Hi Quix,
Not all of that got understood my little brain but I am happy you are doing so well...
hugs, meg
Dido here for the small brain, I always learn something from your posts, this time I didn't know that spine lesions can disappear or are they trying to heal like a brain lesion some time does?
Really glad that overall your doing better, because then our Mama Bear will be much healthier.
When you find out your Dr's thoughts on Copaxone please share that with us.
thanks
JOhn
A number of interesting points there. The medication for TN was most salient with me at the moment... :) I've actually been trying to figure out why I've never been able to get the pain totally under control. It seemed like it would be well controlled, though not gone, for a while, then flare up again, requiring a higher dose. (Which has now resulted in 3 anti-seizure meds and percocet for breakthrough pain, as you know.) It's been 1.5 years and the pain has never really gone away.
Interesting about the spinal lesion. One question I have though, is that if the spine is so notoriously difficult to image, is it possible they just missed it this time?
Way to go on the weight loss! (Literally, too!) That's good news and slow and steady is supposed to be the best for keeping it off.
Really good news on the remission! Improved strength is great. Now you just have to get that leg healed all the way.
Stephanie
glad to hear of the good positive neuro visit sounds like a keeper.
Can you tell us more about this denervation when you have a few minutes Quix? I noticed quite a few years ago that my right leg was smaller than the left by half to a full inch diameter even though it is the dominant one. I had figured this happened because of the knee joint problems and maybe I wasn't bearing as much weight on it over time. Now fully rehabbed two years after knee replacement and it's still smaller with the calf exactly as you described. I've given up on it ever being restored but haven't had a real clue why it's that way.
So glad the improvement is real and measurable. Now you'll just have to pace yourself as you begin to move about more. Use those spoons judiciously to keep what you've got.
The leg is still swollen? That's actually good news for your weight loss goal! Since water weighs eight pounds a gallon, you could drop a few more easy pounds once you're moving around a little. Start walking >> mobilize fluid >> convert to urine >> store in bladder >> self-cath >> get on scale >> celebrate!
Mary
What good news to hear. We sure learn a lot from each other's doctor appointments. I like your neuro, Dr. C. He seems like a guy who wants to empower her patients by making you part of the team as it should be.
I'd love to see a doctor do the "snoopy dance". Congratulations on losing the 8 pounds. That is really significant in my book. How are you doing it because I know you like chocolate and my favorite, choco chip mint ice cream. :)
Julie
Awesome doctor you have there. I wish we could all find a doctor that would be so into his/her patients like yours is.
I am so happy that you are doing so well. I pray that it stays this way and you can stop taking the meds for the TN. Four days and no pain that is a pretty good start.
Honestly, not sure how I would feel about cathing myself. Seems it would be difficult. Good luck to you with that.
Kepp up the good work on losing weight. I need to start working on that myself, maybe I will start the weight tracker and see if I can make it work for me.
Paula
I am very impressed with you having lost weight and I disagree as I think 8lbs is a lot when added to your total. I have found it difficult to lose weight but was making progress before holiday and with increased sexercise thrown in.. (this was a genuine typo but I thought I wd leave it in as it made me laugh after comments from my previous posts!)
I have not updated my weight trackers as I am fairly sure I have put weight back on now having been on holiday with additional drink, good food, Cornish ice cream and cream teas...I just know that I will have undone all the good.
This wd not be so bad if my husband had not returned from Afghanistan looking like a new lean husband having lost 34 pounds in 5 months from heat, exercise and diet. What is worse is that I am not heavier than him which makes me feel like a blob. So I am guessing I need to refind that motivation and start again.
Well done to you Quix...I feel envious and I love chocolate too.
Love Sarah x
Hey there! All that food sounds so good. Even if you have put weight back on, you still are ahead of the game.
For the benefit of the many non-Brits here, would you describe cream teas? And what's different about Cornish ice cream?
Keep at your 'increased sexercise'!
ess
Sorry Quix for digressing on your thread but to reply to Ess.....
Cream, cream, and more cream
Cornish ice cream is just the most delicious ice cream and it has clotted cream in it...it is soft, creamy and absolutely scrumdidlyicious (new word...the best I could find). Traditionally if is just plain Cornish Cream flavour (sort of vanilla) but you can also have it in any other flavour in an ice cream cone e.g. chocolate, blackcurrant, strawberry
A Cream tea in Cornwall traditionally involves having a scone or three (although in Cornwall they are also known as Cornish splits) which you put homemade strawberry jam or whatever flavour you like and then a pile of Clotted Cornish Cream. Then you also needs to have some very nice English tea with it.
Perfect heaven if you have a thin small waist and need to put weight on! Alternatively just enjoy and think to hell with it (Much better option!)
