Aa
Monday, Monday - What's going on???
Hey all,
Welcome all newcomers who I've not met yet. I've not been around so much, so I do apologize for not saying hello, or lending my two sense to what you have going on.
This is our weekly roundup where we share what we have going on for the week. Spill whatever you want, your good, bad, or ugly, or even just your WANTS!
Summer is winding down for me. I have been trying to enjoy time with family and friends when not working. I'm proud to say I'm neglected all things that need dusting or organizing, and loving every minute of it. I'm sure when I finally just have to address it all I'll feel differently, but for now I'm just going with it.
No doc appts this week or month for that matter. I'd like to commit to catching up on what you all have going on this week. So, what's up? How you been? What's going on?
(((hugs))
shell
Welcome all newcomers who I've not met yet. I've not been around so much, so I do apologize for not saying hello, or lending my two sense to what you have going on.
This is our weekly roundup where we share what we have going on for the week. Spill whatever you want, your good, bad, or ugly, or even just your WANTS!
Summer is winding down for me. I have been trying to enjoy time with family and friends when not working. I'm proud to say I'm neglected all things that need dusting or organizing, and loving every minute of it. I'm sure when I finally just have to address it all I'll feel differently, but for now I'm just going with it.
No doc appts this week or month for that matter. I'd like to commit to catching up on what you all have going on this week. So, what's up? How you been? What's going on?
(((hugs))
shell
Cann I find that dealing with it is a daily process. Today was a better day. No episodes and family time included lots of laughter and routine activities. As we learn more about the disorder together, we learn to deal. We have been thru a lot in this family. Homeless, jobless, and pennyless. Together we survived it all. The MS is just another piece to our puzzle. We are phenomenal as a unit and continually strengthened by God.
Wanda- I had tears welling reading your story. Thank you for sharing.
My girls are young 7,5,and 1 so they do not truly understand. I do not hide it. I have explained to them mommy has a thing called ms. It makes my hands tingle and go numb. It makes me very tired and causes me to lose my vision in one eye. ( they already knew this when it happened)
I was going to keep it all to myself but with taking injections and such I think they should know. My 7 year old had lots of questions and that is where it was left. The other 2 are too young. My husband is trying his best to fit into this with support. He feels lost as well bc he can't fix it.
My other family like brothers sister and parents seem disconnected from it all. If they don't believe it, it won't be true perhaps.
My girls are young 7,5,and 1 so they do not truly understand. I do not hide it. I have explained to them mommy has a thing called ms. It makes my hands tingle and go numb. It makes me very tired and causes me to lose my vision in one eye. ( they already knew this when it happened)
I was going to keep it all to myself but with taking injections and such I think they should know. My 7 year old had lots of questions and that is where it was left. The other 2 are too young. My husband is trying his best to fit into this with support. He feels lost as well bc he can't fix it.
My other family like brothers sister and parents seem disconnected from it all. If they don't believe it, it won't be true perhaps.
Thanks for the welcome! Yes I have realized that some people I have met on here have waited years before they got diagnosed. I do feel pretty lucky that I did get diagnosed so quickly with just my legs and feet being numb.
I plan on talking to the doc about how I'm feeling after the steroid infusion for sure when I see him on the 24th! It is slowly getting better everyday, today I woke up and felt a little less drugged up and I feel like I have been able to gather my thoughts easier today! I'm starting to wonder what the point of the steroid infusion was??!!!! I guess its supposed to get worse before it gets better???!!! Heh :/, I haven't even started the everyday medication process yet....yikes!
I plan on talking to the doc about how I'm feeling after the steroid infusion for sure when I see him on the 24th! It is slowly getting better everyday, today I woke up and felt a little less drugged up and I feel like I have been able to gather my thoughts easier today! I'm starting to wonder what the point of the steroid infusion was??!!!! I guess its supposed to get worse before it gets better???!!! Heh :/, I haven't even started the everyday medication process yet....yikes!
