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690549 tn?1288882721

Anybody else chosen to not have MS treatment?

I was given a probable diagnosis in 1973, long before there were treatments available to halt the progression of MS. When I went to a new neuro about 1990, I said I was comfortable not choosing an injectible since I seemed to be doing pretty well without one, and we didn't want to "rock the boat" since even back then they knew or suspected that interferon could sometimes cause havoc where there was none before. I have continued with medicines like baclofen, neurontin, cylert and others, but never one of the 6-7 bigger name treaments they have for MS--and until recently, not even oral prednizone. I didn'tever grin, but I sure did bear it---for many many years, whether the problem was weakness, numbness or pain. I've just turned 60 and had an entire winter of bronchitis which has turned things topsy-turvy. Infection/inflammation sure does a job on MS! I had my first really major exacerbation in December which seriously effected my ability to walk and even stand more than five minutes. I've taken many weeks of oral steroids for the bronchitis (and still have it) but don't have much recourse now without being on a drug. There's just nothing appropriate for me at this point. Has anyone else taken this route and now find themselves in the same dilemnia? Maybe I'll continue to be OK when I'm off these steroids--maybe not, the what will I do? IV steroids, I guess, when I have to resort to something. Cheers! Jane
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690549 tn?1288882721
So many neuros---so many ideas--thank heavens, now--so many treatments!

Nice to see you Rani--I knew you best when you were doubling up on the avonex. I do think we have to maintain our comfort and know when to change approaches. But I do hope we all keep some neuro so we're in a position to make a move when the time is right. Especially now with gene studies and stem call research, there just may be big development a comin'. We can pray!

Please remember I sort of slid into no treatments because I'd had MS so many years before they became available---and I was doing OK with sensory symptoms that I was tolerating. They always said we'd save the steroids for the "big stuff" if and when it came so it would be more effective. Well, after 36 years of MS, and four months of bronchitis that won't leave, I'm using the effectiveness of steroids for it! What an irony!

I definitely advocate disease modifying drugs! I guess I do think it's only sensible to wait a few months--maybe even a year to see what happens on its own, and at any time begn treatment if things do start happening. There are so many success stories to back up this approach. I think some of it,too, is getting to know our own bodies as well as our tolerance levels. We need to try and find a doctor who we're comfortable with, and then make decisions we're both comfortabke with together. MS is nothing to make light of, for sure! I have the utmost respect for it as a disease process, and I intend to be very careful. Jane
Helpful - 0
798671 tn?1238153888
i think you made the right choice!!! i myself am 26 and im starting to have probs. they started jan. "08" . The doctors say it is more then likely ms but no def diag. mri's are clear and lp is neg. my doc is Dr. Stanley Krolczyk at the USF in Tampa. anyways my grandmother died in jan. 2000 of ms. My mom (her daughter) cared for her at our house for the last 5 years of her life, so she could die at home with family instead of in a nursing home alone. she was 63 when she died and lived a very happy and full life WITHOUT the new meds and injections and all the other ****. She was old fashion and would not change for anyone.(Thank god) she used to say "they didn't need all these pills back in my day"lol. On the other hand my sister (REST HER SOLE) was diagnoses with ms on 10-17-1998 she was days away from being 18(10-10-1980) She got on all the new meds and injections. did everything the docs told her and died one on the most miserable and painful deaths ive ever seen on 5-9-2006. So I think you made the right decision, and if i do have ms like they say i will be making the same dicision that you have.There is no way i want to go out the way my sis did. I dont mean to scare anyone either, Im just being honest.
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Avatar universal
My name is Rani and I followed Jane to this forum.  My MS was dx;d on 1/10/96 and as soon as I had a second relapse (verifying R/R), she started me on the newly-released Avonex.  I took it for 4.5 and years and during that time, I progressed from mobility to cane to walker to wheelchair.  He had suggested I get a motorized chair because (this is a verbatim quote, I wrote it down) "You'll never stand, let alone walk, again."  When Copaxone came out, next neuro didn't want to switch me to it.  We tried doubling up the Avonex, 2x a week, to no benefit. He ran me through 2 rounds of IV prednisone (no benefit) and then we tried iViG (IV gamma globulin), also to no benefit.  He wanted me to try Novantrone, but after reading up on it, I said No. I asked if he had any other patients on it, and he said he had broached 11 patients about it, but only one agreed to it.  She had no side effects, no hair falling out.  But also no benefit to her MS.  My mother had her first heart attack and bypass surgery at age 60 and her second ten years later.  My father died from complications of a stroke.  My ticker is in great shape and I am unwilling to risk it with a cancer chemo drug that has the same 65% chance of maybe slowing my progression.  He thought I was chickening and I said if he would take it alongside me, I'd do it.  Ha ha!   I finally said "Enough" and quit the heavy drugs.  AND that neuro.  I take neurontin, oxybutynin (for incontinence), tizanidine (spasticity) and tramadol.  

