Leg Problems--Still

Tertle said...
Do you guys think I should switch??

Once again...if your doctor believes you should switch, and you don't think the Beta is working..then switch.  You can always switch back.

But don't expect us -- who are not doctors, who don't know your precise situation -- to make that decision for you!

I wasn't asking for an answer from you guys, Just an opinion, sorry if I made you guys think otherwise, I am very confused and nobody in my family or close friends would even know the difference between the two..

And i did make a desicion tonight, I am switching. I already talked with my docs nurse and she called it in. Hope for the Best...

tertle??

Please read my post (its long but i put some things i learned from my neuro in there about beta and copaxone hoping that you would read. Its titled ..Update from Neuro visit.

We cant tell you. Just as if we asked you, you cant really tell us. I think that if you read the post i did. If you realize this was a recent conference in Fla and i dont live anywhere near there, meaning all neuro's traveled for this newsbreaking getaway conference. It tells you what they found between the two: equality.

I even asked my neuro for my sake and with thoughts of you, If this were your body?? again pls read the other thread as my recent posts have been so large.

I think your going to make a right decision based upon what you yourself have seen. If you have had 9 months to a year i think you get a pretty good idea of how your going to feel toward the one your on. Do not expect miracles with any of them but...you really DO have to understand that no matter how many researches, proofs.stories of success of failure, Your body may NOT work like any of ours and therefore you may not do well on Copxone or it may be a miracle type of thing for you. Hon? We wish we knew these answers ourseelves, for ourselves even. We have to weigh risk vs benefit.

I think your going to choose the right one for you. I dont think your satisfied with the amount of attacks. I also think they are equally as good and that your body may do great on the other. It may not be different in amounts at all though. There are NO gurantees.

Please? Read my thread on visit to neuro , I specifically asked about Beta vs Copaxone and they had just completed a new trial with the two and had the results!!!!!!!!!!!!!

((((((tertle)))))))))))))))), i DO know how hard it is. The stress of us making life altering (possibly) decisions on top of not wanting to make the wrong one, sure doesn't make us less anxious or at peace. But when you do decide i think you will be at rest with it.


An idea about your nightmares? They say keeping a journal ( i know we get tired of journals) but of writing down what you feel are your worries of the day and (this part is important) to then shut it before bed and push into drawer, some experts feel this helps the mind feel that it has dealt with the worry and when you put it in the drawer its the minds feeling or idea that you've closed that issue for the night. Nightmares sometimes stop when peole try this.

You could just number them like 1. which med do i want to be on 2. etc....

then put them in drawer for the night. Dont take the worry with you.

i pray you sleep well, think also as you lay about something nice. When you find your mind drifting to decision making , try to redirect it to flowers, whatever you love. Whatever is soothing.

thanks

kiera

Hey Tertle,

I am glad you made a decision.  Good for you.  I love my copaxone.  I am by no means an expert.  Copaxone is the only thing I have ever been on.  I have had pretty good results with it.  I absolutely love how easy it is.  I have virtually no side effects from it.  I am so glad about that. 

Keep us posted.  You must feel better having made that decision. 

Love and prayers,

Hi Gamma,

Welcome to the MS board.  I am glad you found us.  51 one years!!!!!  Wow that is a long time.  Have you had MS that whole time or is that counting years with symptoms?  Do you take a progression therapy???  If you do, which one.  We certainly would like to hear how you are doing and managing with this disease. 

Again, welcome to the board.

Love and prayers,

Gamma,

Welcome to this forum! So glad to have somene with so much experience. You've all inspired me to hook my treamill back up (ill be sure to hold the rails) and go slowly. I cant really add going to PT as i live so far out in the country and my little boys school bus schedule, not to mention the other various appt's I tend to have all of the time. Thankfullys it's downsized lately but that allows me to do things to my home that i've missed doing. Also will allow me (with cooling vest) to continue with my flower gardening and veggie gardening.

I realize Gamma, that you've had Ms longer than there has been injections, but I also would love to know how many you've tried or if it be only 1. and which one you are on. I had my doctor prescribe me bathing cloths as warm water triggers me and its winter, so cooler showers arent working for me. Do you have anything you can share that's helpful for hygiene?

((((((Tertle))))))))), i knew what you meant. We do have to respond as we did and tell you that we cannot recommend which one as we'd be in trouble for such a thing. I did know though that you were asking our opinion based upon what you had shared with us. I'm glad you switched ( i can say that at this time), due to the reasons's youve told us, your doctor's wanting you to, and Im delighted that youll no longer also have to deal with the flutype symptoms on top of what we go through!!!!!!