Yes, it's frustrating for family that they can't help as much as they'd love to. But they can in less literal ways. They can take over certain household chores on the more difficult days, they can simply offer a hug without a word, they can be open to hearing your updates (I call them 'status reports' and usually tell my husband in the morning what my DEFCON level for the day feels like its going to be!).
So I wouldn't say I 'face my family' with my MS, it's more like I 'include' my husband in it. Ongoing disease = ongoing dialogue.
But I would say that some of what you describe does not sound like a typical MS episode. As Lulu said, don't forget we can have other health issues as well.
Congratualtions for getting on a DMD. You may find this thread of our Tecfidera users (or those considering it) helpful. http://www.medhelp.org/posts/Multiple-Sclerosis/Tecfidera-BG-12-Users-Past-and-Present/show/1941451
________________________________
In other news...
As of Tuesday, I'm on week 128 of my trial. On week 144 I go to the extension (= I'll definitely be on DAC-HYP). I can almost taste it!
Also, I'm still doing voice-over work. Odd little line of work to have stumbled into.
So I wouldn't say I 'face my family' with my MS, it's more like I 'include' my husband in it. Ongoing disease = ongoing dialogue.
But I would say that some of what you describe does not sound like a typical MS episode. As Lulu said, don't forget we can have other health issues as well.
Congratualtions for getting on a DMD. You may find this thread of our Tecfidera users (or those considering it) helpful. http://www.medhelp.org/posts/Multiple-Sclerosis/Tecfidera-BG-12-Users-Past-and-Present/show/1941451
________________________________
In other news...
As of Tuesday, I'm on week 128 of my trial. On week 144 I go to the extension (= I'll definitely be on DAC-HYP). I can almost taste it!
Also, I'm still doing voice-over work. Odd little line of work to have stumbled into.
I'm seeing my new sleep specialist tomorrow morning. My prior neuro was also my sleep doc, so I'm looking forward to a new perspective. I know my apnea/hypopnea index is way up, because my auto-pap machine has tracking software. I'll probably end up scheduled for a new sleep study to titrate my CPAP pressure, and I hope a multiple sleep latency test to figure out the excessive daytime sleepiness and work-dozing.
Sorry. Was trying to say Thanks for the welcome Sllowe and Kyle.
I want to share something with all of you. We walked in the house around 8. I begin to have an episode in front of my Hubby and our two girls (13 & 15). They were terrified. I try to hide this thing from them because of the effect it has on the 3 of them. My Hubby had this look of pity and pain. He walked away with a single year rolling down his face. The girls looked concerned and helpless. My heart sank as the episode passed over and my family went in different rooms. A few minutes later my Hubby comes back, voice full of emotion. " I hate that you're going thru this. My wife is so strong....stronger than me. You've taken care of everybody.....this family,your mom.....everybody depends on you. I wish I could take this from you". By the end of his heartfelt outcry......there was no dry eye in the house. The kids, my Hubby, and I were all boo hoo-ing. We looked like a lifetime movie. I stopped to tell them all. This thing is not going to take me out, it just brings pauses to my day. Has any of you had to face your family with MS?
By the way, forgive me, congrats to you PastorDan. New life is always a joy.
I want to share something with all of you. We walked in the house around 8. I begin to have an episode in front of my Hubby and our two girls (13 & 15). They were terrified. I try to hide this thing from them because of the effect it has on the 3 of them. My Hubby had this look of pity and pain. He walked away with a single year rolling down his face. The girls looked concerned and helpless. My heart sank as the episode passed over and my family went in different rooms. A few minutes later my Hubby comes back, voice full of emotion. " I hate that you're going thru this. My wife is so strong....stronger than me. You've taken care of everybody.....this family,your mom.....everybody depends on you. I wish I could take this from you". By the end of his heartfelt outcry......there was no dry eye in the house. The kids, my Hubby, and I were all boo hoo-ing. We looked like a lifetime movie. I stopped to tell them all. This thing is not going to take me out, it just brings pauses to my day. Has any of you had to face your family with MS?