I am pursuing alternative modalities and I can walk 25-28' with a walker now.  I have lots of energy and despite hand-tremors, I am a portrait artist and a tutor for the Literacy Council.  

CRAB drugs and other drugs are not for me.

Rani
age 53
Central Florida
Helpful - 0
690549 tn?1288882721
Thank you, Ess, Sll and my other new friends!  I know my first job is to recover from the exacerbation--the warmth is definitely coming here in southern Indiana.  I'm incurably optimistic, but I do believe that little by little when I get rid of all infecton (I also have a dime size spot of MRSA on my shin), and I've just developed lymphedema, I can build up my strength little ny little again. interstingly from first taking it a couple months ago, provigil helps my stamina and allows me to walk a bit better--and doesn't seem to have any effect on my fatigue. Somehow my primary was able to get my insurance to OK two pills a day, too!

I didn't mean to indicate I was beating myself up about decisions I made many years ago. I'm not, and if anything, I think I have saved a bunch of money, some aches and pains which I had anyway, and a bit of trouble. It's just my situation now begs the question of what next? Heaven knows after 36 yars of uncertainty, I can take it easy and wait and see what the future brings. Everything is cool; I'm just glad to be in an intelligent forum with inquiring people. I plan to look into learning more about what a MRI for MS after 36 years might mean. It is undeniable that the progressive part of the disease is here---I just plan to be as ready as I can. Cheers and hugs! Jane
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Avatar universal
Hi, and another welcome from me.

On this forum we have a low tolerance for the word 'benign.' Hah. What you've been through sounds far from benign to me. We've heard about neuros who use that term just because the patient can still walk, even though his or her quality of life has been severely affected. All I can say to that is that these neuros should spend just one week in the shoes of some of us here, and see how benign they think it is then.

So we're in agreement with neuros who insist that 'benign' should be applied only after the fact, meaning after death or at the end of life. Just based on You Never Know. Your life now is is most difficult because of various complications, but your life for the past 35 years has hardly been normal either.

I wish I could help regarding whether you should go on a DMD. I don't see how it could hurt, providing the side effects are manageable for you, which they are for the vast majority. I do think that you should do everything you can to treat your symptoms. If you haven't been in physical therapy, that's a good place to start. The best thing I know for bronchitis is warm sunshine. Spring is just about here. When the days are nice, spend as much time as you can resting outside. If you can afford a trip to Florida or someplace similar, that would be great too. Bronchitis can take forever to get over, as I well know. The fatigue can be much like MS fatigue. So pamper yourself as much as you can.

Meanwhile, get to know us here. We're a good group, if I do say so myself. Have you checked out our Health Pages? I think they're the best.

Cheers to you!

ess
Helpful - 0
690549 tn?1288882721
Mand: please don't worry--over the years I have just heard a few anecdotal stories about people who did not do well on MS treatments. The introduction of interferon into their bodies just seemed to stir up trouble--they could have had an allergy, but in some way were not disposed to the treatment--it's bound to happen with anything for some.


