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Old 11-21-2012, 05:17 PM   #1
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DMD, No DMD, and Symptoms

So i have been looking at the different dmd's and their side-effects, personal testimonials on here, etc. I have also been reading about those who do not do meds at all. I guess the first thing that popped out is its a crap shoot either way and its my decision.

My question: If you DO NOT do the meds, what do you do when you have symptoms? Since main symptom onset in January, they have continually got worse and many additional ones have been added. I had one month where almost everything went away and the heavy fatigue released. I "almost" felt totally back to normal.

If I do not take dmd's is there anything to combat this fatigue? It makes me feel absolutely lousy, worthless for getting anything accomplished. I can deal with numb limbs and finding that redline and not crossing it, now that I know what all this side pain is, and the muscle spasms, I can deal with those. But this fatigue and feeling like it takes everything in me to get up and take a shower, to then feel the need to go back to bed is ridiculous and I can't seem to get thru that... any suggestions. Do dmd's help with that too or something else? or do dmd's just try to keep you from getting into a relapse to begin with?

thanks!

 
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Old 11-21-2012, 07:50 PM   #2
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Re: DMD, No DMD, and Symptoms

I am so glad you posted this as i am awaiting my first appointment with ms specialist in dec an if i am dx for sure i would like to know also the benefits of dmd or not. Have had a multitude of symptoms this past year. I get some breaks an as you i can live with the pain. I have noticed i get horrible dizzy spells when its hot or humid or even have an extra blanket on. Also anxiety that was coming at odd times even before ms was mentioned. I have always been sensitive to meds allergic to aspirin so im kinda afraid of.the meds. So it would be great to get some info on how diffrent poeple handle an make there decisions.thanks for starting this thread. Tami

 
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Old 11-21-2012, 11:56 PM   #3
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Re: DMD, No DMD, and Symptoms

Hi,

Late as it is, I could not sleep as I zonked out for several hours earlier today.

DMD's DO NOT ELIMINATE SYMPTOMS. Even with DMD's you will still experience symptoms. The DMD's are supposed to slow the progress of the MS, but it is not always successful. You can be on DMDs and still progress.

If you want to battle symptoms alone, there are meds for that. I have found that avoiding the avoidable triggers is the best for me. When you cannot avoid a trigger, rest and recover. Stretch every day and stay well hydrated helps with muscles.
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Old 11-21-2012, 11:59 PM   #4
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Re: DMD, No DMD, and Symptoms

Quote:
Originally Posted by MYSISSYGIRLS View Post
I have noticed i get horrible dizzy spells when its hot or humid or even have an extra blanket on.
I think you can count on this as a trigger for you. When I sleep at night I have a sheet and 2 different blankets. I will shed and add layers as needed. Heat and humidity are major triggers for many MSers.
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Old 11-22-2012, 08:36 AM   #5
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Re: DMD, No DMD, and Symptoms

As a person who has been on several different DMDs I would like to share my story.
I was put on Copazone immediately upon my dx. I was allergic to it and within 3 shots was told "no more". I stopped breathing twice...

I was then switched to Rebif. If you look at my old posts, you will see that I was a HUGE fan of Rebif for almost 5 years. It kept me stable. Did I still get smptoms? Yes. I even experienced Optical Neuritis twice in the first six months on Rebif and thought for sure they would take me off of it...it was then, that I learned it really does take 6 months to build up in your blood stream.

Rebif was tough in the second, third and fourth month. I did get the flu like symptoms. I felt horrible 2 hours after my shot and laid on the bathroom floor many times wishing I was dead. BUT it only lasts for about 8 hours post injection and only on shot nights (3 times a week). I managed to stay in school, work fulltime and raise my 3 kids without ever missing a day......then one day, the symtoms stopped. No more nauseau and flu like symtoms. It took about 30 shots to get to that point. (remember, its 12 shots a moth).

I stayed on Rebif almost 5 years and had MRIs every 6 months....they were stable and it was "working" to keep the disease from progressing.

