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Old 09-27-2007, 12:45 PM   #1
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questions for MSJayhawk

"The problem with taking meds too soon is that any meds could mask MS symptoms and delay a diagnosis." This is a quote from your response to Janito (I belive thats who it was). I am a bit confused by some of the things you have written in earlier posts. Since I will be relying on my memory for some of my comments, please correct me when I am wrong. I seem to recall in an earlier post that you had MS symptoms over 25 yrs. ago. True? Were you dx'd at that time or not until you received the dx of PPMS? Then in other posts that I read I came to the conclusion that you did not treat for MS with any of the meds available but chose instead to do the 'natural' regime. Now I read more of your situation: needing the wheelchair , your helper dog, etc. I find that I am troubled by your advice to hold off on the medication. I respectfully disagree...I don't see how that benefited you. I am not trying to be mean, but it is my understanding that the sooner you start with the disease modifying meds the better chance one has of delaying the progression of this disease. I think that to advise otherwise does a disservice to someone who should begin treatment as soon as possible.
I don't mean this as a personal attack, just a different point of view.
Good luck to you, Mitch

 
Old 09-27-2007, 02:12 PM   #2
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Re: questions for MSJayhawk

Quote:
Originally Posted by mitch512u View Post
"The problem with taking meds too soon is that any meds could mask MS symptoms and delay a diagnosis."

I seem to recall in an earlier post that you had MS symptoms over 25 yrs. ago. True? Were you dx'd at that time or not until you received the dx of PPMS? Then in other posts that I read I came to the conclusion that you did not treat for MS with any of the meds available but chose instead to do the 'natural' regime. Now I read more of your situation: needing the wheelchair , your helper dog, etc. I find that I am troubled by your advice to hold off on the medication. I respectfully disagree...I don't see how that benefited you. , Mitch
Mitch, no offense taken. I had two bad years 1982-1984. My doctor's advice was that the steroids and the medications had a limited use period before the toxic build-up would require getting off the meds. I had my two bad years and then 18 years remission with a pretty normal life. In 2002 I came out of remission with a full-blown PPMS. PPMS is not treatable with any meds. My original MS hardly bothered me in comparison.

My PPMS required the assistance of a service dog and a powerchair. I feel that I made the right decision because I did not have to endure any side effects or any long term negatives from any meds. It benefited me from 1982-2002. From 2002-present nothing could have stopped the MS. Every MS patient will have to endure (most likely) a more progressive form of the disease later in their lives.

I have no regrets. God has richly blessed me.

 
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Old 09-27-2007, 05:34 PM   #3
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Re: questions for MSJayhawk

To interject my personal opinion - I will take whatever medicine might possibly give me benefit. I have had MS for at least 25 years and I really think taking meds to slow the progression has helped. I do use a wheelchair now when I have to go any distance but my limbs are strong, my eyesight is good and I do not have any cognitive difficulties. I want to stay as healthy as possible for the "just in case" day when they come up with a cure. I know this may seem naive but when I was diagnosed they didn't have ANY med for MS so progress is definitely being made.
I think that as soon as someone knows for sure they have MS, they should start one of the disease modifying drugs.
It is a personal choice but I think each person needs all the information so they can make their own educated choice,
Candy

 
Old 09-27-2007, 06:06 PM   #4
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lynxgal HB User
Re: questions for MSJayhawk

HI,


I have been reading the posts on this board for a few months now and I am touched by the support given by everyone on this board.

I have been experiencing weird symptoms for months now. I have not been diagnosed with MS but it is one of many possibilities.

MSJayhawk's approach to meds got me to thinking... My GP tried 2 different meds with me over the last 6 months. The first made me worse and the second did not really help with any of my symptoms except the brain fog. I also started getting new symptoms while on the meds. At this point I don't know if the meds had anything to do with the new symptoms or not. I am almost done coming off them soooo time will tell. At this point I personally don't want to try anything else until I know for sure what is going on with me.