Heather and Quix: thank you for your interest and sharing! Yes, my MS has been mild and sensory up until recently. But I can't forget that over the many years I have gone from sometimes walking with a limp to not being able to go into even one store that has a cart now--so sensory doesn't speak to everything. I'm interested in the scalp spasms as that has been an additional problem of mine at times for many years. I recently said I couldn't stand them anymore then haven't has any for six months!  I also have ear and jaw involvement of a TN nature as well as periodiodically many "spots" from tonsils to left nostril to eyes and forhead which range from sore to very painful. I am such a complicated animal!

My October 2008 MRI (by request--it had been either 4 or 11 years) was the first report I'd had my hands on in awhile. I do have my baseline one from 1988 which is kind of fun. This latest was only "explained" by my neuro's office as "no new lesions." What sort of surprised me (this was before the Dec exacerbation) was to see the word "severe" several times. I might have anticipated that after 36 years, but I was so used to being called "Benign"--which I did think was a crock.

"There are severe confluent periventricular white matter plaques compatible with MS. Severe callosal-septal irregularity is present. Small plaques involve the right aspect of pons and left middle cerbellar peduncle." {Peduncle???? I didn't know I had a peduncle!!}
No enhancing plaques are present--guess that means contrast showed no new ones. "The brain overall shows moderate to severe generalized cerebral and cerebellar atrophy for age." Then it spoke of the major cranial vessels show normal flow-voids, and the paranasal sinuses are clear. I suspect the neuro had targeted the cranial vessels since I'd had the probelms which seemed to be from cranial nerves. Well, there I am in black and white. I'd appreciate anything you've got, Team. I'm going to lie down. Cheers! Jane
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198419 tn?1360242356
Hi Jane,

Adding on a belated welcome! I look foward to having you here with us.

See you back real soon!

-Shell
Helpful - 0
195469 tn?1388322888
I am anxious to hear about your recent MRI.  I think that will tell us all, alot about the severity of your MS.  I just wanted to know if you can say that you have ANY remissions, where the symptoms are less for a time, before they start up again.  I am hoping, maybe against all hope, that you will fit the category of being able to get some benefit from a DMD.

Big Forum Hugs dearheart,
Heather
Helpful - 0
690549 tn?1288882721
Well, maybe I did close my eyes for a minute---but I sure don't see how I merged entries and generally screwed things up so much! Sorry! Anyway--to continue the post, I stayed much too long with my old neuro--15 to 18 years rather than fire her and try someone else. She insisted I was Benign even though I had typical and more than typical MS issues every day for the 36 years. I have had problems with bowel incintinence for twenty yers! But not urine which only made her challenge me hat she'd never seen that. I responded that that, of course, meant nothing. Then some time later I had a test showing I didn't have feeling within my colon.

Yes, I could walk, but not well or far--and definitely progressively worse over the years; but she did not see this and I think was just hard-headed. Once she marveled that I had so many SX's when she felt most people had just 8-9. Mine ranged over the years from fullbody numbness to halfbody numbness to skin sensitivities, itching, bone aching, slurred speech in cold and mass weakness in heat. Pain was present in multiple ways daily. I seem to have a touch of TN--but thank heavens, just a touch.

In any case, I made the switch to a new neuro just recenly--I've been once. So I have a lot to discover from this fresh perspective. He made it clear that he didn't think a change to a DMD would be appropriate, and I was not in the least surprised. He felt I had entered secondary progressive status just by the fact I'd had MS so long--which I had felt before as well. Oddly, he didn't understand one whit that after 36 years I really wanted to be able to say what kind of MS I had. lol He didn't know how many things I fill out online and feel sort of "displaced."

I have more to comment on--things all you nice people said, as well as the report from a recent MRI which rather suprised me by using the word "severe" several times--but my dear husband is waiting to get on the computer so I will wait until another time. I look forward to communicating with you intelligent and caring folks. Our MS does bring us some good things! Cheers until then! Jane in Indiana
Helpful - 0
690549 tn?1288882721
Wow--Thanks to everyone for commenting and caring about a Newbie to this forum. You all are indeed a very interesting bunch! For ten years I moderated MS chats on aol and became well aquainted with some of our maladies. I'd regularly advise people to fire their neuros if they were unhappy, yet I didn't take that advice myself. I was with a woman who I felt was brilliant, but had a weird and very limited approach. For example she allowed you to mention only things that were new to your situation--nf by gum, I managed to find  Anybody else chosen to not have MS treatment?
by jed9999


