Aa
It's Official Now
Hi All..:)
I apologize in advance if this ends up being long. Just felt I needed to be in a place where people understand...
I saw the neuro yesterday. I had the MRI's of my C and T spine, and the report was essentially negative. He pulled up the MRI to go over it with me, show me things and see if I had any questions. How cool was that? He said there was nothing obvious on the MRI's, but that in no way meant that there weren't things going on that we just are unable to see right now. (All I could think of was how Quix had "nothing" in her cord till they did the 3T MRI and it all of a sudden picked up a bunch of lesions.) He said all my blood was negative, as he expected. I told him about the weirdness with my eye this past week, and how during the MRI I could feel some of the vibrations much more strongly on my left side than my right. It was freaky.
He just looked at me and said "This is MS and I'd really like to start treating you immediately." Once he is confident in the diagnosis, he said he likes to be aggressive to try to reduce permanent deficits if possible. I will be starting on Rebif once everything gets set up by the "Rebif nurse".
So here's the thing.... I thought I was so ready for this appointment, come what may. I knew it was either going to be MS or that we were back to square one and not knowing what's going on. He had certainly paved the road and not pulled any punches the first time I saw him. I've had 3 weeks to make peace with the fact that this was a distinct possibility, and frankly the main thing I had felt thus far was relief that I wasn't crazy and interest in the whole subject, which is fascinating in a way to me. And yet I still found myself falling apart in the office... I was horrified as I felt the tears, but I couldn't make them stop... :) Apparently I had the nerve to still be surprised to hear the words....
He and his staff were wonderful to me - very kind and gracious. He told me they will take good care of me, and I know in my heart they will. He still wants me to get the spinal tap, to see if there are any oligoclonal bands. But even if there aren't we will continue treating as planned. I thank God that I have a doctor who doesn't just look at the results of tests on paper, but looks at the whole picture and the whole person. Who is cautious enough to rule out all the variables, but then wants to get on top of it as soon as possible.
Still waiting for the Provigil to be approved, but he gave me some samples for in the meantime. I took 1/2 of one this morning (thank you for the words of caution, Quix!) and couldn't believe just how much better even that made me feel. Then I finally realized just how exhausted I've really been for almost 6 months now.
So now I'm reading more intently since it's no longer just a possibility. I'm going to review my insurance coverage (thank you to whoever it was who recently posted about that - I would have never thought about the prescription issue!) and check into having an FMLA form on hand just in case.
Yesterday was bad, but today I'm in a good place. I know I'll be OK no matter how this goes - I feel very at peace today somehow. I know I will have bad days and bad stretches ahead, but I also know that I am blessed and fortunate in too many ways to count. It is so wonderful to have this group here for support and advice. I will go thru the archives as I get time, but if anyone has any advice or thoughts on either Rebif or spinal taps, feel free to toss it out there... :) Hope you all have a great day!
Rita
I apologize in advance if this ends up being long. Just felt I needed to be in a place where people understand...
I saw the neuro yesterday. I had the MRI's of my C and T spine, and the report was essentially negative. He pulled up the MRI to go over it with me, show me things and see if I had any questions. How cool was that? He said there was nothing obvious on the MRI's, but that in no way meant that there weren't things going on that we just are unable to see right now. (All I could think of was how Quix had "nothing" in her cord till they did the 3T MRI and it all of a sudden picked up a bunch of lesions.) He said all my blood was negative, as he expected. I told him about the weirdness with my eye this past week, and how during the MRI I could feel some of the vibrations much more strongly on my left side than my right. It was freaky.
He just looked at me and said "This is MS and I'd really like to start treating you immediately." Once he is confident in the diagnosis, he said he likes to be aggressive to try to reduce permanent deficits if possible. I will be starting on Rebif once everything gets set up by the "Rebif nurse".
