I was upgraded to secondary progressive, but this is the first new feeling I've had. Feels like a hairdryer is blowing on one spot on my thigh, high up where leg attaches. They're just passing...
thank you admin! i am so sick of being offered viagra! for crying out loud, i'm a 65=year old woman and have no possible use for it! it didn't take more than a critical overview of life as i know it...
have had it with cold/snow and feeling lousy. have visited costa rica 6 times and after this last time, decided i had to move there. area i'm moving into is like eternal spring including showers, but...
have been to costa rica several times ... found gel packs on internet that can be kept in freezer. wrap one in a cloth & put inside a cap and it helps a great deal. there are also cold vests that...
had the same problem with that and 2 others...so neuro put me on ivig drips which helped until i went into secondary progressive ms. now on ampira & baclofen and still get pain, unsteadiness but...
i sympathize with you. i refuse to stay put and hurt, but friends "worry" when i take off to costa rica for weeks at a time. i'm off for a 3-month trial living there for possible relocation. they...
can't help you with the half million, but there are cooling vests and caps out there that do help. also some neckwraps that help. i got cooling/heating gel paks on the internet and keep them in the...
don't remember exactly, but it was at least a month. began w/one 2-day drip/month and ended w/two 2-day drips. once it kicked in, i felt much better. did take a long time to work, though. it gave me...
sorry so late in responding... only check in on occasion. i had ivig for about 4 years. at the time i had rr ms and it gave me a boost. felt better after drip. had 2=day drip twice a month....
i get a lot of lower back pain, but figure it's because it's my gait. not exactly graceful when i move. usually take generic naproxin and lay down for a while. linda...
since being dx w/secondary progressive ms, off ivig drips (not doing much), but neuro put me on ampyra 10mg 2xday. was hoping/expecting sudden burst of energy, throwing my cane in the trash and...
botox worked well to stop nightly cramping and spasms in calf and toes. about time for a refresher. shots hurt but neuro had someone spraying area w/numbing agent. worked immediately. had been that...
may not be the same pain, but i get sharp grating stabs like a vegetable peeler is taking off layers of skin and flesh. also got woken up by a particularly bad burning/grating pain. my toes feel like...
Balance, walking, writing, hearing, night sight are not so great. oh, that is me. got dx w/secondary recently and finding it a new disease. double vision comes out of nowhere, ants walking on good...
after viewing recent mri, neuro dx me with secondary progressive. took me off ivig because it doesn't seem to make any difference. now on ampyra, but only for about a week. awoke in the night to...
have suspected it for a time, getting the actual dx of spms has knocked me over. had very bad flare in the spring when i could barely walk, couldn't read because eyes kept flipping from line to line...
Last mri i had was two years ago, but i feel symptoms are increasing/changing. Neuro thinks i'm the same, but ordered an mri to be sure... but said he doesn't expect any changes. instead, he sees ms...
can't say that i envy you! this can be a long and frustrating road, but once you're approved, it's okay. went on ssi before i was dx w/ms. was recommended tyhat i apply by psych i was seeing. had to...
I order the patches through the internet at vitasciences.com There is another company that has them for less, but the patches were poorly made and self-destructed when i peeled them off. went back to...
yes, it is winter, but northeast hit again with snow. question is: does anyone out there feel changing weather in their ms limbs? i even predicted a storm when none was forecast. even with meds, toes...
i have pernicious anemia but not ibs... have ms. pernicious anemia means your body cannot use vitamin b12 taken orally. called pernicious because people used to die from it. i started w/b12...
has anyone tried botox for spasticity and/or cramps? my neuro suggested i try it to relax my ms foot and toes. will be having the injection in a month, but have time to research/consider it. linda...
just saw neuro today for same problem. begins at 2 or 3 in afternoon and i'm ready to go to sleep at 4:30. his approach was to cut out some meds that might be dragging me down, so getting off...
began on baclofen 10mg two 3xday and also hit the wall on occasion. doctor cut dose to one morning, one at noon and two at bedtime when my cramping is the worst. seems to be working except sometimes...
love healingwell. went to thyroid group first and found a list of hyper and hypothyroidism symptoms. you must go to costa rica if you haven't been! it is paradise! this was my 3rd trip there and...