By the way, forgive me, congrats to you PastorDan. New life is always a joy.
Shell ... Yes it is definite rrms now. Not sure I actually made a post in this. I did find out my blue cross would only cover rebif (I assume the others too) if I have had 2 or more relapses in the past 2 years.
Seems my doc probably knew this but did not take time to tell me. So back 2 months ago when i was CIS he was waiting on treatment for a reason. I would not have been covered.
I assume all this anyway bc my blue cross requested more info from my doc and that is what it was. "Was there 2 episodes in past 2 years"
So rebif was my choice... I am starting on 22 mcg and going from there. I fm an go up later to 44 but no rush for me.
I pick my prescription up tomorrow ... Total out of pocket per month for me $4.49!!!!! I will take that!!!! Thank goodness... :)
My neck is as normal annoying but I can live with it when i take care of it. I do have a disk herniation and a lesion in c spine. I don't believe the herniated disk is too bad bc neuro did not even mention it. I will ask my family doc next time I am there.
Hope u are holding up not cleaning!!! Keep on chillin!!! :)
Pastor----- congrats!!!!!
Seems my doc probably knew this but did not take time to tell me. So back 2 months ago when i was CIS he was waiting on treatment for a reason. I would not have been covered.
I assume all this anyway bc my blue cross requested more info from my doc and that is what it was. "Was there 2 episodes in past 2 years"
So rebif was my choice... I am starting on 22 mcg and going from there. I fm an go up later to 44 but no rush for me.
I pick my prescription up tomorrow ... Total out of pocket per month for me $4.49!!!!! I will take that!!!! Thank goodness... :)
My neck is as normal annoying but I can live with it when i take care of it. I do have a disk herniation and a lesion in c spine. I don't believe the herniated disk is too bad bc neuro did not even mention it. I will ask my family doc next time I am there.
Hope u are holding up not cleaning!!! Keep on chillin!!! :)
Pastor----- congrats!!!!!
This Sllowe. Not big on posting. Just reading the many posts makes me feel like Im not alone with this thing. Although today started out great with the start of TECFIDERA. I was positive and even prayed over the medicine like a meal! Lol I went all day without an episode. Feeling good....then all of a sudden BOOM......it hits me at the hospital after getting some lab work......the sudden tingling, complete numbness, bulging veins, and complete weakness.....leaning against the closest bathroom wall to steady myself. Please God, not now. Then it hits me....this happens alot when I urinate. Could this problem not be the MS? Maybe it has something to do with my kidneys. I think I'll give my regular physician a call tomorrow.
Grandcritter Steven Jr. arrived this afternoon in the greater Kansas City area. 7 lbs. 12 oz. Doing fine, by all accounts.
Hey, I'm here and it's only Thursday.
Health wise all good but the biggest news is that my litle 'baby' boy turns eight today! It has been the biggest build. Gosh he has talked about it for the last four months non stop.
I didn't get the handyman gene unfortunately so putting together his new bike last night was torture. Embarrassingly I broke one of the bike cables but managed to redeem myself this morning by scavaging the brake cable off my bike and applying it to his. All good now and he was so very happy.
The biggest squeal was not for the bike but.....new undies! He doesn't get that from my side I can tell you.
Anyway, happy days. Hope the numb and tingles haven't got control of you and you're making the most of your ability.
Blessings
Alex
Health wise all good but the biggest news is that my litle 'baby' boy turns eight today! It has been the biggest build. Gosh he has talked about it for the last four months non stop.
I didn't get the handyman gene unfortunately so putting together his new bike last night was torture. Embarrassingly I broke one of the bike cables but managed to redeem myself this morning by scavaging the brake cable off my bike and applying it to his. All good now and he was so very happy.
The biggest squeal was not for the bike but.....new undies! He doesn't get that from my side I can tell you.
Anyway, happy days. Hope the numb and tingles haven't got control of you and you're making the most of your ability.