I think you made a very wise choice with your doctor, for YOU. Other's have to consider all of their own thoughts about it and discuss with their doctors's as well when thinking of changing a med.

Im glad the exercises are helping you. I tend to think you'll get more function back as time goes on in that leg (no guarantee alert tho), and it may be a thing that returns upon flares. Sounds like some mild damage was done, but that it it also trying to mend and repair some!

Gamma, I sincerely hope that you remain on this board (call me selfish) , but we can learn much from you. Already I'm happy about the thing you shared havnig to do with IF you think you will and do the work ..you will!!!!! ty.

Tertle,
We are here. So please keep us posed on how your doing. I'm glad that your going to do the dream thing book....it's helped many people, plus its a great way when your doing your MS journal to refer to it to see if you've forgotten to list anything. It may also help show some patterns in your thoughts and actions during the days (over time) that otherwise you'd never of noticed. I suggest reading it back each month, but not during the tucking it away time!

(((hugs)))

thanks

kiera

Hello Everyone,

Thank you all for all of your kind words and your warm welcome.  I feel that I should offer an explaination.  Since I was 4 yrs. old I have had fibromyalgia.  I don't know how many of you are familiar with that condition.  My neuro told me that it is actually rather difficult to differentiate between the two, because the symptoms are so very similar.  My MRI wasn't conclusive one way or the other and after the third one, I said "Enough".  So I have been treated for years like somemone with a combination of the 2 conditions.  As to what meds, very little, I find the fewer the better.  Ultram for pain, muscle spasms and familial tremors.  Hydocodone for pain.  Meclizine for the vertigo.  I also have Epilepsy, Degenerative Disc Disease, Carpal Tunnel, Migraines(Ultram keeps them at bay) OA, Ra, IBS, Neuropathy, Osteoporosis and several other conditions.  I prefer to treat my conditions in more natural ways, exercise, yoga, Calcium, Vitamin C, yogurt, protien and the right kind of carbs.  I don't buy processed foods, I prefer to cook from scratch.  My crock pot is my best friend in the kitchen.

If you all would prefer that I didn't participate on you board, I surely would understand.

One last bit of advice.  For those of you who wish to start an exercise program, check with your doctor first.  Start slowly, maybe just 5 minutes on the treadmill or whatever and slowly increase you time.   Thanks for listening.

Gentle hugs to all

Gamma

Gamme,

I prefer that you DO post here! My, to of had fibro since 4. Yes i'm very aware of fibro . It's been suggested many times that i have it. Nothing concllusive though. I also have Ibs, Migraines, some Neuropathy, Carpal Tunnel, degenerative disc disease, Chostachondritis, Im anemic and short of folic acid, and borderline severe deficient of vitamin D. I can relate to many of your symptoms and considering they mimmick one another im cerain others can too.

I suffer quite a bit of pain, some neurogenc and some related ao an encroahed neural forimen in the cervical spine.

I also have began to eat "fresh" , and plan on growing what i call my garden for salads come spring.

I have high cholesterol even when consuming water/chickenbroth/jello only..so its just a genetic thing> my corneas are also seperating at basmennt membrane level. The rest, i cant even remember and MS.

I'm thrilled to have you here and I do agree that on the treadmill i will start slow. Very slow. Ill also be doing home strethces and the like
Have uo ever had vivid nigmarares tha do notsop?
I DO.

ive had 3 reallu gooddays an oh ow much that means topersons tihg all of our diseases.Its noo ofen nor does it las for long bu si

I feel we have much to learn from you, and that your life and yourself have much to shae. Id feel so honered to have you here and hope very much that you remain!!!!
Thank you so much for sharing wih us. As onas you hve been dalhing iwth fibro i cant fathom how many things youve went through that others with MS for long period of time an relate to also.

I surely hope you stay@

lovely meeting you

thanks

kiera

Id considered yoga at one time and was told it was an entire religion and not just the exercises.

Either way i think ill try to do the treadmill and gentle stretches. Also walk when the weather allows and my legs do.

