I read the threads pretty much everyday...I just hardly ever post. I have been diagnosed with MS since 2008. I started on rebif but switched to gilenya in 2012.
My biggest issue with my MS is the daily pain from muscle spasms. I have finally got so over it, that I decided to try the test for the baclofen pump and have surgery scheduled for September 10 to have the pump implanted. I do have high expectations for a reduction in the daily pain level. It is interesting to me how even on days when the pain is maybe at level 3 out of 10, it is the dailyness of it that wears on you.
Anyways I just thought that I would chime in to this thread to let you know that I am still around.
Typing errors? What typing errors?
Hey, seriously, Sarah: good to "see" you. We pray all stays well on your side of the pond.
Thanks for checking in Sarah! I didn't participate in my first two years of coming here, so you likely won't remember me, but I remember you! I'm also a fellow 'lab rat' of almost three years.
Exciting (if expensive!) times for your family. Sounds like we have a similar game plan; DMDs, eat well, exercise, keep plugging away. Lather, rinse, repeat!
All the best.
Apologies for terrible typing errors above!
I am also a lurker and from posting regularly in my early days of diagnosis, I decided that I no longer needed or wanted such regular I traction on the board. So I just pop in from time to time, take stock of discussions and just have a quick look now and then.
Am doing Ok, still on oral drug trial (similar to Gilenya) after ere years and doing well. I have had a few UTI's and usual muscular aches and pains that come and go but try and exercise regularly, eat well and generally look after myself finding time to relax when I can. My family keep me very use with thee adult children ages 23, 21 and 18 living at home. Eldest is applying for PHD, and two younger ones are off to music school and university so expensive times ahead!
Anyhow hope you are all doing well and good to catch up.
love Sarah x
I'm admit I lurk more than I post. I try to check in every couple of days or more often.
Over all, I've been feeling pretty good considering everything. I've been fairly stable for about a year and half now, some days are better than other. I had my appointment with my neurologist yesterday, went a full year without any new issues, so that is refreshing. But I did inquire about something for the tingling and pain I still suffer from in both of my feet and left hand/arm. He prescribed Neurontin, so I will pick it up later today and see how that works out. The first attack which forced me to seek medical treatment and ultimately to my diagnoses was really rough, the not knowing was worst part.
There's lots of folks here who made me smile tonight, even if your health news isn't the greatest. It does me good to know you are still a part of our family, even if you are now distant relatives.
Keep checking in on us and let us know if we can help in any way!
hugs to all!
Thanks for starting this thread. It is so comforting to hear from so many people who have not been posting for quite some time.
I used to check the forum every other day but now I seem to only check in about every few weeks...although it is wonderful to see so many newbies, it is great to catch up with some familiar friends again!
Odds are, if you son't see me here dor a while, I've perhaps been bkessed with another remission. So we pray. The other side od that coin is why I'm taking up so much board space here layrly. Whoa. Lately.
I don't get to drop in very often. It has been a very stressful year, to say the least. Just happened to stop by for a few moments this morning.
I enjoyed our cooler weather the last several days. Wish it would last a bit longer.
Due to all the stress of my best friend's death in May and my Mom's death just a few weeks ago, my body is going through major fatigue and weakness. I am sleeping a lot. Well, I get interrupted sleep due to the bladder. Sometimes, I'm able to sleep for several hours before waking up. I just need continual, uninterrupted sleep. Looking forward to feeling half way good.
Hoping all of the forum buddies are doing well
Hi I'm here most of the time, just checkin in and feel at time I haven't much to contribute, not sure why I feel that way? I do look at the forum and like to see everyone still here. I see alot of new people and see that alot of people are still having a difficult time with getting answers. Will things ever change?
I guess I've been abit down lately and don't really want to talk to anyone about things so I keep to myself. I wanted to say to Lulu and all that this forum really does help alot of people and I remember well when I used this before my Dx and the help and support I got from so many friends here.
hope all is well and having a good summer, take care and I'll try to stay online.
The only name I reconize is yours. Perhaps from another MS forum?
Thanks for everyone who's taken the time to check-in! So glad to know so many of you are looking in even when you aren't piping up (I go through little phases as well).