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jed9999
Female, 60 years
Evansville - IN
Member since Nov 2008
Mood: jed9999 is ...happy
  



, Mar 16, 2009 03:43AM
Tags: no injectible, infection, steroids
I was given a probable diagnosis in 1973, long before there were treatments available to halt the progression of MS. When I went to a new neuro about 1990, I said I was comfortable not choosing an injectible since I seemed to be doing pretty well without one, and we didn't want to "rock the boat" since even back then they knew or suspected that interferon could sometimes cause havoc where there was none before. I have continued with medicines like baclofen, neurontin, cylert and others, but never one of the 6-7 bigger name treaments they have for MS--and until recently, not even oral prednizone. I didn'tever grin, but I sure did bear it---for many many years, whether the problem was weakness, numbness or pain. I've just turned 60 and had an entire winter of bronchitis which has turned things topsy-turvy. Infection/inflammation sure does a job on MS! I had my first really major exacerbation in December which seriously effected my ability to walk and even stand more than five minutes. I've taken many weeks of oral steroids for the bronchitis (and still have it) but don't have much recourse now without being on a drug. There's just nothing appropriate for me at this point. Has anyone else taken this route and now find themselves in the same dilemnia? Maybe I'll continue to be OK when I'm off these steroids--maybe not, the what will I do? IV steroids, I guess, when I have to resort to something. Cheers! Jane
Helpful - 0
147426 tn?1317265632
Heather makes a great point...one that I didn't even get around to.  What do you do now, besides not beating yourself up.  

Well, if your doctors recommend a med, and if you trust your doctors, I would go on one now.  Clearly the MonSter is rearing its head, and it is time to use whatever weapons we have against it.

Thank you, Heather for your kind words.

Quix
Helpful - 0
195469 tn?1388322888
Why couldn't the MS just have kept quiet?  I am so sorry that you seem to be having obvious flare ups and trouble.  If I read your post right, you have suffered from a lot of pain from 1973 until now.  Is this right?

I have been dx with MS for 13 years.  I had no injectable medication for the first five years.  My lesions weren't changing so they said that the MS dix was in doubt.  Long story for another day.  

I was on Avonex for three years and just this past year, I started Copaxone.  It's a realtively easy treatment, although my age being 55, seems to now show a slight progression by such lingering symptoms and few clear remissions.

If your doctor's still think you have a true relapsing/remitting course, of course I would still recommend one of the DMD's.  Even this late in the game.  The DMD's are taken to give the body something other than the Central Nervous System to attack.  So if you still fall into the category, I would at least give them a try.

I would follow Quix's advice.  She is right on in her evaluation, as usual.  I literally have to say that I trust her with my life.  That too is another story for another day.  She has saved the live of more than one person on this forum, so I do trust her medical background and knowledge.

We hope to learn more about you.  I want to know if the DMD's will help you in any way, this late in your diagnosis.  Wouldn't that be great to slow any progression from the MS?

Take care of yourself and all the best wishes,
Heather

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147426 tn?1317265632
Hi, Jane, what an interesting story your bring to us to consider.  I have a couple comments - people here will tell you I ALWAYS have something to say about things.  I am the local MD in these parts and I try to give everyone some understanding of what is going on with their particular situation.

The first is that I am sorry that you are suffering so much this year.  That is really awful.  The repeated infections do rev up the immune system, often triggering severe relapses in someone whose relapses were usually few and mild.

The second thing is a subtle point that I don't think a lot of people understand.  By the time you had access to a Disease Modifying Drug you had already had the disease for almost 20 years.  We know now that those meds work best as early as possible in the disease course.  This means within the first 5 years or so.  Do they help 20 years into the disease?  Probably, but not nearly as much.  So, was your decision not to use a DMD then the reason for your troubles now?  I would say likely not, though of course no one could no that for sure.