So here's the thing.... I thought I was so ready for this appointment, come what may. I knew it was either going to be MS or that we were back to square one and not knowing what's going on. He had certainly paved the road and not pulled any punches the first time I saw him. I've had 3 weeks to make peace with the fact that this was a distinct possibility, and frankly the main thing I had felt thus far was relief that I wasn't crazy and interest in the whole subject, which is fascinating in a way to me. And yet I still found myself falling apart in the office... I was horrified as I felt the tears, but I couldn't make them stop... :) Apparently I had the nerve to still be surprised to hear the words....
He and his staff were wonderful to me - very kind and gracious. He told me they will take good care of me, and I know in my heart they will. He still wants me to get the spinal tap, to see if there are any oligoclonal bands. But even if there aren't we will continue treating as planned. I thank God that I have a doctor who doesn't just look at the results of tests on paper, but looks at the whole picture and the whole person. Who is cautious enough to rule out all the variables, but then wants to get on top of it as soon as possible.
Still waiting for the Provigil to be approved, but he gave me some samples for in the meantime. I took 1/2 of one this morning (thank you for the words of caution, Quix!) and couldn't believe just how much better even that made me feel. Then I finally realized just how exhausted I've really been for almost 6 months now.
So now I'm reading more intently since it's no longer just a possibility. I'm going to review my insurance coverage (thank you to whoever it was who recently posted about that - I would have never thought about the prescription issue!) and check into having an FMLA form on hand just in case.
Yesterday was bad, but today I'm in a good place. I know I'll be OK no matter how this goes - I feel very at peace today somehow. I know I will have bad days and bad stretches ahead, but I also know that I am blessed and fortunate in too many ways to count. It is so wonderful to have this group here for support and advice. I will go thru the archives as I get time, but if anyone has any advice or thoughts on either Rebif or spinal taps, feel free to toss it out there... :) Hope you all have a great day!
Rita
Hey there,
You weren't yammering at all! :) I really appreciate you taking the time to answer my questions. Please tell me if I'm asking too many - sometimes I get carried away, lol. And I REALLY appreciate you telling me the truth. I'm one of those call-it-as-you-see-it people, and not a big fan of "fuzzy stories" as my mom used to call them, lol.
Ok, hoping to skip the hives, lol. Are you sensitive to meds normally? I have very sensitive skin (I keep trying to tell my husband that I'm a delicate little flower... :) so I'm hoping the injections sites won't be a problem. Gonna take all the precautions and hope for the best! Good to know also that you can flex an injection if necessary - I didn't know that.
Thanks again... I'll probably ask more soon... :)
Rita
You weren't yammering at all! :) I really appreciate you taking the time to answer my questions. Please tell me if I'm asking too many - sometimes I get carried away, lol. And I REALLY appreciate you telling me the truth. I'm one of those call-it-as-you-see-it people, and not a big fan of "fuzzy stories" as my mom used to call them, lol.
Ok, hoping to skip the hives, lol. Are you sensitive to meds normally? I have very sensitive skin (I keep trying to tell my husband that I'm a delicate little flower... :) so I'm hoping the injections sites won't be a problem. Gonna take all the precautions and hope for the best! Good to know also that you can flex an injection if necessary - I didn't know that.
Thanks again... I'll probably ask more soon... :)
Rita
HIYA back,
I was on it for 5 months. I had hives, you name the type, I had them. Full body, head to toe. Swelling, water under the skin, burning, horrifying itching, etc. Skin was red, even when I didn't have hives, etc. If you know anyone w/Lupus, it was very pretty much exactly that type of reaction. Only I believe mine to be drug induced.
I want to add, that I was also on the generic for Restoril (sp?), temezepam 15 mg (1 at night), and Xanax, about 1 per day, only 25 mg. I was on that for a few months.
After 1-2 wks into it, I stopped the Rebif. I then stopped the temazepam. I was put on prednisone to counter the reaction, and couldn't sleep for weeks. So I gave in, and popped the temazepam. That is when I found out that I was reacting to that too, so that I stopped that again. The reaction continued to subside once I went off those. I've also stopped the xanax, since I think temazepam and xanax might be in the same family of meds.
Geez, you really didn't want to hear all this huh? Sorry, just don't want to give you false info, as I am not sure if it has anything to do w/Rebif. It very well may not. Since I was on each of these 3-5 months, there is a strong chance I've developed antibodies to them. I'm still pursuing the allergist, just haven't gotten in yet.