Blessings
Alex
Dennis - our deer are everywhere now - in velvet, and babies abound! Hope those pill keep - keepin you dry!
Lu - no more fun for you - back to work woman! hahah sorry, just couldn't resist ;)
Loliona - not sure how belated this will be, but Welcome! Good luck to you w/your hospital stay and steroid dosing - and, please, please get the name and number of that disguised weed picker/mower for me! Small forest starting in my yard!
NormanG! Welcome to you too! Not sure if you've just arrived here or not, but glad to have you. Hope that Neurontin helps you, it works well for many! See you around!
Carrie!!!! UUUUggh, and, I cannot even do laundry! My washer just broke last night!!! You get some down time lady to recover from all that company.
Kyle - How'd that consult go???
Hvac - Alex, you been on my mind a lot. Hope you were surrounded at those cookouts w/fun people and of course some good grub. Have to get caught up here on how you've been w/that
Cann - So you've gotten your definite dx? Geesh, I really stayed away too long. Excellent choice in med :) I'm glad things have moved forward for you. How's the neck?
Wanda - welcome to you! Congrats on moving onto Tecficdera!
Hreyenolds! Hello to you and a belated welcome. I too was dx'd rather quickly, we are amongst the minority from all who've come through our forum, and those I've met. Glad to hear though that you are moving along towards treatment. Since things are still runnining amuck on you, do be sure to mention this to the doc. Only saying this because I started Rebif not long after dx, and some things I could not distinguish between, i.e, MS symptoms and initial side effects of meds. The worse part of my attack began to subside after 3 months, but major subsiding only after 5/6 months, which was right about when I started a disease modifier.
Thought it was worth mentioning. New to MS, new to meds, sometimes equals the inability to decipher what is what - at least in my case. I may have waited a little bit (not long just a month or two) to get adjusted to my MS. That's just my personal opinion based on my situation and the speed of it all.
Who else? It's only Wednesday!!
-shell
Lu - no more fun for you - back to work woman! hahah sorry, just couldn't resist ;)
Loliona - not sure how belated this will be, but Welcome! Good luck to you w/your hospital stay and steroid dosing - and, please, please get the name and number of that disguised weed picker/mower for me! Small forest starting in my yard!
NormanG! Welcome to you too! Not sure if you've just arrived here or not, but glad to have you. Hope that Neurontin helps you, it works well for many! See you around!
Carrie!!!! UUUUggh, and, I cannot even do laundry! My washer just broke last night!!! You get some down time lady to recover from all that company.
Kyle - How'd that consult go???
Hvac - Alex, you been on my mind a lot. Hope you were surrounded at those cookouts w/fun people and of course some good grub. Have to get caught up here on how you've been w/that
Cann - So you've gotten your definite dx? Geesh, I really stayed away too long. Excellent choice in med :) I'm glad things have moved forward for you. How's the neck?
Wanda - welcome to you! Congrats on moving onto Tecficdera!
Hreyenolds! Hello to you and a belated welcome. I too was dx'd rather quickly, we are amongst the minority from all who've come through our forum, and those I've met. Glad to hear though that you are moving along towards treatment. Since things are still runnining amuck on you, do be sure to mention this to the doc. Only saying this because I started Rebif not long after dx, and some things I could not distinguish between, i.e, MS symptoms and initial side effects of meds. The worse part of my attack began to subside after 3 months, but major subsiding only after 5/6 months, which was right about when I started a disease modifier.
Thought it was worth mentioning. New to MS, new to meds, sometimes equals the inability to decipher what is what - at least in my case. I may have waited a little bit (not long just a month or two) to get adjusted to my MS. That's just my personal opinion based on my situation and the speed of it all.
Who else? It's only Wednesday!!
-shell
Hello there, I have been on this forum for about 3 weeks now and I have already met some of you that have posted on this post and I have to say everyone I have come into contact so far has been AMAZING!
I was recently diagnosed with relapse/remitting MS, UGH! All my symptoms started about 2 1/2 months ago so I do have to say I am thankful I did get my doctors on the process of elimination quick and got an answer quick!
