Someone was asking (kitten?) about feeling tired/sleepy all the time with baclofen and morphine in her pump. I wanted to tell her that I read on the pumpster site that fatigue with morphine whas...
I think drs have just "discovered" PPMS as a diagnosis though I admit am rather cynical about drs generally but mine just suggested that I might have PPMS. Eventhough I had a very strong attack at 15...
That tingling/buzzing sounds nasty. Not something I have ever experienced but I see Zakia is posting about something similar - see "second opinion". Maybe you could pool your ideas and come up with...
That sounds horrible. I have had a lot of different sorts of pain for 12 years but have not experienced anything like you describe. Have you tried the fibromalgia forum. Good luck...
Sorry you feel bad that must be very offputting, hope you can hang in and see some improvement soon. Yes, you are definitely right that everyone reacts differently to every drug. I saw this article :...
I have also read that there is a link between the gut and MS. Am very sure that this is true for me because I had very severe gastro at 12 which resulted in lifelong insommnia and a sensitive gut &...
Hey Nick I have been on LDN 3 months and totally love it. It is said to stop the progression of MS (have to wait and see about that) it is CHEAP, low dose and SAFE and has been used in the US...
Hey Nick I have been on LDN 2 months and LOVE IT. After two weeks taking 3mg at night the spasticity decreased noticeably at night but some during the day. Now I can kneel (stiffly) for the first...
Hey katc, We cannot diagnose you but I have to say that whenever something wierd happens to me I know it is MS and generally it goes away after a bit. I would say that for me I am definitely more...
Hi Mamacita, I wanted to say that I agree with you that, for me, diet has always been a huge help. I would definitely give it credit for getting rid of that awful fatigue (though I have no proof of...
Yes, I am grateful every day for the pump but you are right, it is not something to get unless you are desperate. Especially as the guys on pumpsters say it costs US$36,000,00 to have it put in plus...
I worry about being a guinea pig for these drug studies. Its is so experimental and you know nothing about the side effects. I have a MS acquaintance who was doing a MS drug study these past two...
Thanks for that I signed up tho it took me a while to work out how to play!...
Hi Katie, My MS is also left sided and once (10 years ago) my left leg just would not bear any weight at all. It was like there was no leg there at all. I kept falling flat on my face. Scary! My dr...
I do not know about that. I have had MS for 50 years and have been SPMS for 15 but, for me, it still comes and goes. MS seems to be different for everyone. A couple of years ago I was so bad I did...
Debbie, Just try to cut yourself some slack it is really difficult for everyone in the family. I diagnosed myself (I had a lot of clients with MS so it looked pretty likely) and then went doctor...
Hi all, I just know if something really wierd happens it is MS. I try not to worry about it and then it usually goes away. Hang in there....
Pisco, I have one hand that tends to curl up ( tbe hand & the fingers) and I have found that exercising that arm and hand really helps. I have a cross trainer and I focus on pulling on the handle...
Try and find a MS specialist. Doctors tend to make symptoms fit the area they know about. My mother went to a rheumatologist for yeas, he was a really nice guy, but could not work out why she did not...
Katie, Mamacita gave you some good advice - stress can do a heap of damage & I would have thought 2 young kids and grad school would be stressful in itself. I do npt think that it sounds like MS....
Hi Macmacita, I was really interested to hear your comments on diet and I think your diet blog is a great idea. I tried to do the same here for the MS society but it never got off the ground. I was...
Buckeye, I totally love my pump and it has given me my life back. I have a very low dose of baclofen in it (1/300 of the oral dose required) and it has stopped the intense continual pain I had from...
I found cat napping really helpful. Can you nap when the kids nap? Having two little ones is exhausting anyway without MS as well. I seemed to lose that dreadful fatigue when I reduced all the "bad"...
Thanks Buckeye, Since the pump I have been told not do yoga anymore - too much twisting which can damage the catheter in the spine (which is at waist level). Do you have an exercise that can stretch...
Hi Becky & Amy, I have SPMS and am taking Low Dose Naltrexsone and find it very helpful and am seeing a lot of improvements. Someone with Lyme was posting a little while ago about LDN and saying she...