GRRRR! why doesn't the human body come with an instruction booklet? went to costa rica at the end for june, first for 2 weeks, but extended to three. stayed at b&b while volunteering at a sloth...
i quit! what next? dx w/multiple sclerosis four years ago. makes me tired, sore muscles. however, lately had major diarrhea, body temp at least 2 degrees below normal and chills at times. ... and...
Great site! thanx.... linda...
as if nj summer isn't bad enough, went to costa rica for 3 weeks in july. was wonderful! worried about heat, so got some gel paks to keep in freezer where i stayed and stuck a wrapped one inside a...
Mother is actually doing better at times with hospice care at her nursing home. The last "family" conference (me) was about putting her on hospice to get her additional attention and hence, mental...
here in the northeast, been having weather from the 60s & rain to upper 70s/80s off and on for 2 weeks. have found myself increasingly exhausted with cramping and pain in ms leg. hear others in the...
used copaxone for almost a year, but had painful injection site no matter what i tried. had similar problems with rebif. many readers have had good experiences with both, so it depends on the person....
i genuinely miss working as a freelance journalist and walking hours to cover feature stories for local newspapers. not exactly high pay, but good exercise and interesting time spent. now have...
thought i was the only one with reading troubles. find i need a ruler or similar device especially with hymns and/or reading from bible at church. no memory of where i left off in the plot in novels,...
went thru 3 or 4 local neuros until i got fed up and asked my gp for a referral. now i travel an hour by train, but very glad i do. you might contact your local ms chapter for some help on this. they...
you might find a book i was referred to by an ms patient: "reversing multiple sclerosis" by Pepe & Hammond the person i met used this book religiously. has to do with diet, vitamins, supplements and...
ah, yes, wonderful spasticity! mine feels like someone or something is taking a vegetable peeler to part of my left thigh. then there's the feeling that toes are all trying to cross over each other....
Janice and I went to see your mother last Saturday. I have such mixed emotions. She was being fed when we arrived so she was awake. She appeared to know us and was able to carry on a limited...
you are one lucky person to discover an understanding and knowledgeable doctor! i see a neuro who, like yours, keeps up on ms studies. before finding him, went thru about 3 or 4 other doctors who...
very sorry to hear your news. stress not good for ms. i'm also on ivig, but have had nj paad, which is for elderly and/or disabled people, and that covers the drip. my regular insurance (aetna...
have heard tales saying to exercise for ms to keep muscles loose, and not to exercise because spasticity may increase. which is it? want to hear about experiences of others with various types of...
yay! a genuine working hairy-legged womyn! love that hairy look! as i recall, i had the mri both with and without contrast. the final clincher was the spinal tap. also, i saw a neurologist at...
this not-knowing can be so frustrating! i saw at least 3 neurologists before finding one at a teaching hospital who came to the diagnosis for ms. certainly not an expert, but if the symptoms are...
Good grief! that sounds so painful! sorry t hear you're having such troubles. have ms pain that feels like a veggie peeler is taking a layer or two of skin off. do get those charlie horses, but the...
there is a website that i have found useful when it comes to meds: www.askapatient.com gives actual patients a voice on side effects and outcome of using meds. linda (mod note: just activated u'r...
i have handicapped plates on my car and i did at first feel guilty about using them. then i realized that others are using these parking aids that have more invisible diseases like heart conditions....
does anyone have major muscle cramping and stiffness during cold weather? have lived in NJ all my life, but this year my ms leg has major problems. take baclofen 10mg, but don't like to take it when...
i too have horrible cramps ... feels like my toes are trying to cross over each other. on baclofen 10mg 3Xday, but usually just take it as needed. at night also take seroquel for sleep. like so many...
guess i'm the ivig specialist... been getting it since aug. 2006. last mri showed a hot spot gone and no new lesions. also feel better after my drip. getting it twice a month for 2 days each. the...
My major hope is to keep up with my expanded volunteering at local rehab. centers. I visit people and offer prayer or just talk. it is very fulfilling, but sometimes my ms slows me down. Instead, I...