Then one day, I saw a spot on my arm, strange...but it looked like melanoma. 3 others showed up on my back....I saw a Dermatolgost who informed me these needed to be surgically removed....calling my Neuro, he informed me that its a very rare side effect of any interferon. And he ordered blood wok....it was determined that I had developed antibodies to the Interferon and it was actually making me sick....over that prior year, I had been sick quite often. Infections, fevers, feeling like my head wasnt connected to my body. I was finishing my second bachelors degree at this point, taking my first management job, and people were telling me they were seeing personality changes. I didnt like myself and I constantly felt cognitively foggy...I stopped the Rebif immediately and went through a total of 7 skin surgeries..within 6 months, I felt like myself again.

I started researching meds. I discovered LDN. Low dose Naltrexone is used in Europe and Australia as a DMD for MS...but in the US, its not approved, even though the drug is used for other reasons and FDA approved. I read everything I could get my hands on and eventually convinced my doctor to let me try it. You have to get it compounded by a specialty pharmacy and its very inexpensive. (25$ a month). It helped with ALL of my symtoms. My bladdrer urgency, my sleeplessness...and especially my fatigure. I have never felt better in my entire life! However, 10 months later, I had another MRI and discovered that I have 20 new lesions....

WIth this, my doctor insisted that I try another DMD. I am JC Virus positive, the idea of trying Tysabri was terrifying, but he said "lets try it. No one has ever gotten PML with less than a year of infusions" by that time, Gilenya will be available....so I tried Tysabri.

first infusion, no problem. Second infusion, a rash and itching all over my body, which was treated with benedryl also infused in the veins....third infusion, I spent 2 days in the hospital as I stopped breathing. No more Tysabri. Im back to only taking LDN.

He then said they reformulated Copaxone. Lets try it again. One shot and I was in the ER for 8 hours....not able to breathe. Then came Gilenya, One pill and I broke out in a rash all over my body and said "NO WAY". Im not going to put my body through more allergic reactions.

So, fast forward...ive had one heck of a year...and through it all I finished my MBA, started my doctoral (post graduate program) and also travel for my job as a Regional Manager....I have over 70 lesions and I absolutely feel terrific. To see me, you would not know I have MS......but I still have numbness and tingling in my hands and fingers. My feet go numb now and then. I have some residual damage to my eye from ON- but I fake it with the best of them! I do not complain. I do not let a bad day stop me. I go to the gym 4 days a week for 45 minutes, which helps significantly with balance and stretching- and keeps me feeling good....I also try to eat right.

Ive now had MS for about 8 years (at least Ive been dx that long). Today is thanksgiving and my birthday! Im grateful for the fact that im still mobil and independent. Im grateful that im able to pass along my experience to others.

So the big question is: To do DMDs or not?

Yes. Try them. You wont know unless you try...and its insurance. There is significant proof that taking anything which helps slow down the progression of the disease is worthwhile. There are 3 new drugs in the pipleine to be released in 2013. Will I try them? yes. BG12 is looking positive. The drug is safe, been used for years for Psoriasis...and it appears to be slowing down progession in radiographical tests (MRIs) and in symtoms. I have no doubt that Ill try it when its available.

And, in the meantime, I do what I can to not let this disease control me, but I control the disease! BUT , anyone who is recently dx, should consider trying anything they can not to let this disease progress. I am living proof that its not the number of lesions which equates progression, but Im the excetion to the rule. My case is being studied all over the country by neurologists trying to figure out how my brain stem can be so damaged, but my brain is actually fine....why can I walk? Breathe? Think so clearly? No one has an expanation...but for this and more- I am grateful.

I wish all of you newbies better luck than I have had with some of the DMDs, but I would never tell you not to try them. It is a very personal choice, but doing nothing, when you have options, seems like a bad idea to me.

Hugs and happy thanksgiving to all of you
Nikki
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Old 11-22-2012, 10:13 AM   #6
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Re: DMD, No DMD, and Symptoms

HAPPY BIRTHDAY, Nikki!!!

 
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Old 11-22-2012, 06:40 PM   #7
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Re: DMD, No DMD, and Symptoms

Thank you for all the info! I have read thru some of your older posts and glad to have the updated version. I am trying to see if my tried and true "let it run its course" such as I have lived with sinus infections, colds, fevers, and past minor illness would equate to this. I am not sure for me. This is not "just a cold".