Now to answer your question about how this week has gone....well I started that fun 5 day IV infusion process last Thursday (8/15) and finished my last dose on Monday night (8/19), now that I am done, I am still feeling all drugged up. I feel more blehh than I did before, things still taste funny, my hair feels different, all my symptoms are still there but I'm sure I will have to be patient! I went yesterday and did a blood test for the JC Virus?! Now Monday morning (8/26) I have my app with the specialty eye doc to check for Macular Edema. Trying to get all of this knocked out so I can get on a permanent medication!
I was recently diagnosed with relapse/remitting MS, UGH! All my symptoms started about 2 1/2 months ago so I do have to say I am thankful I did get my doctors on the process of elimination quick and got an answer quick!
Now to answer your question about how this week has gone....well I started that fun 5 day IV infusion process last Thursday (8/15) and finished my last dose on Monday night (8/19), now that I am done, I am still feeling all drugged up. I feel more blehh than I did before, things still taste funny, my hair feels different, all my symptoms are still there but I'm sure I will have to be patient! I went yesterday and did a blood test for the JC Virus?! Now Monday morning (8/26) I have my app with the specialty eye doc to check for Macular Edema. Trying to get all of this knocked out so I can get on a permanent medication!
Hey everyone! Today I received my first MS medication from a specialty pharmacy. Im excited and anxious at the same time. Its a fairly new drug that's just been released this year. Its called TECFIDERA. Anyone ever heard of it? I start taking it tomorrow. I am a woman of faith and Im praying that my results will have a positive result against this disorder. I am a fighter and refuse to give into this thing. In Jesus name!!! Can I get an AMEN!!!!
Wanda- welcome to the best support space I have found. :)
Carrie--- hope the sleep transition sticks. That would totally mess me up sharing a bed with my lo. I co slept a bit while nursing but even then I found I could not rest with a baby with me. To her bed she went. A happy mommy an baby we were! All my girls 7, 5, and 1 are all good sleepers now and well worth the hard transition!! I wuv my bed :) to myself :) lol
Glad your house guest is gone too!
Kyle- good luck with that appt tomorrow. Sounds like a big appt having decisions made.
Norman- I never knew there was medicine for tingling pain... Interesting. My research has only been to the dmd so far. I will be looking into this treatment.
Pastor Dan- I wish the next 2 weeks to fly by for u.
Everyone else---- have a wonderful week!!
Myself I am helping by calling the chain of paper work events to have my rebif approved. It is almost done.
I did find out my coverage needs to show two events in last 2 years to have coverage ... Therefore I now understand why my doc had pushed for more testing.
I can't wait to just get this going. At the same time I am less anxious about everything. I have my final answer and treatment plan started. That was #1 goal. That is all for me now :)
Carrie--- hope the sleep transition sticks. That would totally mess me up sharing a bed with my lo. I co slept a bit while nursing but even then I found I could not rest with a baby with me. To her bed she went. A happy mommy an baby we were! All my girls 7, 5, and 1 are all good sleepers now and well worth the hard transition!! I wuv my bed :) to myself :) lol
Glad your house guest is gone too!
Kyle- good luck with that appt tomorrow. Sounds like a big appt having decisions made.
Norman- I never knew there was medicine for tingling pain... Interesting. My research has only been to the dmd so far. I will be looking into this treatment.
Pastor Dan- I wish the next 2 weeks to fly by for u.
Everyone else---- have a wonderful week!!
Myself I am helping by calling the chain of paper work events to have my rebif approved. It is almost done.
I did find out my coverage needs to show two events in last 2 years to have coverage ... Therefore I now understand why my doc had pushed for more testing.
I can't wait to just get this going. At the same time I am less anxious about everything. I have my final answer and treatment plan started. That was #1 goal. That is all for me now :)
Hi everyone. That was very helpful Lulu. I will talk to my regular physician. I have taken neurotin but I never have pain, just the annoying numbness and tingling. So I stopped taking that.