I did the M, Wed, Friday injections. Worked out well for me. Left me w/free weekends. A friend of mine does Tues, Thurs, Saturday, and he says it works good for him. With Rebif, it is every 48 hours, and no longer than 72. So, for example, with the M, W, Friday schedule, if you flexed Friday's dose (by choice, or error), and postponed it until Saturday, you would still be on track.
I promise, no more lengthy yammering......don't want to deter you from asking me Q's. . LOL
ttys,
SL
I was on it for 5 months. I had hives, you name the type, I had them. Full body, head to toe. Swelling, water under the skin, burning, horrifying itching, etc. Skin was red, even when I didn't have hives, etc. If you know anyone w/Lupus, it was very pretty much exactly that type of reaction. Only I believe mine to be drug induced.
I want to add, that I was also on the generic for Restoril (sp?), temezepam 15 mg (1 at night), and Xanax, about 1 per day, only 25 mg. I was on that for a few months.
After 1-2 wks into it, I stopped the Rebif. I then stopped the temazepam. I was put on prednisone to counter the reaction, and couldn't sleep for weeks. So I gave in, and popped the temazepam. That is when I found out that I was reacting to that too, so that I stopped that again. The reaction continued to subside once I went off those. I've also stopped the xanax, since I think temazepam and xanax might be in the same family of meds.
Geez, you really didn't want to hear all this huh? Sorry, just don't want to give you false info, as I am not sure if it has anything to do w/Rebif. It very well may not. Since I was on each of these 3-5 months, there is a strong chance I've developed antibodies to them. I'm still pursuing the allergist, just haven't gotten in yet.
I did the M, Wed, Friday injections. Worked out well for me. Left me w/free weekends. A friend of mine does Tues, Thurs, Saturday, and he says it works good for him. With Rebif, it is every 48 hours, and no longer than 72. So, for example, with the M, W, Friday schedule, if you flexed Friday's dose (by choice, or error), and postponed it until Saturday, you would still be on track.
I promise, no more lengthy yammering......don't want to deter you from asking me Q's. . LOL
ttys,
SL
Hiya.. :)
My meds are supposed to be delivered Wed,. so I'm sure that's why I'm phone tagging with the nurse. My neuro had said to do a Mon., Wed., Fri. schedule - what were you on? Can I ask how long you were on the Rebif before you had the reaction and what kind of reaction you had?
They are doing the titration for the first month - 8.8 for 2 wks, 22 for 2 wks, and then 44 starting the 2nd month. Thanks for the info about the injector - not sure which way I'll go on that issue.
Bye for now,
Rita
My meds are supposed to be delivered Wed,. so I'm sure that's why I'm phone tagging with the nurse. My neuro had said to do a Mon., Wed., Fri. schedule - what were you on? Can I ask how long you were on the Rebif before you had the reaction and what kind of reaction you had?
They are doing the titration for the first month - 8.8 for 2 wks, 22 for 2 wks, and then 44 starting the 2nd month. Thanks for the info about the injector - not sure which way I'll go on that issue.
Bye for now,
Rita
Hi there,
Yes, new beginnings. I just stopped the rebif about 3 weeks ago. I had a drug reaction, but not sure if it was the Rebif. I'm at a bit of a pause for now with that, until I zero in on the initial cause. I was on a couple other things too, which I ended up reacting too as well, and I am certain about those, just can't be certain w/the Rebif since I've not started it back up yet. I do have to find out, as I thoroughly believe in the therapy.
The injector is not too bad to put together, it clicks in, 2 clicks I think. For me, it was less invasive to do it straight up, and I liked having the control over putting it in at my own speed.
I'd say for me, the symptoms were not full fledged all at the same time, which was good. They were gradual. For me, I had a slight fever early on, and then the body aches and pains, and some tiredness, which all were bearable. I'd say it lasted a couple of months. Injecting before bedtime is good, because that way, you may sleep thought the bulk of it. The fever did not last a couple months at all, just a couple of weeks. I was doing really well w/adjusting to the meds.