But it appears, just as with other over the counter meds, the side effects may outweigh the benefit-for me. The other side is the counter-intuitive notion that I can "do nothing" AND feel empowered by that. (And by nothing I am not putting down non-med people- I am referring to "doing nothing with dmd's" in this instance). I certainly understand this seems like the work of management with or without meds.

My next follow-up with my neuro is Monday and the next week I attend the speaking engagement so I am looking forward to hearing his view on it all and gaining valuable information.

Hope everyone had a great Thanksgiving and Happy Birthday Nikki

 
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Old 11-22-2012, 07:42 PM   #8
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Re: DMD, No DMD, and Symptoms

As you go into anything unknown, if you have armed yourself with all the info available, then nothing should take you by surprise. You might use the meeting as an opportunity to ask many questions of those who are supposed to be "in the know". Play the sponsors off of one another and you might hit a treasure trove of info.
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Old 11-22-2012, 09:56 PM   #9
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Re: DMD, No DMD, and Symptoms

I have already pretty much decided NOT to use DMDs if I do indeed get an MS diagnosis. The side effects and risks seem far too great for me and I don't really care to make the pharmaceutical companies richer unnecessarily. Don't get me wrong, I do take medications for other health issues that I have but only at a minimum. Not to say that I might not get to a point where I will try "anything" but as of right now, this is my plan.

 
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Old 11-22-2012, 10:15 PM   #10
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Wink Re: DMD, No DMD, and Symptoms

Quote:
Originally Posted by spharden View Post
So i have been looking at the different dmd's and their side-effects, personal testimonials on here, etc. I have also been reading about those who do not do meds at all. I guess the first thing that popped out is its a crap shoot either way and its my decision.

My question: If you DO NOT do the meds, what do you do when you have symptoms? Since main symptom onset in January, they have continually got worse and many additional ones have been added. I had one month where almost everything went away and the heavy fatigue released. I "almost" felt totally back to normal.

If I do not take dmd's is there anything to combat this fatigue? It makes me feel absolutely lousy, worthless for getting anything accomplished. I can deal with numb limbs and finding that redline and not crossing it, now that I know what all this side pain is, and the muscle spasms, I can deal with those. But this fatigue and feeling like it takes everything in me to get up and take a shower, to then feel the need to go back to bed is ridiculous and I can't seem to get thru that... any suggestions. Do dmd's help with that too or something else? or do dmd's just try to keep you from getting into a relapse to begin with?

thanks!
Hi, I am one who totally thinks you should be on them. It haults your flares and is known to slow the progression of the disease. When I was first dx, I could not get on them fast enough.

I had MS for seven years before my dx and had a doctor that dismissed my symptoms and said it was something else. But one year, those symptoms lasted weeks longer and I also had the fatigue you described. I then went to a different doctor who ordered a MRI and got my dx. Two months after starting the ms therapy all my symptoms that I would have each year dissappeared for years. I can't say if it was because of the therapy but these symptoms would come every year and then stopped once I was on them.

There is also medications to help with fatigue. But all med's have side effects and can cause other health issues. It all depends on what quality of life you are living with now and if you think it is the right choice for you.

 
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Old 11-22-2012, 10:55 PM   #11
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Re: DMD, No DMD, and Symptoms

Quote:
Originally Posted by MYSISSYGIRLS View Post
I am so glad you posted this as i am awaiting my first appointment with ms specialist in dec an if i am dx for sure i would like to know also the benefits of dmd or not. Have had a multitude of symptoms this past year. I get some breaks an as you i can live with the pain. I have noticed i get horrible dizzy spells when its hot or humid or even have an extra blanket on. Also anxiety that was coming at odd times even before ms was mentioned. I have always been sensitive to meds allergic to aspirin so im kinda afraid of.the meds. So it would be great to get some info on how diffrent poeple handle an make there decisions.thanks for starting this thread. Tami
Hi Tami, my first symptom was vertigo. I also have always had anxiety. I hope you are not dx with MS. But if you are there are several therapies out there. If one causes you problems, than switch to another one.

My first therapy was Avonex. It did give me flu symptoms but I stayed on it for a year. I got tired of spending my weekends not feeling well. I then went on Betaseron and that one at first made me really depressed and it took me four months half dose to get used to it and was put on Lexapro to help with the depression. I was then able to stay on it full dose for two years. But it did comprimise my liver and had to stop it.