It is also becoming clear that this disease has it's own rate of progression.  You are now 35 years into it and real progression and the appearance of real disability is to be expected in the majority of people.  Again, I'm not at all sure that a decision made 15 years ago is to blame.  We know that the DMDs do NOT stop MS in its tracks.  They don't even help everyone.

So, given those two facts, I don't think there is anything to beat yourself up over.

Now, yes, in the very early days of using Interferon-beta-1 a&b, it was not known what bad effects might come out of their use.  We learned pretty early about occasional drops in white cell counts.  Those return to normal by stopping the meds.  We know that occasionally we can see some liver enzyme elevation.  We know about the common "flu-like" side effects that generally improve with time.  But, there has been nothing since the beginning that we have discovered actually makes things worse than they were.

There were always concerns that we might see other autoimmune diseases caused by the interferons or that we might see an increase in cancers unleashed by them.  This has not happened.  Yes, with the high doses of Interferon-"alpha" that have been used to treat Melanoma and Hepatitis C we have seen other bigtime health risks, but not with the form of Interferon we use.  People often misunderstand that the Interferons and Copaxone do NOT act like cancer chemo agents.  All of us hear about the drugs used for Rheumatoid Arthritis and Psoriasis that warn of fatal infections and lymphoma and such.  Those drugs have nothing to do with and are nothing like the meds for MS - until you get to the 2nd line drugs like Tysabri and Novantrone.

So, the Interferons (which, afterall are natural compounds produced by our own bodies) have shown themselves to be really quite safe.

Jane - Do your doctors think that you are entering a phase of Secondary Progressive now?  Or are they waiting to see what happens once the infections pass and you move through this last big exacerbation?

Again - I don't think you doomed yourself to this by your decision in the early 90's.  It might be different if your disease had just begun and you decided against them.  It sounds to me like you had a pretty mild - or at least tolerable - course up until this year.  Then all h*ll broke loose.  That's why we rant so hard against anyone relying "now" that their MS will always remain mild.

Welcome again.  I hope lots of people stop by.

Quix, MD
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335728 tn?1331414412
Hello and welcome to the MS Forum!  I am sitting here having deja-vu and it is really strange since your situation is the first I have heard so similar to mine!

I was diagnosed in 1993 after presenting with grand mal seizures for which I was and still am treated with Tegretol.  I have been seizure free for years and until 2006 I was pretty much symptom free with relation to the MS.  Since then I have been diagnosed with Paratrigeminal Neuralgia and was treated with Neurontin, Topamax, Tegretol and Lyrica all of which didn't help much other than the Tegretol which I continue to take for the pain.  I have had a lot of trouble with Neurologists and poor care or little to no care and I just recently was seen by a Neuro that seems to want to take me seriously.  He explained to me that since I have no "new" symptoms, it wouldn't make sense to him to start me on a disease modifying drug (DMD) unless I presented with "new" symptoms so here I am!  I am taking Tegretol for the head pain, Elavil for the leg pain, Oxycodone for when the pain is unbearable and I will not be seeing the Neuro until the fall.  I recently had an IV steroid treatment (my 3rd) and this time it really didn't help with the trigeminal neuralgia at all so I don't think I have much else to choose from to be honest with you.

I also have to mention that the IV steroids can really wreak havoc with your body as well...I ended up with a sinus infection, a bronchial infection, thrush and then a yeast infection from the antibiotics for the infections!  Not a lot of fun altogether!  

Are you currently under the care of a neurologist and if so what is his/her opinion on the subject of DMD's?  Perhaps a second opinion is a good idea in a case such as yours because we do seem to be few and far between and another neuro may have dealt with this situation before?  

I am very interested in following the results you have regarding the DMD's and would appreciate it if you would stay in touch with us!  We are a good group of people here and can offer a lot of information to you if you just ask the questions.  I, for one, am looking forward to getting to know you better in the future!

Lots of Hugs,
Rena
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Avatar universal
Thank you for the interesting post, however it has worried me a bit - you say that "interferon could sometimes cause havoc where there was none before". I didn't know about this and would appreciate more info.

Many thanks
Mand
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