When the nurse came out, I injected (and it was around 4:00 pm), and was fine. Even had an event at the school that night, just to give you an idea as to how the smaller dosing is tolerable.
Did you alread get your meds? Sorry for asking, if you've already mentioned. Once that script goes through, you should hear from the Nurse that works your area.
ttys,
SL
Yes, new beginnings. I just stopped the rebif about 3 weeks ago. I had a drug reaction, but not sure if it was the Rebif. I'm at a bit of a pause for now with that, until I zero in on the initial cause. I was on a couple other things too, which I ended up reacting too as well, and I am certain about those, just can't be certain w/the Rebif since I've not started it back up yet. I do have to find out, as I thoroughly believe in the therapy.
The injector is not too bad to put together, it clicks in, 2 clicks I think. For me, it was less invasive to do it straight up, and I liked having the control over putting it in at my own speed.
I'd say for me, the symptoms were not full fledged all at the same time, which was good. They were gradual. For me, I had a slight fever early on, and then the body aches and pains, and some tiredness, which all were bearable. I'd say it lasted a couple of months. Injecting before bedtime is good, because that way, you may sleep thought the bulk of it. The fever did not last a couple months at all, just a couple of weeks. I was doing really well w/adjusting to the meds.
When the nurse came out, I injected (and it was around 4:00 pm), and was fine. Even had an event at the school that night, just to give you an idea as to how the smaller dosing is tolerable.
Did you alread get your meds? Sorry for asking, if you've already mentioned. Once that script goes through, you should hear from the Nurse that works your area.
ttys,
SL
Thank you so much! I really appreciate the first hand advice from the folks here who have been on Rebif. I'm sure I'll have more specific questions as the situation evolves.
Are you still taking it - it sounded kinda like you don't any more. If you don't, what made you stop? How long did the flu symptoms last once you were on the full dose - or did they remain the whole time? I'm going into this with the thought I won't have much of that, but if I do I'll just push thru like you did - beats the alternative... :)
Still waiting for the nurse to call me back. I had thought the concept of the auto injector was great, till I saw the instructions. Looks like kind of production - maybe it's easier once I see it in real life, lol. I don't need any help being confused.....:)
Now I'm just trying ot take a deep breath and get ready to start the next chapter. Spring is the time of new beginnings anyway, isn't it??? :)
Thanks again,
Rita
Are you still taking it - it sounded kinda like you don't any more. If you don't, what made you stop? How long did the flu symptoms last once you were on the full dose - or did they remain the whole time? I'm going into this with the thought I won't have much of that, but if I do I'll just push thru like you did - beats the alternative... :)
Still waiting for the nurse to call me back. I had thought the concept of the auto injector was great, till I saw the instructions. Looks like kind of production - maybe it's easier once I see it in real life, lol. I don't need any help being confused.....:)
Now I'm just trying ot take a deep breath and get ready to start the next chapter. Spring is the time of new beginnings anyway, isn't it??? :)
Thanks again,
Rita
Hi there,
I'm sorry about the dx, but so glad you are not in limbo anymore. I'm also glad that you have a confident Dr, who is getting you on treatment right away.
The MS lifelines nurse will call you soon to arrange a day and time where she/he will go over everything with you, and you will do your injection yourself. It is a very thin needle, and sharp, so it's not bad at all. They will start you off on the low dose, and work you up to the 44's. This I believe is standard, unless there is a reason your Dr would want something different.
I wish you well w/the Rebif. I did really good on it. I didn't get the major flu like symptoms until I went to the full dose, and I muscled through those. Wasn't very pleasant, but liveable.
If the nurse is anything like mine, then you will be in good hands. I asked her specific questions too, and she was willing to answer. I had my hubby and kids there as well, and everyone practiced the shot on a little plastic/rubbery thing, so they would know how to do it too, if I had issues.