Love Sarah x
Thanks for the explanations and thanks to Ess for asking. Lucky for my already too far around waistline that I'm happy with plain royal Earl Grey. It's obvious these selections are yummy but any food described as CLOTTED leaves a distasteful thought to linger about my tongue buds. I'll chose to not challenge that with reality and possible temptation should I ever visit my ancestral motherland.
Mary
To Quix,
Thanks for sharing your news I'm pleased that your prognosis is looking good.
Keep up the good work with your weight loss and have many pain free days.
Warm Regards Carole
Q- thanks for the thorough update. Hang in there - you leg will be healded eventually!
I wasn't going to respond to this post, but Sarah's post got my attention and made me sit up straight.....
Cornish Ice Cream sounds wonderful..... clotted cream is a distant cousin of our whipped . It is made with heavy cream and has 60% of so butter fat. Do I have you yet, Mary?
A couple people at work love to do teas with their British Literature classes and I usually get to have some of the leftovers. A scone with clotted cream and rasperry jam is certainly a special treat.
Sorry, Q - the ice cream got me distracted!
Dr. C sounds like he is on top of this and I do want to hear about his dislike of copaxone.
take care, Lulu
Good news all in all, don't you think? I know it is an amazing feeling to know you are actually getting better! I know I certainly wondered when and if after that exacerbation in April, but here I am! Good job on the weight loss as well!
I love ice cream, too. It is my absolute down fall, especially in the summer. I rationalize it by saying "Well, it is helping to keep my core temp down, and isn't that a good thing?"
Take it easy now!
Sounds like a very positive visit! CONGRATS! on the weight loss especially in light of the immobility!!!
Once again, you have brought and explained to us new info, thank you for always clarifying and intriguing us with more info to make our understanding of this MiSerable disease more in depth.
Next time , please video the doc and the Snoopy dance!!!
Thanks for sharing such a positive visit. It's good to hear good news amongst all the bad reported here on the forum!!!
Continue to follow the doc's orders (that doesn't mean Doc Quix's-it means the doc you pay for his services) and keep on with the weight loss and steady improvements!!!!
Take care of yourself,
Ren
PS guess we missed the slumber party date. When is the next open date ???? :-) )
quix,
so delighted to read all of the good things happening for you!
hope the swelling goes away soon....
xo michelle
Quix,
I am happy for the positive news, and congrats on losing weight if it makes you feel better! I also join the group in wishing you continuous recovery.
Pablo
So glad to hear that you are doing better in alot of ways. I know that you are no longer taking Avonex and am pleased to hear of your continued improvement and actually a reduction in lesions.
When I took Avonex for several years, then came off of it, I believe that the Avonex was responsible for my lack of an relapses and some improvement on MRI. I believe it was the Avonex and don't care if the doctor's think otherwise. Avonex and it's side effects can be hard on some of us, but I still think it's an excellent drug in the fight against MS and it's progression.
I, too, am not on any DMD now and know that I am taking a risk with further progression of the MS. I'll take my chances, although I know that I indeed have progressed. I have gotten NO real exercise this entire summer, because I have spent the season inside. I just can't take those 90 to almost 100 degree days. Can't do it and won't do it.
Sounds like your ankle is healing well and you'll be able to kick some "aspirin" soon, when other's need help with their idiot Neuro's. The bon fires aren't working. I think that most of them are due for an "aspirin" kicking. Maybe the whole foot up the aspirin would be better.
Big Smiles and Big Healing Hugs sent your way, Quizzle sticks....We love you, precious one.
Heather
Glad you are doing so well and had a good doctors appointment! :) xo Linda
Congratulations to you Quix!! Improving health and losing weight!! You go girl!
red
Whose neuro was it that was saying that MS is really just a big grab-bag, and all the different categories we're trying to fit it into are really arbitrary?
Quix, to me it sounds like a form of PPMS, but with remission. Is there anything that can be done about the atrophy of the leg? Like a TENS unit or something?
I'm glad to hear you're feeling better!
Quix,
Wonderful news for you!!! It truly sounds like you have a wonderful neurologist. I am jealous. I wish it was my neuro too....
Keep up the great work.....
Thanks for all the info....
terri
Thanks everyone.
Jen - you know, that I have always felt that my course acted more like PPMS, but now I have to say that I have improved - not just stabilized - in several symptoms - right arm weakness, right leg weakness, Trigeminal Neuralgia.
And, I will talk to the orthopod next week when I expect to be cleared for gratuitous walking if PT might help the atrophy.
Ren - the Slumber Party is still on. All we need is two or more people to let me know when they can come. You all can come one by one, too, but then it is a sleep over. For the men. Down't worry about braiding hair. We can also braid beards or give facials. Or exfoliate together.
Where is that hilarious post about the cold-waxing and hot bathtub???
Quix