troubletyping tonightso please excuse any errors! It soundslike your doctor is very up to date, that is great. I wonder what the new medicine is she was talking about. It's always hopeful when something new comes out. How are you feeling? Do you have a lot of pain? Pain, fatigue, tremors and balance are my main issues, along with the myriadof other crappy things we get. You mentioned that you were lookingfor a new place to live, any luck? Let me know how things are going. Keeping you in my prayers. Love, Kelly

  • Elle, did you see the question someone postedabout Aubagio and all the replies? When I saw it I thought of you right away. If you missedit, it was postedThursday and is titled Aubagio. How are you doing? Write and let me know. Hugs, Kelly

  • Hi Kelly, I did not see it yet, I'm on my way out and will check it out later...Thanks for thinking of me...Have a nice Thanksgiving ! Elle

  • Elle, have a Happy Thanksgiving! Love, Kelly

  • Kelly I am so sorry you are having to go through this extra stress! As though MS by itself isn't enough! Are you seeing a doctor up at Huntsman? Who is your neuro? I am keeping you in my prayers. Keep us posted.

    Jacqui

  • Jacque, how are you? I am going to see someone at Utah Cancer Specialists on 33rd and 700 east. My neuro is Western Neurological. I am really hopeful that everything will turn out just fine,but it is kind of weighing on me. Thank you for your prayers, it means so much to me. I hope you are feeling okay. Take care. Kelly

  • Jacqui, sorry about your name being misspelled in the last post,my silly computer tries to always change it and I missed it! Kelly

  • Kelly - No problem about the name. Computers don't get it right, ever! I finally had to add it to my computers dictionary so it would quite telling meit was spelled wrong. Though some programs still give me an isue. I am doing pretty well. I think I am finally back to my pre flu self (Wish I could go back to my pre MS self!). I used to go to Western Neurological. I thought Michelle the NP was great but I really didn't like the old guy. He told me he doesn't like to give a deinitive DX of MS until he has treated a patient for at least 10 years. So I switched and started going to Rocky Mountain MS and didn't like how they just wanted to push tecfidera and tysabri and not really do anything. So when my insurnace changed I moved out to the U. I really like Dr. Clardy. She is nice and no nonsense both. I also really like her NP Julia. So I will be staying there. She has been the only one who has taken the time to explain to me why she wants me to do a certain action or take a given med. She also always gives me choices. She tells me the good, the bad, and the ugly on each and then asks me which if any I want to try. She also let's me know what she recommends BUT the final decision is mine because as she says, it's my life and I have to do what I am comfortable with and what works for me and my family. I also like that she is open to alternative treatments. When do you see the cancer doc?

  • Jacqui, so sorry you had the flu. It must be going around, my husband had it bad last week. He even missed work two days and he never calls in sick. Hope you are better now. The old guy at western finally sold the practice and retired, thank goodness. I'm glad you found a home at the U. I talked to the new patient advocate at the cancer doc on Friday, but she said a doctor has to review all new referrals and no doctors were in Friday. So one of the doctors will review it Monday morning and then she will call me hopefully in the afternoon to schedule me. I'll let you know. Again, thank you for your prayers, I know my prayer at night takes longer now as I have added all the people I have met here! Take care. Kelly

  • Amore55 Please let us know how things go on Monday. Will keep you in my prayers. Try and get some rest.

  • Bygonelines love how you said " go back to pre ms self) me to. Hope your doing good we don't hear much from you. :(

    Love that you have that kind of Dr. Mine is kind of like that also. Gave me a choice of 3 shots or 7 shots a wk. I. Said 3 lol

    What kind of alternative treatments? Would love to know more about that.

    Sounds like you and Amore55 are right next door to eachother, that's awsome. :)

  • I tend to lurk on these boards. Though I am trying to be more active and reach out more. The alternative treatments I am using right now are Essential Oils and then I am looking into others. I am finding the oils to be very helpful for my symptoms. I have tried several brands and some just aren't worth the money I spent on them. I have another new one I am waiting for the order to come in. They are supposed to be even better than the ones I like best so far. We will see.

