can someone help??

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can someone help??

Postby sunshine12 » Thu Jul 29, 2004 11:48 am

hello all

i will try to explain the best i can, i was dx'ed 5 yrs ago, forgive my spelling, my main symptom was l'hermittes, they did a brain/cs mri and found lesions, i would then get leg cramps or pains when walking or standing too long, neuro gave me ultram, everytime i got a new symptom he upped the ultram, obviously i left him and found another who also dx'ed ms, but gave me nothing so as all know the search went on for a decent neuro thought i found she gave me neurontin, pamalr, and i cant remember the name, but a med that starts with a to helps with the tiredness, well after a blood check something was raising levels so she took me off all and nothing, so again to find one to help, well i felt hopeless, so i just ignored all for 2 years, hoping it would all go away and i would be fine, well 9 months ago my right hand started to go numb and tingly and hurt to be touched, i found a neuro and he said oh try pamalar again shaould help, but didnt in fact was another doc who just upped med, i was on 5 pamalar a day and getting no results but getting worse, i couldnt use my hand any more, i couldnt feel anything in it, so would drop stuff, couldnt even get function to write name, called nmss and they gave me the name of a neuro i went to her and she said i was so bad, needed to go into hosp asap and get a solumedrol drip for 5 days, then start on avonex. well finally i was able to feel my hand again, it was wonderful, but heres the problem, it only lasted a week, i am now starting to get it back but now i have it in my feet also, it feels like you have toilet paper stuck to bottom of feet and are walking on it, and tingling and numb and feels like swollen, but its not, i called doc to get med to help but i got a on call mine was on vacation, and she gave me topamax, but that seems to make it worse, now i am on avonex a month and a half now, i thought the reason i was getting stuck wuth a needle and having a fever from it was so i wouldnt have relapses, does this mean it isnt working? i am sorry this was so long, and thanks for reading it i am just so confused, could topamax really be making worse and is the avonex not doing a thing? any response would be greatly appreciated
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Postby art » Thu Jul 29, 2004 12:25 pm

You're basically asking for medical advice, and I think that best comes from an appropriate medical practitioner. Given your apparent bad luck with neuro's in the past, I suggest finding someone who specializes in MS and perferrably works at an MS clinic with other MS neuros. At least then you'll have some confidence that your situation is not new to them.

As to steroids and then Avonex, it's pretty standard practice to treat a relapse with a course of steroids and then get you on a disease modifying drug if you weren't already.

Avonex will not make symptoms go away, it's presumed benefit is the reduction in number and severity of relapses in the future, with a hope that this will have some impact on the accumulation of disability. So is your Avonex working? You won't know until you see if you continue to have additional relapses or disease progression in the future. And if you don't you still won't know if its working or not because your MS could remit without anything.

I have experienced what you did with steroids - it helped for a few weeks, but when the steroids were out of my system the symptoms came back. Steroids are like Advil - it might make your headache better while you're taking it, but if your headache continues after the Advil wears off you're head will ache.

Where do you live and are you able to travel to see a neurologist? There are quite a few large MS clinics in Boston, New York, DC, Atlanta, Cleveland, Dallas, San Francisco and other cities. If you can afford the time and expense, it is worth seeing a top-tier neuro in my opinion.
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Postby sunshine12 » Thu Jul 29, 2004 4:31 pm

actually i see a ms specialist now, but like i said when i tried to contact her about this relapse she is on vacation, i am not sure if it is ok, to write a doctors name on these threads so wont in case, but i am in ny. thank you for your reply and taking the time to read my long post :D
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Postby Cathy » Fri Aug 13, 2004 5:08 am

Sunshine, I was just going through the posts and saw yours and was wondering how you are doing now?
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Postby sunshine12 » Fri Aug 13, 2004 5:55 am

ohhhh thank you so much for asking :D although not sure if you really wanna hear answer lol.well feet still real numb, it has gone into my legs and butt, i have tried topamax, gabitril,and nothing i am on zanaflx now, but still nothing . for 5 years i had only little things here and there, this past year there hasnt been a week that i have been able to feel all my body parts. unfortunately i was just in hosp on solu drip 2 months ago so they said too soon to do again. so who knows how long i will have this for. again thank you so much for asking, it really means alot.
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numbness