Pilates was designed for persons with injury to spine , and developed by a person with a broken or hurt back. I wouldnt be as intense about it but i can take pilates and do what you suggest above with yoga. Take my time. Take breaks, and disown any positions that worsen my conditions.

thanks for offering though

im so glad that you were able to get out. I hope that you begin to do it more often. Isolation is one of the worst things when dealing with chronic problems! I know, i also deal with it to some degree.


thanks

kiera

I second Gamma's comments! Indeed, there are forms of religion that use Yoga as a practice..

but there are MANY forms of yoga that are great exercise programs. Most YMCA's and other such places have yoga classes; senior citizen centers often sponsor classes too, as yoga is great for folks with limited mobility.

Whoever told you that is flat wrong...

I'm sure we'd all heard "it could be worse" , and boy am i finding that out. A routine visit with gp yesterday revealed in im kidney failure. 43%. Flank pain and hiccups which youd think they'd admit due to ARF. It begain a few nights ago , i could literally feel both kidneys cramp up, i can hardly remain awake, flank pain is high and chest pain.

I am to do untrasound today (snowing like nuts) and stress test with possible heart cath. I see a neprhologist whom it usually takes 6 months to see within 4 days. The doctor held me and cried.She's a female christain doctor.

It's been so hard. Not a week without a bomb. I cant and wont complain because i am finding out it indeed CAN always be worse.

Highly unlikely to be eligible for a transpant due to autoimmune destroying new organ. Functioning and quality of it isnt even as high as with dyalisis.

The hiccuping is become scary as even a year ago my creatine clearnce was perfect and size of organs were as well. Its like it as lurkinig but overnight so to speak took the function that i cannot get back.

It hurts. Chest pain as well which is marked as flank but they are also concerned about the lining of the heart and now understnd that my vitamin d..and bone pain probably came from this.

Horrible. But right now, Yoga is the last thing on my mind. Perhaps, if blessed there may be a day that ill think about exercise. I had a visitor yesterday and couldnt hold my eyes open at all. Beginning to wonder if narcolepsy isnt the kidneys causing the sleepiness that indeed sometmes can go to coma.

thanks

kiera

note ****It can always be worse, try to be thankful ( i know this now) if you have MS but your other body systems, such as organs are fine. I know its a hard disease, but there are others that do not afford you the mortality.

Oh Kieara,

I am so very sorry to hear about this latest developement.  I wish I could send good vibes and healing wishes through cyber-space to you the way that we send these messages.

You are right, we all think that we have a lot of trials and tribulations to put up with, but you don't have to look far to find someone else is having even more problems.  Sounds like you are due for a good old fashion pity party.  I give myself one every few months or so.  I just sit down and have a good cry then spend the day on the couch watching movies.  If I'm feeling energetic enough, I might even go outside and throw rocks at trees.  It relieves the stress and doesn't hurt anyone.

You seem to have a good attitude despite everything. Keep your chin up and know that I am sending best wishes.

Gentle hugs

Gamma

Anyone believe int their hearts that there is hope for me to live? I know there are no guarantee's but has anyone heard of any stories that afford that this hurdle can be dealt with?

Id try the yoga now. As i think i do need to meditate and take my mind away from all of this gamma. I truly need to relax. The chestpain also requires it.

I wish i knew if there were a chance for me to survive this. With all theyc done, it would appear there must be something. The neprhologist they r sending me to, they said theyve sent patients to him that they themselves have wondered "whet in the world can he do for them" and he pulls a miracle out of his hat, that being said i am getting the best they have here. Or probably around the few states surrounding me as well. He'd been in business since my mom was young.

I guess im hoping that someone says YES its possible for you to make it through this. Im not holding you to that though!

the nurse told me "you stay so on top of things, your the kind that makes it through everything. She says the ones who have something for 4 yrs and forgets to tell the doctor are the ones they have the most trouble with."

I recall a bladder doctor that firt though i had MS saying the same thing. That id do well as i stay on top of so much. I remember telling her, i cannot treat ms and watch kidneys too! She had just patted my arm and said, i think you'll do more than you realize.

So here I am and i guess im hoping/wishing for "any" success story. Any words of encouragement. If given dyalisis would i perhaps be able to continue on with my life (including that interruption 3 x per week) or is this the end of my road.

No, i do understand you cannot answer all of this for me. Im merely asking for your opinions of how youd feel, or what youd do if you found yourself in this situation. Rather, what you think youd do.
Also if you have happened through reading through medical things online to of came across any good breaks with these typeof ailments.

Pls dont scream at me........ill say it for you!

NO ! you cannot tell me ill be fine, nor can you tell me i wont! Im merely asking if any of you know what course of attion youd take or if a relative of yorus might have kidney problems and how they fair with this problem?


thanks

kiera