I agree if I cool if my head any way its a big help. My husband has lost his hair and has to wear a woolly hat in winter to keep warm - he says he has read that people loose a lot of heat through the...
Hi Di, I have that problem with sitting and have found that sitting on a cushion really helps!!!! I sit on a cushion in the car and have one with air in it on the chair at my computer. I have started...
Kat13, Sorry about those nasty symptoms. The strange thing is that there may be a connection between MS & migraines (in my experience). My mother had RRMS from her youth (misdxed as rhematic fever) &...
Hi Vocalist, My symptoms also get worse when I am tired and when the sun goes down. I have a baclofen pump now that helps spasticity/pain. The dose is minimal in the day but even tripled at night I...
Hey jib I have had ms since 10. With some sort of attack every 10 - 15 years, which lasted 1-6weeks but then I would be fine. No medication & had a good life. At 45 my mom died and within a month I...
Hi nursejen, I do not get positional numbness but positional pain. I get pain in the buttocks or thigh when I sit I imagine they are both nerve reactions?...
Hi Reactive, I think ignoring it as much as possible is a good idea particularly since you have had a clear MRI & positive advice from your GP. I would steer clear of neuros unless you know of a good...
Tommy, Here, in Oz, there is a support group for carers run by the MS society. Ring your local MS society and they should be able to help you. That fatigue is awful I had it for some years. It seemed...
Hi baseball mom, Doing your own research is very good. I do think that tkeys has given you some good advice and, to me, ADEM sounds more likely than MS. But it might be something more simple. My...
I do not think is sounds like MS. I have a patch of numbness under one foot that has been there, unchanged, for several years. I also had really intensely painful skin sensitivity where the touch of...
Depends on your age. I have been having hot flushes since 45 which happens to some with menopause. I also find humidity makes me feel weak....
Hi there, I know that you can get a blood test for liver function because my dr has said she wants to monitor my liver & kidney function every 3 months because I take low dose naltrexone. I know a...
Hey Baseball Mom & ggirl, That sounds like a really, really awful experience for all of you. I have had RRMS since 10 but much milder symptoms and no medication (they did not do that back then) but I...
Gretchen, Thanks for all your kind advice. Have fun and live it up....
Jenn, I am so sorry to hear you are having these terrible cramps. Both tkeys and DD and a few others have all given you good advice. I too, have had years of these crazy cramps and spasms that (for...
Hey Doofus my legendary friend, A mythical alter ego is great fun, I recommend it. I see myself as a phoenix, a fiery mythical bird with a colourful plumage, who is reborn (from the ashes of its...
Hey +Lyme, Thought I would keep you up to date. Firstly a warning - do not get carried away. I decided that I could run before I could even walk properly. Feeling so good that I tried to carry a...
Doofdonkey, Your story is an absolute inspiration!!! It gives me joy just to know you and all you have achieved. I too, am trying to rebuild using energy and light and am seeing some exciting...
I am excited by the positive improvements I am getting from Low dose naltrexone & the possibility it will stop the progression of my MS....
Hi all, This is a follow up post about my experiences with LDN. My MS predominately affects the left side of my body. After 2 weeks on 3 mg dose my left leg became nice and supple and bendy at night...
Hey Twnkle, So sorry to hear you are experiencing such scary stuff. Sounds awful but obviously we cant diagnose so I am pleased you are getting to see your neuro soon. He will know the best tests to...
Sorry John I do not have any experience with one. But if you search "wheelchair vans" in the search box in top right hand corner (under the join healing well box) there seems to be quite a lot of...
Hi all I was taught something called plucking the hyoid by a speech consultant. Apparently opera singers and speakers use it to strengthen their voices. It works like this - You put your middle...
Hi MM, I have had symptoms come & go but never swap sides. My right heel has been numb for some years but it never gets worse and never goes away. Wierd! Hang in there and hopefully some others from...
Hey Heather, I understand just how you feel. I like the group of GP's I visit as they are both compassionate and open minded & will support me in anything I want to try but they do not really know...