All the best to you CosmoB. .. I'm so glad you are in a good place. Also, my nurse had me rub the spot 1st, then inject w/a room temp needle, then rub again. She said they suggest ice, but most of her people have told her this works best, so I tried it, and it worked for me. Location is key too, as the booklet shows the back hip area a little low, and she said to grab the high hip (love handles), and thank god she told me that because it goes in like butter. You get stinging if the alcohol is not dry, or if the shot is cool. I always would warm it under my arm, and did it w/out the injector. I knew I'd be like a bruised apple if I did the auto, too harsh for me.
Sorry to go on and on. . . just glad you are moving forward. .
be well,
SL
I'm sorry about the dx, but so glad you are not in limbo anymore. I'm also glad that you have a confident Dr, who is getting you on treatment right away.
The MS lifelines nurse will call you soon to arrange a day and time where she/he will go over everything with you, and you will do your injection yourself. It is a very thin needle, and sharp, so it's not bad at all. They will start you off on the low dose, and work you up to the 44's. This I believe is standard, unless there is a reason your Dr would want something different.
I wish you well w/the Rebif. I did really good on it. I didn't get the major flu like symptoms until I went to the full dose, and I muscled through those. Wasn't very pleasant, but liveable.
If the nurse is anything like mine, then you will be in good hands. I asked her specific questions too, and she was willing to answer. I had my hubby and kids there as well, and everyone practiced the shot on a little plastic/rubbery thing, so they would know how to do it too, if I had issues.
All the best to you CosmoB. .. I'm so glad you are in a good place. Also, my nurse had me rub the spot 1st, then inject w/a room temp needle, then rub again. She said they suggest ice, but most of her people have told her this works best, so I tried it, and it worked for me. Location is key too, as the booklet shows the back hip area a little low, and she said to grab the high hip (love handles), and thank god she told me that because it goes in like butter. You get stinging if the alcohol is not dry, or if the shot is cool. I always would warm it under my arm, and did it w/out the injector. I knew I'd be like a bruised apple if I did the auto, too harsh for me.
Sorry to go on and on. . . just glad you are moving forward. .
be well,
SL
Thank you too! The outpouring of support from everyone here has been just so amazing and comforting... :) I hate to admit, but I'm actually doubly blessed - my family doc is just as wonderful as my neuro. He kept reassuring me when I was honestly fearful that I was going crazy, and never gave up trying to find out what was REALLY going on. He has even had me page him after hours when he wasn't the one on call, because he knows me and knows my case and didn't want me to have to deal with someone unfamiliar. He has told me to call him, any time, about anything, and he will do whatever he can for me. And I have no doubt he will. It is very reassuring for me as I start this next chapter...
Rita
Rita
I'm glad you finally have a diagnosis. I really hate it that it's MS but at least you know and that's a relief in itself. You have certainly got one heck of a doctor. There needs to be more like him. Having one that looks at the whole picture and not just what's on paper would help so many people out. Actually having a doctor who believes you and doesn't think your crazy is great. Hang in there and we are here for you.
I'll be praying,
Carol
I'll be praying,
Carol
Thank you... :)
I know that I am truly so blessed with my neuro and his staff...I only wish I could share him with all the others here who have been treated poorly or blown off entirely.
Now the new journey begins....
Rita
I know that I am truly so blessed with my neuro and his staff...I only wish I could share him with all the others here who have been treated poorly or blown off entirely.
Now the new journey begins....
Rita
Oh my! I am so sorry to hear of your Dx. But on the other hand I am so
happy to hear that you Know for sure now, what is going on. Now you can
take measures to get proper treatment.
Now trust me when I say this, it comes from the botton of my heart:
I am so happy to hear of the wonderful way your doctor and staff have treated
you! It will make for a much smoother road for your future.
All My Best Gollie
happy to hear that you Know for sure now, what is going on. Now you can
take measures to get proper treatment.
Now trust me when I say this, it comes from the botton of my heart:
I am so happy to hear of the wonderful way your doctor and staff have treated
you! It will make for a much smoother road for your future.
All My Best Gollie
Well, we really aren't surprised by this, but I echo everyone's thoughts. You already knew something was wrong and not knowing it's name is awful - like trying to survive on the dark side of the moon. We are ready for every new emotion and every new question from you.