I also agree that it is a matter of personal choice.
__________________
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dx Charcot-Marie-Tooth Disease October 2008. Fibromyalgia Jan 2010. Vit D Deficient Feb 2010. Osteopenia March 2010. Suspicion of Avascular Necrosis - Testing to be completed.

 
Old 09-27-2007, 06:15 PM   #5
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Re: questions for MSJayhawk

I was introduced to Dr. Swanks diet which served his patients well for many years without meds. It is my approach. The Dr. who treated me did not believe in the overmedicated society (he was Chinese American). He told me that your body will get through flare-ups naturally without meds. Many of his patients experienced remission naturally and some have been in remission for 35-40 years.

I have learned to walk (and roll) in faith. So far, I have not been disappointed in my Creator. I do know that if I were in a brain fog, I would be in no shape to be able to home school my sons let alone enjoy my activities.

I will always tell people it is their personal choice. I have no choice with PPMS, but I have a choice as to how I will live from here on!

 
Old 09-27-2007, 06:28 PM   #6
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lynxgal HB User
Re: questions for MSJayhawk

Just so there is no misunderstanding....I have reacted badly to many different meds in the past and I am not sure if the new symptoms may be a reaction or a coincidence at this point. My GP told me to come off the meds because he decided that his 2nd diagnosis was not the right one.

As I am highly sensative to meds...I may have to find alternate means to help with whatever is going on with me.

If anyone has a suggestion for a natural way to battle brain fog...I would be greatful to hear it.
__________________
~LG~
dx Charcot-Marie-Tooth Disease October 2008. Fibromyalgia Jan 2010. Vit D Deficient Feb 2010. Osteopenia March 2010. Suspicion of Avascular Necrosis - Testing to be completed.

Last edited by lynxgal; 09-27-2007 at 06:33 PM. Reason: added something

 
Old 09-27-2007, 07:37 PM   #7
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Re: questions for MSJayhawk

Brain fog for me comes when I do not get enough sleep or I need to cool down. Literally keeping my head cool has helped me a great deal. When my body is need of rest, I sleep as long as I need to.

 
Old 09-28-2007, 05:18 AM   #8
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Re: questions for MSJayhawk

I have stopped taking my Avonex. The depression was so bad, I was to the point of car keys in my hand, note written, ready to pull it in the garage and let it run. I feel 100 percent better and have just decided what will be, will be. I hate the thought of my entire being, dependent on drugs for this, that and the other thing. I've read lots about people on MS therapys and they still have relapses, more lesions, etc. I'm just not convinced enough to keep going with them. Ignorant? Maybe but I'm at a point in my life where I have no control over anything..........except what goes in my body and I'm just tired of it. I have to say, my brain fog isn't as bad and I rarely nap. That is leaps and bounds from what it was when I was in bed most of the day. We all have choices to make with MS and I just don't feel like being a guinea pig today

 
Old 09-28-2007, 05:33 AM   #9
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Re: questions for MSJayhawk

I too am a believer in doing what is right for you. I have a few friends who who haves auto immune disease and take every single pill the doctors suggest they take. There are side effects to each pill. They takes other pills to counteract the side effects of the meds the drs. tell them to take. I have spoken with them about all of this (mostly from a safety stand point) but they say they are going to take whatever needed so they don't have to deal with the disease. If it hurts...take a pain pill or two, if it feels funny, take a muscle relaxer or two....

My question to them... how do you know how you truly feel when you take so much medication from the time you get up (just incase it starts to hurt) till you fall asleep(after taking muscle relaxers and a sleeping pill)?

Again, not saying some don't need these things just to get through their day.
It's a completely personal decision.

Last edited by tuckersmom; 09-28-2007 at 05:35 AM.

 
Old 10-01-2007, 11:23 AM   #10
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Re: questions for MSJayhawk

Hi everyone, I have been reading this board since 2005, I have posted but only a few times. The reason for that is I never found anyone's problems that related to what I was dealing with. I have actually known I had MS for the pass 32 yrs. but please let me say this . Even though I new of the MS it never present...meaning 'NO SYMPTOMS OF ANY KIND WERE EVER PRESENT' My onset of MS I'm told was brought on when I lost my mom to cancer in 1975.