  • Hi Bygonelines l just got my oldest some essential oils and a small defuser for Christmas, the oils are for relaxation. How do you use the oils? And what kind?

    And you you need to come out of the shadows more. We would love your input :)

  • Praying for you and so glad they caught the higher PML number so you could stop the meds...whew!!! I swear that PML scares the crap out of me! Any idea what drug you may consider now? I was DX in December of 2015. They talked about 3 different drugs I could ultimately choose, but since I am JC positive I was so freaked out! I know the risk is extremely low but holy cow it scared me. So I am on copaxone which has next to no side effects! Have been on it for 9 months and it's been great. Some site injection reactions but that's all!

    Best of luck with everything. Will be praying for positive answers and solutions for you. Hang in there!

    Amy

  • Hi Amy! Thank you for your kind words. Yeah, it's pretty freaking crazy. They knew I was Jc positive, but convinced me it would be fine. I'm going back on Copaxone as long as my neuro plays it. If she doesn't, I will probably go somewhere else. But I think she will be fine with it, I was on it years ago and did fine. I had some injection site lumps, but they would fade. Better than PML! How are your symptoms? Are you doing okay? Do you have balance issues? I look forward to getting to know you. Kelly

  • Hi KELLY!

    I even went to the Cleveland Clinic and they, like my neuro, also recommended a drug with the low risk of PML. Even though i was JC positive they said the odds were so low to develop PML. I struggled with choosing my DMT. Realized that I didn't want the worry and anxiety in my mind of "what if I get PML". Have been VERY happy with copaxone πŸ˜€

    I do get itching, bumps and redness form the copaxone shots , but I will take that any day if the meds work and I have no other side effects!

    My symptoms seem pretty good I guess. No balance issues. Mainly weird pains, heat sensations and tightness in my legs. All of my issues have always been in my legs. Such a stupid disease 😜

    It doesn't keep me down, I have always been a busy body and I may have become slower but never stop! Good luck with everything and keep us posted on your next visit:)

  • Amy, do you live in Ohio? I grew up in Cuyahoga Falls, then my parents moved to Akron after all us kids were grown. Just wondered since you went to the Cleveland clinic, what an awesome facility! Talk to you soon. Kelly

  • Hi Kelly!

    I actually live in Cincinnatii Ohio. It's about a 4 hour drive to the Cleveland Clinic. My Neuro wanted me to have a second opinion which was great. Everyone was on the same page which was good!

    Where do you live? Wouldn't it be nice if all these MS peeps lived close and we could have a giant support group πŸ‘πŸ»πŸ‘πŸ» Have a good MondayπŸ˜€

  • Hi ASC2 Are you on the 3 or 7 day copaxone? I'm on the 3. For only a yr n half now. How long have you been taking it? Did you find that you had to Chang the needle depths?

    Just curious :)

  • Hi!

    Hope you are doing well this Monday morning!

    I have been on copaxone since February and I do the 3 days. I haven't really had to change my depths, but I do the shots manually on some sites. I find the thighs aren't very fun and the autoject is somewhat painful so I do it manually! How about you? Do you always use the autoject or sometimes do them manually? Any real side effects for you? Nice chatting with you πŸ˜€

  • Ugh it is still morning isn't it? This time change is killing me. Lol

    Its never any fun to take the shots, l grumble all the time that "l dont want to play this game anymore." I also keep asking my dog to take it for me. Neither work lol

    I have had to change the depth on all of settings. And yes l use the auto injector. I just can't see giving myself a shot manually. I get the itching if l dont leave the ice pack on long enough. But l have stuff to do lol l do find that ice before and ice, heat then ice again work the best. Just very time consuming. What about you?

    What time do you take your shot? I'm curious. I'm starting a poll lol

  • Hi KELLY!