Raising teenagers is a lot like trying to nail JELLO to a tree.
Quix
Raising teenagers is a lot like trying to nail JELLO to a tree.
Quix
Thank you for your kind thoughts... :) This group has been such a godsend to me. You all have helped me more than you realize..
You know we all inhabit a strange world when we are happy one of us finally has a diagnosis, huh? lol. Only someone who has been there can get it. And OMG... the pen has made it all worthwhile!! It's yellow and black by the way... lol.
Jazzy, how old is your teen? Four at once is definitely an adventure! Sometimes my hubby and I look at each other and say "What were we thinking???" lol! But it's never dull... and they are cool kids. But 3 driving at the same time is gonna give me a bleeding ulcer.... aarrgghh!
Rita
You know we all inhabit a strange world when we are happy one of us finally has a diagnosis, huh? lol. Only someone who has been there can get it. And OMG... the pen has made it all worthwhile!! It's yellow and black by the way... lol.
Jazzy, how old is your teen? Four at once is definitely an adventure! Sometimes my hubby and I look at each other and say "What were we thinking???" lol! But it's never dull... and they are cool kids. But 3 driving at the same time is gonna give me a bleeding ulcer.... aarrgghh!
Rita
Hello Rita, I also wanted to say I'm sorry and yet also congratulations, as only folks who inhabit this type of surreal dream could understand. Well, its always a good day when you get a new pen, right? ;p
I have one teen, and wow, 4 would be a trip! Great to have you with us,
Jazzy (Limbolander & diabetic)
I have one teen, and wow, 4 would be a trip! Great to have you with us,
Jazzy (Limbolander & diabetic)
Sorry I'm coming in here late, but I did want to say that I'm glad you are no longer in limbo land and sorry for what the diagnosis is. It sounds like you are handling this well and everyone has said all that I would have liked to so I just wanted you to know that I am thinking of you.
Moki
Moki
Ohhhh no...not brave... :) More like stubborn, lol. I just don't like to give in or give up - just ask my husband! I AM very fortunate that our kids are older and should be able to absorb it a bit easier. I look for them to all react differently over time, because they are each so unique in their personalities and outlooks. Even though having 4 teenagers sometimes feels like being pecked to death by woodpeckers, they are all good kids and I'm crazy about each one of them. Our oldest is in the Air Force and I miss him terribly...he's our human tornado..he goes 100 miles an hour, all the time.
I don't know about the good mom thing. I'm quite sure they would beg to differ sometimes, especially after we've had a come-to-Jesus-meeting with one of them, lol. I always drop on the popularity meter for a while after that! But we try to do our best and that's really all you can do. My husband and I are always on the same page with them and that helps alot. I keep trying to tell them...marriage is a team sport, lol. We talk to each other, we share info, and then we plot against them while they sleep. Parents gotta have SOME fun, right??? :) Talk to ya later...
Rita
I don't know about the good mom thing. I'm quite sure they would beg to differ sometimes, especially after we've had a come-to-Jesus-meeting with one of them, lol. I always drop on the popularity meter for a while after that! But we try to do our best and that's really all you can do. My husband and I are always on the same page with them and that helps alot. I keep trying to tell them...marriage is a team sport, lol. We talk to each other, we share info, and then we plot against them while they sleep. Parents gotta have SOME fun, right??? :) Talk to ya later...
Rita
Amen, Kristin! Rita sounds like she handled the kids perfectly.
You really did, Rita. I'm sure they're so concerned about you, and how all this will affect everyone and everything. Great job! I'm sure it will be an ongoing job. Questions will pop up some more....
Hang in there today! And feel well,
Zilla*
You really did, Rita. I'm sure they're so concerned about you, and how all this will affect everyone and everything. Great job! I'm sure it will be an ongoing job. Questions will pop up some more....
Hang in there today! And feel well,
Zilla*
You are a brave woman! I am sorry you have to get this diagnosis but it sounds like you are starting to let it sink in and realize that everything will be OK.