I'm guessing that word Stress is certainly a bad word and can certainly trigger MS as long as you have the gene the possibilities are greater and will cause it to rear its ugly head at some point if something should 'irritate and trigger' it. With my mom's passing had caused me a great deal of stress and caused my body to go numb from my feet to just under my breast<> for about 5/6 weeks and once it subsided it never returned ever again. With this numbness I never lost feeling, but it certainly was a numb feeling. Would sensation of numbness cause you to lose feeling?.

A little history would help and maybe a timeline so it would be a little more understood ....The neuro at that time referred to the numbness as a stress related problem, knowing what I was dealing with my mom.. (1975).

It wasn't until 1983 that I was I told it was a possibility that the numbness was likely the onset of MS for me, so it might not have been a stress problem at all, but stress had certainly trigger the MS for me. Test were ran that said I had a degenerative disc. I guess degenerative means MS. But technology then isn't what it is today. I would think that a degenerative disc would have caused me backaches right? as far as I new I never had a back problem not even to this day.. I would think that a back problem would have certainly affected any sport activity...but nothing ever did.


I have a brother and sister who were both diagnosed at the age of 35 with chronic progressive MS....and once it started it came on very rapidly for them both. My siblings and I are all two yrs apart in age so of course, I thought oh crap! 'I'M NEXT'. But my 35th yr came and went without incident..and to this date and time I still don't deal with any kind of MS symptoms...that a doctor would call characteristic of MS, like what many of the posts I read on this board. My doctor always tells me I'm a health person in spite of the MS.

Let me squeeze this point in.... Actually "my onset was 5 yrs prior to my siblings diagnoses of PPMS in (1980). I guess you can say I have been totally the opposite of what they dealt with...and yet my numbness occurred 5 years before their diagnose of PPMS. So in other words....I guess you can say I was effected with my onset before they were and yet their both progressed very quickly



MSJayhawk, So I can certainly understand that you went into remission for 18 years, and had a pretty normal life. I haven't had any symptoms like the numbness I experienced in 1975, and I still wasn't taking any kind of a MS modifying drug either and I was living a very normal life. Besides I never had any symptoms to speak of since my onset in 75'.

I felt why put an alien substance in my body if I wasn't having any problems. So that goes to show us all just how different MS can be for each individual. Who know if I was taking a MS modifying drug would things be different for me now hummmmmmmmmmmm.... 'doubt it'. My opinion, if it wasn't for the auto accident I seriously think I would be just fine. I think the accident and everything that followed did me much harm.

Obvious the MS was lurking in my body....but unbeknown to me. As far as I was concerned I was a very healthy individual...so I just put the MS out of my mind.....why not if there wasn't anything to suggest otherwise. So I just enjoyed my life and continued my hiking, biking, tennis, women's softball...I even dubbled in lightweights, enough to kept toned and I enjoyed every minute of every activity.....now I saddly miss it all very much. Guys I'm telling you this just to establish, that MS was never a problem for me 'NOTHING" zero, notta, zilich.

Jayhawk...I only started taking copaxone, in January 2004 myself. and that was because I had gallbladder surgery and never did I have an inkling something was wrong...nope! didn't have a clue until fever woke me at 3:00 am .... my hubby called 911, I had a temp of 103º...I might not have a heat related problem with having MS but with a temp like that ...'.it was clearly a wipe-out' for me'. Never in my life did I ever feel like that. So I can only imagine how some not all feel with MS dealing with the heat in the summer months .