Postby Cathy » Fri Aug 13, 2004 6:46 am

I am sorry to hear you are not feeling well. How long have you been on Avonex? When I was very ill with MS, I received monthly steroid pulses (1gm for 5 days or 1 gm for 3 day), the first year for 10 months in a row, the second 6 months. Maybe its time for you to switch to something besides avonex if you have been on it for a while and its no longer helping. I take copaxone as the betaseron did nothing, and I also take low dose naltrexone. Have you spoken to your Doc abouth any of this? I don't have numbness, no sensory symptoms, just muscle and movement, swallowing, speech issues when I dont feel well. Hope things get better for you soon.
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Postby sunshine12 » Fri Aug 13, 2004 7:05 am

well tomorrow is 2 months on the avonex, so hasnt been awhile doc said it takes 6 months to take affect? i havent confronted my doc on ldn because i havent run into anyone who has had these symtpoms and seen help. most of my complaints are sensory, i have some muscular. with the risk of sounding stupid, what is a steriod pulse? did you find it helped you?
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Postby Shayk » Fri Aug 13, 2004 7:07 pm

Sunshine

Hi! I haven't had steroid pulses yet so can't answer that question, but I have lots of the sensory symptoms of numbness and burning in my feet and left leg. I'm taking alpha lipoic acid for that (upon recommendation of my pharmacist) and it really seems to help me.

Plus, they're studying it for MS and you'll find an article on it here. It was found to be well tolerated at the 1200mg level in a Phase I Clinical trial and they plan to do a Phase II trial.

This sensory stuff is a nuisance and very distracting at times. I told my co-workers that my first accommodation was going to be allowed to go barefoot. :lol:

I do hope you find something that works and I'm sure someone knows about those steroid pulses. Do take care

Sharon
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Postby DawnsBrain » Sun Aug 15, 2004 10:27 am

sunshine
I am sorry to hear you are experiencing the nasties of this disease and I hope you find some relief very soon. I am on Rebif for three months now and was told the same as you were about the time frame in which in takes the med to start hopefully doing its thing.

Although I had a good MRI earlier in the month with no new lesions or lesion activity I still have the sensory issues to deal with. My feet vibrate and it is the strangest thing to deal with. I had made the agreement I would stay on Rebif for six to eight months b/c the side fx are so brutal for me. Since my MRI report was a good one the doc wants me to stay on it as long as possible so I guess that is what I will do unless my liver panel shows differently.

Just remember the inject meds are used to hopefully SLOW the progression of our disease and from all that I have read the meds do not treat our symptoms...that is what the oral meds do we are prescribed.

I had a flare in June but, was given oral steroids to control it and had good results from that so I can not speak of the steroid pulse you are inquiring about.

Hope you find some relief soon, sunshine!!!!!
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Postby sunshine12 » Sun Aug 15, 2004 12:18 pm

thank you for caring. well i havent had a mri since on the avonex, but i got one right before, and i had 4 new lesions, one was active. i am taking zanaflex now, but it doesnt seem to be doing a thing.
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pulses

Postby Cathy » Mon Aug 16, 2004 6:41 am

That just what they call it when you receive high dose solumedrol IV over 3-5 days-steriod pulses
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avonex

Postby Cathy » Mon Aug 16, 2004 6:46 am

One more thing-I think it is b*llsh*t they make you stay on a drug for six months while you continue to get worse or stay the same. They did the same with me and betaseron, and I would never allow that again. They tried to make me stay on neurotin, but after 3 months I just refused to continue it-it made me feel worse. By the way, the steriods have always helped me tremedously during an exacerbation. You need to either refuse to continue the avonex and tell him to switch you to copaxone (this because not an interferon and since avonex not working, amybe none of the interferons will) or go to someone else. I am keeping you in my prayers-this is a difficult situation I know.
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Postby sunshine12 » Mon Aug 16, 2004 8:21 am

i know it is a horrible situtaion, because my mind plays the what if game, i mean in the 5 yrs i've been dx'ed, i have never had 2 flares so close together and so bad, so part of me says i want to say screw it all and give up on all of it, but then the other part of me, say oh but what if i stop and it would of helped down the line?? so incase the disease wasnt horrible enough the docs and meds make ya feel even worse.
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flares

Postby Cathy » Mon Aug 16, 2004 9:03 am

They have not treated you with steroids for the flares? I know what you mean though, because I don't think anyone really knows if these drugs help us down the line or not, but I would be afraid to stop the copaxone, just in case.
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Postby sunshine12 » Mon Aug 16, 2004 9:19 am

yes i was treated a month and a half ago with solu drip and it seemed to help the flare i had then but now have this one and they said too soon to treat with drip again
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