What a great Mom you sound like too and so lucky to have older children to be able to handle the news and ready to help their wonderful Mom!
Take care and I will be praying for you!
Krisitn
What a great Mom you sound like too and so lucky to have older children to be able to handle the news and ready to help their wonderful Mom!
Take care and I will be praying for you!
Krisitn
Hi...
Thank you for checking on me.... :) You are so sweet and kind. I really appreciate the info about the foot thing. It hasn't happened in a while now, but I will keep an eye on it. Can't remember if I told the neuro about it or not...we were covering so much ground as it was. It's one of those things that seems to happen for a while and then is fine for a long time. I just always find myself looking down to see how the floor jumped up and tripped me, lol. I'm sure it's a blast to watch!
I'm doing good... Still trying to wrap my head around things, but I'm sure that will be a process. I got a call from the pharmacy about the Rebif, and it will be delivered on Wed. Now I wait for the "Rebif Nurse" (RN..coincidence?? I think not, lol!) She will set up when my first lesson is, I guess. The first month is building up the dose, and then as of the 2nd month I'm fully loaded I guess...:)
Told the kids last nite and they seem to be doing well. I told them not to worry, but I didn't want what was going on to be a big secret or a big mystery. (They are 20, 18, 18, and 17.) They have obviously known that something was wrong and I was getting alot of tests, but I didn't want to make a thing of it till I knew what we were dealing with. I explained things in a straight forward way, told them about the injections so they didn't see a syringe and think Mom was shooting heroin or something, lol. I think it made them feel better to know why I've been sleeping so much, and forgetting things - that it's not because I don't listen to them or care about what they say.
I told them if they have any questions or concerns they can ask me anything at any time and know that I will tell them the truth. One daughter wanted to know what it all felt like... :) One son was very concerned because of the memory thing that I was going to forget who they were. I reassured him it's not like that at all. I may forget what he told me yesterday or 5 minutes ago, but I won't forget who any one is.... :)
I also reassured them all that it's something that we will just take in stride and take it as it comes. They can joke about it and tease me about it - I don't want "the MS" to become a big weird scary thing that we only speak about in hushed tones, you know? That's just not me. Deal with it head on, laugh at what's funny, and move along. I don't look for them to show me much mercy, and I wouldn't have it any other way...
Gotta run....talk at ya again soon... :)
Rita
Thank you for checking on me.... :) You are so sweet and kind. I really appreciate the info about the foot thing. It hasn't happened in a while now, but I will keep an eye on it. Can't remember if I told the neuro about it or not...we were covering so much ground as it was. It's one of those things that seems to happen for a while and then is fine for a long time. I just always find myself looking down to see how the floor jumped up and tripped me, lol. I'm sure it's a blast to watch!
I'm doing good... Still trying to wrap my head around things, but I'm sure that will be a process. I got a call from the pharmacy about the Rebif, and it will be delivered on Wed. Now I wait for the "Rebif Nurse" (RN..coincidence?? I think not, lol!) She will set up when my first lesson is, I guess. The first month is building up the dose, and then as of the 2nd month I'm fully loaded I guess...:)
Told the kids last nite and they seem to be doing well. I told them not to worry, but I didn't want what was going on to be a big secret or a big mystery. (They are 20, 18, 18, and 17.) They have obviously known that something was wrong and I was getting alot of tests, but I didn't want to make a thing of it till I knew what we were dealing with. I explained things in a straight forward way, told them about the injections so they didn't see a syringe and think Mom was shooting heroin or something, lol. I think it made them feel better to know why I've been sleeping so much, and forgetting things - that it's not because I don't listen to them or care about what they say.
I told them if they have any questions or concerns they can ask me anything at any time and know that I will tell them the truth. One daughter wanted to know what it all felt like... :) One son was very concerned because of the memory thing that I was going to forget who they were. I reassured him it's not like that at all. I may forget what he told me yesterday or 5 minutes ago, but I won't forget who any one is.... :)
I also reassured them all that it's something that we will just take in stride and take it as it comes. They can joke about it and tease me about it - I don't want "the MS" to become a big weird scary thing that we only speak about in hushed tones, you know? That's just not me. Deal with it head on, laugh at what's funny, and move along. I don't look for them to show me much mercy, and I wouldn't have it any other way...