I went riding this week end and two cook outs. One was the MS bike team my DH is on.
alex
alex
The highlight of the wee is tomorrow's phone consult with my neuro. Discussion topics will include Saturday's C/T-spine MRI and my next DMD. Last Tysabri infusion was 6/29 and I'd like to keep the gap to a minimum. It looks like my insurance has approved Rituxan, so that's on the table.
Wanda- This is the most friendly and informative group of any kind in which I've been involved . Given the broad spectrum of MS symptoms, chances are somebody here has experienced what you may think is unique to you, so ask away :-)
Kyle
Wanda- This is the most friendly and informative group of any kind in which I've been involved . Given the broad spectrum of MS symptoms, chances are somebody here has experienced what you may think is unique to you, so ask away :-)
Kyle
I had a bad house guest last week, she's an alcoholic and had been sober for a year and apparently has fallen way off the wagon. It was a disaster and super stressful as she was drinking excessively and uuugggghhh!
I then had my neices come stay for the weekend which was super fun, I love those girls!
All the demands of last week has left me feeling hit by a truck though. Like you Shell, my house is totally neglected so I've got to get on it this week. I probably have 8 loads of laundry plus a lot of reorganizing. Both my girls have had a growth spurt in the last month so I need to go through all their clothes and figure out what still fits. The greatest news of the summer I think is that I FINALLY got my youngest to sleep in her own room instead of ours. The co-sleeping thing was fun but I'm getting much better rest now. Not actually last night though, the little stinker has been up since 4am! She's 20months old and such a light sleeper, anything wakes her up.
Wanda, I agree with Lulu, tell your doc about the vein thing, that would freak me out too. I don't have any ideas for you but it definitely sounds like something you should call about.
Hope everyone has a great week!
I then had my neices come stay for the weekend which was super fun, I love those girls!
All the demands of last week has left me feeling hit by a truck though. Like you Shell, my house is totally neglected so I've got to get on it this week. I probably have 8 loads of laundry plus a lot of reorganizing. Both my girls have had a growth spurt in the last month so I need to go through all their clothes and figure out what still fits. The greatest news of the summer I think is that I FINALLY got my youngest to sleep in her own room instead of ours. The co-sleeping thing was fun but I'm getting much better rest now. Not actually last night though, the little stinker has been up since 4am! She's 20months old and such a light sleeper, anything wakes her up.
Wanda, I agree with Lulu, tell your doc about the vein thing, that would freak me out too. I don't have any ideas for you but it definitely sounds like something you should call about.
Hope everyone has a great week!
I meant to add that the bulging veins doesn't really fit typical MS symptoms - that is more a vascular and circulation problem usually. Be sure to have this checked out by your regular doctor if you can. How are your blood pressure and your cholesterol levels? Remember just because we have MS we can also have other health issues.
Hi Wanda, and welcome to this special group. I hope you will give us a serious try and see if we fit your needs. I'm so sorry you haveMS but glad you are here.
Your doctor is wise to encourage you to find a support group because it makes a real difference to know you are not alone.
See you around, I hope.
Laura
Your doctor is wise to encourage you to find a support group because it makes a real difference to know you are not alone.
See you around, I hope.
Laura
Had an appointment with my neurologist this morning, I inquired about getting something for the tingling and pain in my feet so he prescribed Neurontin 300mg, so I will pick it up tomorrow and see how it works. Other than that stay on course with Copaxone and Ampyra and let him know if any new issues or problems arise, if not I will see him again in a year. Over all a pretty good considering.
I am new to this site. I have recently been diagnosed with MS and my neurologist suggested finding a support group to help me learn more about it. I'm curious about one annoying symptom. My left arm tingles and my veins bulge like they are about to explode. These episodes happen often, anytime, and last from a few seconds to minutes. Very scary!!! QUESTION: Is there a pill to control this? Are there any natural foods to eat to help it or foods I should avoid? Help!!!!! Im frustrated & aggravated.
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