Back to the ER, Without any symptoms other then the high fever...I had many tests done since they couldn't fine the cause of my fever...they did a spinal tap...neg...they even considered meningitics not...they new it was somekind of infection but what???and why? hum!...Long story short it took them 5 days, they got my temp ldown but it still was present just not at 103º any longer. And finally during one of many exmaminations as the doctor pressed on my stomach area which caused me pain, and that was done early on also hummmm! that was strange. The doctor said we finally found the culipit it was decovered that it was my gallbadder all along causing the fever. Finally, once surgery was set for the following day, SURGERY PUT AN END TO THE FEVER and the fever was gone...yippy!! so it was well after my surgery that my neuro suggested I start taking copaxone. I was still hesitating to do any MS drug...again I still didn't have any MS symptoms to speak of plus they ran enough of test. So my question to my doctor was 'WHY' if I don't feel any different minus the absentence of a gallbladder, lol. But he (neuro) felt it was about time I finally started with something since year prior I hadn't taken anything. When I ask him why start if all the test MRI, x-rays, sonogram, etc show nothing has changed. His answer was a simple ( sooner or later that's just the way it goes and you will be better off later on)...So who ever I should be quoting from the board saying, (quote)<> ((eventually MS will endure))... <>Jay, I think you might have said that .Let's hope a more progressive form doesn't apply to all.

Jayhawk, I also tool around in a power chair as well ever since I had my piriformis muscle injected in 1998, which by the way was caused by a chiropractic adjustment that's another story but that's how that buttocks left leg pain all started for me.. Oh...let me say that after 10 long years of suffering 1989 to 1998 with that very pain the injections through pain management put a stop to it. So I guess they were always trying to telling me it was MS...but I felt otherwise. All along they referred to it as sciatic leg pain....I always felt it was caused by the chiropractors adjustment. It was the internet that proved that the piriformis muscle and minic symptoms of sciatica.

They said that stress is very much a strong component (for folks with MS) with all the stress I've been through since my auto-accident in 1988, with all the bull they all' put me through drs and lawyers alike) my stress level should have gone through the roof....because they all put me through a tremendous amount of "STRESS" and that alone should have brought on a multiple amount of MS symptoms and it 'DID NOT' lucky I guess.

They say that stress is certainly a destructive ingredient when you have MS. fortunately it has never been an enemy for me...thank god.....with all I been through with doctor's and lawyers. IT was "A BAD BAD EXPERIENCE FOR ME".

Moore170, your right, as soon as a person knows they have a dx's of MS they should start taking a modifying MS drug to slow the progression down. I agree that would be the smart thing to do but I'm betting that only people that do deal with MS symptoms would have reason to move on it. In my case there weren't any symptoms to be concerned about, and that would be my reason for not starting early on with an MS drug.. With know problems why would I want to put an alien substance in my body unless I had a reason to. But I guess if I new then what I know now I would have...but once again I had no sx , besides back in the 70's there weren't the MS drugs we have today.

I think I said enough any feedback is welcome.and thanks everyone for allowing me to vent I hope you all had a great weekend.

Sorry this was long and I made it as short as possible lol thank for letting me vent....maybe I typed more then anyone really wanted to know
Any questions just ask...Ciao !

 
Old 10-02-2007, 01:39 AM   #11
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parisiancat HB User
Re: questions for MSJayhawk

Hey,

Great discussion!

I think that it is absolutely a personal choice. But, as others have said, I think it's really important to have and understand all the information (on drugs, natural thearpies) so to make an informed choice.

There is so much not known about MS. When someone have been on medication and improves we never really know that it's the medication - maybe they were under less stress, maybe had a more positive attitude, maybe it was the weather, maybe the diesease just wasn't going to progress anyway. Similarly, someone taking the natural approach, has some sucess, we never really know for sure that was the reason - maybe they were under less stress, had a more positive attitude etc etc.

And everyone is different. Everyone's MS is different. It's not a huge leap to imagine that different treatments will affect different people in different ways.

Cat

PS: I get brainfog when I'm tired, experiencing a flare-up of symptoms and when I eat dairy. So I avoid dairy. And otherwise, when I have brain fog, I find that eating fish (just plain, no sauces etc) helps clear it (not completely, but a bit). That is just ME. And maybe the improvement is all in my head. But who cares, it makes me feel better!

 
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