I have now been on Copaxane for four years. It has never affected my mood but does give me site reactions but are an annoyance only.

I went to a seminar that had 5 neurologists from the Cleveland Clinic. They said to stay away from the new MS therapies until they have been on the market for a minimum of one to two years. They are just to new to know what kind of health issues they can cause. Plus, some of them are killers to your liver, more so, than the therapies that have been on the market for years.

Every person has different reactions to all med's. If one med does not work for you, try another.

I am a very strong believer in trying to slow the progression of this monster disease. When you are RRMS a lot of people can work, exercise and stay very active (like me). It is when you have the disease for twenty years and it moves into the secondary progressive form is when it starts affecting your life (how I am now). I read that 80% of people with RRMS will become Secondary Progressive. So if you can slow the progression down, I say do it. Hopefully, in the near future they can either find a cure, or learn how to repair nerve damage.

 
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Old 11-23-2012, 04:23 AM   #12
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Re: DMD, No DMD, and Symptoms

Hi and everyone, thanks for the birthday wishes!

I just wanted to mention, take a look at LDN (low Dose Naltrexone). There are zero side effects. Its so inexpensive, that no one makes any money off of it, and its biggest advantage is the reduction in fatigue. I am still on this..and will not allow my doctor to take me off of it.

There is a pharmacist in Boca Raton Florida who is a leader in MS/LDN research. You can read up on him Dr. Skip and LDN. THis might be the one drug you really do want to explore....and because it is NOT approved at this time in the US by the MS Society (could it be because there is no money to be made off it?) its not something youll EVER hear anyone talk about unless you go to Europe. It has made a serious positive impact on me. Skips Pharmacy has a ton of info worth reading.

Hugs,
Nikki
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Old 11-23-2012, 04:38 AM   #13
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Re: DMD, No DMD, and Symptoms

Hi- October was my 5 year anniversary of my MS diagnosis. Jan 1st will be my 5 year anniversary of being on Copaxone. Knock on wood- but I haven't had a relapse in almost 5 years. February will be my 5 yr anni for that- and I hope I make it and continue to do so well. At the time of diagnosis I had optic neuritis followed by numbness and tingling from the waist down, followed by a drop foot. Fortunately i recovered from all of the above quite fast. I had to be treated with steroids for the numbness and leg issue, but from there- no problems. I'm not sure if it is the Copaxone keeping me stable or not. I will never opt for the no medication approach until there is no option. Fight it with everything there is. That is just my opinion.

 
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Old 11-23-2012, 09:54 AM   #14
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Re: DMD, No DMD, and Symptoms

I think the most concern is being so tired. I completed hundreds of tax returns for the 2011 year and had a man come in last week (obviously filing late) and once I completed that one return, took a nap on my desk because I felt I had just written an entire thesis or something. While my boss is very understanding, not being able to do that task is not acceptable. My brain feels like its absolutely being strained when I concentrate. That is what I really want to change! The answer to how best to deal with that would certainly be the route I want to take...

A question: Since my main symptom onset in January I have only been without all this for one month. So for 10 out of 11 months I have been in the fog and dealing with crazy. I read about relapses lasting for 2 weeks to 6 months. How about 9 months? My first one was 9 months. Does that correlate to the future in any way? I guess I will get this info on Monday from my neuro but man this is getting old because i am being forced to find a new normal, which is totally opposite of who I have been in the past. (As far as energetic, volunteering, helping with my kids schoolwork- now its "go to sleep".)

 
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Old 11-23-2012, 11:06 AM   #15
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Re: DMD, No DMD, and Symptoms

There is no textbook example. You could be experiencing a cascade effect of one problem after another. In 2002 when I finally took disability, it was at least 6-7 months of non-work mental rest before I could feel the fog lifting. I pushed myself for a month before taking disability, but things only worsened and I knew I had to break. You might see if you can take a medical leave and rest your mind. I know that when I was teaching math to my youngest, the higher levels we studied, the more exhausted I became. I would take an hour to 2 hour nap before afternoon lessons.

Your fatigue is something which will (should- knock on wood) lift. You might see about a mental rest before and after tax season which should allow you to continue to work.
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