For all of you going through some challenging times, I've read your stories and felt humbled and hopeful; humbled by what you face and your abilities to cope, and hopeful that 'this too shall pass' and you can either find peace with your 'new normal' or find help (mentally, spiritually, or pharmaceutically) getting that peace.
I think about you all and wish you the best.
I do stop by periodically to see how everyone is doing even though I hardly ever manage to post.
My husband and I recently had a lovely outdoor dinner at a local Thai restaurant with Laura and her husband during their recent West Coast travels. It was wonderful to see Laura and meet her husband, who seems to be a very kind, good man. It was also fascinating to hear about Laura's stalwart advocacy for the patient perspective in awarding research grants even when up against a gaggle of scientists stuck in the "same old" mode.
On the MS front, I continue to slowly deteriorate. Recently, I am really struggling with spasms, especially at night when I would really like to sleep. I am also dismayed by how weak my arms are getting. It is disconcerting to see how much a mug of tea wobbles when I bring up to my mouth.
On the potentially positive side, I convinced my neuro to let me try Tecfidera (long story). Although the insurance company then denied it, in a surprise move they caved after the neuro wrote an appeal. I've been taking that since late June with nothing in the way of discernible effects, good or bad, so far.
I am still working, for which I am grateful. We were able to buy a single-story house here, which my husband is fixing up and where I hope we'll be able to say even if I continue on this downward course.
Wishing all of you the best.
Those grands are sure special and make life a whole lot better! They also grow up too fast - my oldest is now 8 and going into 3rd grade, which seems impossible. Botox for the eye pain? That drug is a miracle one for so many different ailments, and I hope it gets approved for you and it helps.
Zulma, PR is beautiful and I understand the connection with family. Too bad you can't transplant all of them to someplace cool during the summer months. I have been there in July and I thought I hadn't ever been any place hotter.
Even though the heat and humidity kills me, I have to endure it because my whole family lives here in Puerto Rico. I hat the humidity and how tire it makes me feel, but this is home! Plus, even though we do not have winter per se, I get cold during the supposedly winter months.
Thank you again for your kind words, and I promise that I will chip in once in a while.
Hugs and kisses,
Hi! I saw my neuro this week and complained that the eye pain is unchanged, even though she has tried several different classes of drugs. I asked her what she thought about botox, and she had a colleague come talk to me for a couple of minutes, and I have an appointment to get 30 injections in September, pending insurance approval.
I complained about my fatigue and how I have had to give up things I love because of it (and cried a little bit) and she has set me up with a sleep doctor. When I fired my prior neuro, I also fired my sleep doc, because they are the same person. She mentioned that it almost sounds like I might have narcolepsy, so that should lead to some interesting tests. I'm seeing the sleep specialist next week.
Oh, and my granddaughter is the most wonderful creature on earth. She's 4-1/2 months old now.
Mike, welcome to the world of sleeping with that blasted mask but it sure does make a difference for me. The morning headaches are gone.
Beema , I'm sorry you have that kind of disconnect with being able to interact and respond. Its nice to know you check in on us and keep tabs of whats happenening. Yes, we really do know each other quite a bit!
Great to hear from so many! Don't be such strangers!
I hang out here a little each day just to see how all you are doing. Most days just too hard to type or have a conversation. Feel like I know so many of you after all these years and some days you keep me going.
I check in almost every day, but I rarely post.
I've been on Rebif for 3 years now, and my Neuro thinks it's working for me.
Unfortunately, due to balance issues, un-coordination, fatigue, and cog problems I've been unable to work for over 4 years.
To add to the fun of having MS I've recently been dx'd with sleep apnea, as many others on here do, and now use a vpap machine.
Take care everyone
thanks for checking in. IF you get the time in another few months, would you let us know about your experience with Tecfidera? we're all curious....
I don't post a whole lot but I do still read the threads.
I've been on Tecfidera since 6/5 and so far so good. I don't miss Copaxone one bit.
It's been a busy summer!
We might just need to have you leave the islands and find a place where you can get outside for fresh air without all those worries. So much for it being paradise.