    I actually live in Cincinnati Ohio. The Cleveland Clinic was about a 4 hour drive for us. My Neuro just suggested to get a 2nd opinion at first which was great. The CC pretty much agreed with everything my neuro did so I felt good about everything. Lucky to have that facility not too far I guess. Where do you live? Wish all these MS peeps lived close so we could have a big support group....wouldn't that be awesome πŸ‘πŸ»

    Have a good Monday πŸ˜€

  • They have attributes the PML odds based on how long you stay on Tysabri - a very important gauge is whether or not you test to have JC virus antibodies.

    My neurologist does bloodwork for JC antibodies monthly...

    if you're positive, stay away from any DMT with PML risk. If you test negative, getting PML is supposed to be unlikely.

    - in regard to the lymphocytes, keep us updated.

  • Chris, I read in one of the posts that you were having a rough time, I'm so sorry. Why don't you tell me what is going on, sometimes it helps to unload. In fact, you can even whine, bitch and moan if you need to! Really I am very sorry things are rough. One good thing about this site is that we all get it. So let me know how you are doing, you are in my prayers. Kelly

  • Kelly, I hope today is a better day than yesterday was. Thinking of you and praying for peace of heart and mind today.

  • TUTU, today is so much better than yesterday. Thank you for your support. This is such a weird disease, two good days, one bad day! It sure makes it hard to plan things, doesn't it? Hope you are having a happy day. Kelly

  • So happy to hear today is better, Kelly. And I agree, MS and its myriad of symptoms make future planning difficult. (I'm currently trying to better schedule my miralax supplements so I'm not surprised 😱 in the middle of an outing or appointment.)

    Still keeping you, timandlisa66 and Jimeka and your appts tomorrow in prayer. If I forgot anyone, I'm sorry!

  • Being a Miralax user, just had to let you know I had a good chuckle.

  • Praying all goes well at your appt tomorrow.

  • Tutu, thanks for wishing me well. I will let you know how it goes. I could really relate to your miralax comment, even had to laugh that someone else might panic over that issue! This silly disease. Thanks for your friendship. After I got D.C. and cancelled too many coffee or lunch dates a lot of people just quit calling. So this site opens up a whole new source of relationships. My hubby thinks it's great. Take care. Kelly

  • I'm sorry about your cancelled 'outings.' But I understand. I'm sure most-if not all-of us here do.

    I like how we can share anything. Although MS affects us all differently, I know that at least one person here understands and maybe experiences the same thing I do. It makes me feel less alone and better understood. I also like hearing different perspectives and solutions based on our various experiences.

    My husband is happy I've found this site and everyone here, too. 😊

  • Tutu, how are you? I haven't talked to you for a few days, I hope all is well. I was so excited about the ms warrior shirt I had to order one too! We ARE warriors! And I'm REALLY excited...I ordered my trike today. So I will be able to get some exercise! I'm pretty skinny but need to use my muscles more. I wish there was something we could all do for Jimeka to get her what she needs. I would absolutely contribute in a minute. I'm sure others would too. I don't know, what do you think? We all need help sometimes. Take care. Kelly

  • Kelly, I am so happy about your trike! Do you know how long it will be before you get it? I know you get snow in SLC, but maybe not enough to keep you from riding your bike after you get it. And what about your neighborhood? I am assuming it's level and won't be too much of a challenge?

    Streets in my neighborhood challenge my walking, especially one steep hill in particular. But I like a challenge! πŸ˜‰

    I have a stationary recumbent 🚲 collecting dust in our garage. It's been too many months since I've ridden it. I much prefer walking outdoors. Sadly, I haven't done that in nearly 5 weeks now due to some bladder issues. But that's getting better and I hope to be back out stomping along soon!

    I've been sharing all the t-shirt ideas with my husband. He likes one that says, "Got myelin?" I was trying to narrow down my choice among all the great designs...and then Erash shared the turtle 🐒 shirt. That one really speaks to me.

    I am praying Jimeka's doctor will be able to help her get the device tomorrow. I don't quite understand how living in one 'town' rather than another can be a deciding factor, but I haven't given up hope yet.

    I hope you are feeling much better now. It seems it has been a rough week for many here.

    Wishing you a good night...

You may also like...