Gotta run....talk at ya again soon... :)
Rita
Yes, Heather's right. Talk to your doctor about the foot drop. That was one of my worst symptoms, when I had trouble walking last spring (I am not diagnosed). I tripped on the lines in the carpet! I still have sensory symptoms and some weakness on the tops of my ankles. Do let your doc know!
I really wrote to see how you were feeling today. How are you?
Little squeeze,
Zilla*
I really wrote to see how you were feeling today. How are you?
Little squeeze,
Zilla*
You may have what is commonly known as "foot drop" in your right foot. Please tell your doctor about this, since there is a device that can help you prevent this. One is called a walking aide the other is a device that keep your ankle straight, so the foot doesn't flop downward. Foot drop is very common with MS.
There are things to help.
God Bless you sweetheart. I DID send those prayers up for you. I prayed that you would "feel" my prayers and the strength that I am sending your way.
Big HUGSSSSS,
Heather
There are things to help.
God Bless you sweetheart. I DID send those prayers up for you. I prayed that you would "feel" my prayers and the strength that I am sending your way.
Big HUGSSSSS,
Heather
Hi... :)
Yes, if I understood correctly the day I first saw my neuro, he said my left side was hyper reflexive and my right side was dulled. Also, when we did all the entertaining maneuvers, like the stand on one foot, finger to nose, finger to finger things, I guess my right side was "clumsy." (So I guess that makes me dull AND clumsy - kind of a deadly combination, lol.) For what it's worth, most of my symptoms happen on my right side - even when I look back over the years. Whenever I have a spell where I seem to trip on flat floors alot, it's always my right foot. The tingling I currently have is my right face and right leg. The joyous MS Hug of course goes all around... :) But the weirdest thing was when I was getting my MRI... I could feel some of the vibrations go up my left side like a shock wave almost, but not remotely the same on my right side... If there's anything else I can help with just ask away.... :)
Rita
Yes, if I understood correctly the day I first saw my neuro, he said my left side was hyper reflexive and my right side was dulled. Also, when we did all the entertaining maneuvers, like the stand on one foot, finger to nose, finger to finger things, I guess my right side was "clumsy." (So I guess that makes me dull AND clumsy - kind of a deadly combination, lol.) For what it's worth, most of my symptoms happen on my right side - even when I look back over the years. Whenever I have a spell where I seem to trip on flat floors alot, it's always my right foot. The tingling I currently have is my right face and right leg. The joyous MS Hug of course goes all around... :) But the weirdest thing was when I was getting my MRI... I could feel some of the vibrations go up my left side like a shock wave almost, but not remotely the same on my right side... If there's anything else I can help with just ask away.... :)
Rita
hi rita,
what eveyrone says here and ditto.
so , you look in the mirror and see a big zit on your face, you know it is there,
but you really didn't want anyone to see it,not really,
let alone actually have them say the words...
"hey, you have a big zit on your nose!'
this is the kind of milestone date you don't want marking your calendaar , i'm sorry , amo
what eveyrone says here and ditto.
so , you look in the mirror and see a big zit on your face, you know it is there,
but you really didn't want anyone to see it,not really,
let alone actually have them say the words...
"hey, you have a big zit on your nose!'
this is the kind of milestone date you don't want marking your calendaar , i'm sorry , amo
As long as it's a good GEL pen!
Mom~~What a lovely message. Being the mother of five boys, and having a brother with Crohn's disease, I feel like I can empathize a tiny bit with you. Your son is lucky to have such a wonderful supporter. I'm sure he knows how frightened you are. Hang in there.
Much love,
Zilla*
Mom~~What a lovely message. Being the mother of five boys, and having a brother with Crohn's disease, I feel like I can empathize a tiny bit with you. Your son is lucky to have such a wonderful supporter. I'm sure he knows how frightened you are. Hang in there.
Much love,
Zilla*
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