A whole lot to think about...

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A whole lot to think about...

Postby mome24 » Sat May 18, 2013 5:40 am

Hi, I'm a 44 y.o. female without official diagnosis. My optho-neurologist is amazing, and has said she feels I do have MS but will not begin medication until she's absolutely certain. I am undecided as to whether I will ever take the meds or not. A dear friend of mine with MS recently passed away after a "mystery" illness effecting her immune system. She went to Mayo and while there, saw the MS specialist who told her that MS patients with relatively benign symptoms should NOT take the DMDs because they are so toxic on their own and are immuno-suppressants. Literally, our last conversation was her imploring me not to begin the DMDs. I have some small, punctuate lesions on the brain that don't scream "MS" but are there nevertheless. I definitely have CNS issues: arm and hand numbness, tingling, burning, extreme weakness, mostly on left but a bit on right. Foot drop on right side with loss of reflex. Inability to move tongue to the left a few times. The most distracting symptom right now is that my entire left knee feels like I've rubbed 'Icy-Hot' balm on it, or like I've got extremely cold water on it.
Over Easter weekend, I woke up with extreme weakness in my left shoulder: I could lift my arm from the shoulder, but it would "flop" back down within a few seconds. If I'd wait a bit, I could lift it again, but again, only for a short time. I began some oral steroids, and after 48hours, it was almost back to normal. Is this typical or MS weakness? Why could I lift it, but not sustain the lift? My arms and hands are definitely weaker and I have less dexterity than before: braiding my daughters' hair or holding a book to read are very difficult.
There's no rhyme or reason to my post, and I apologize for that. I'm just wondering what others' experiences with medication, muscle weakness, etc. have been like.
Thanks.
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Re: A whole lot to think about...

Postby eric593 » Sat May 18, 2013 12:00 pm

Hi mome24,

Your symptoms do not sound very benign to me, and given that plus your age at possible diagnosis, chances are that you may not experience a benign course. You describe quite a number of symptoms as well as new ones...sounds like an active disease profile to me.

The older DMD's have a fairly solid safety profile but with lesser efficacy. The newer DMD's that seem to show greater benefit in slowing progression, have much more serious possible risks associated with their use, although users are monitored far more carefully for those risks and the rate of risk is very low, especially in the first couple years of use. Still, these are risks that should be seriously weighed. There are a fair # of new meds under development as well, although they too seem to tinker with the immune system in one way or another. Since they don't know what causes MS, all it seems they can do is try to impact the immune response that is most certainly involved.

I wish I had begun DMD's earlier than I did because I developed a fair amount of disability before I agreed to take the DMD's. My neuro wasn't that keen on me taking them either, so it was easy to put them off. Unfortunately, a lot of damage was done during that time and I have a lot of lesions and a lot of neurological symptoms that impact my daily life. I am somewhat risk-averse and I am not much for being a guinea pig when it comes to treatments. The prospect of developing PML from treatment, albeit a small risk, is terrifying to me as that to me is worse than MS. Many others are willing to take that very small risk because of the clear benefits of treatment born out by research. The risk is also very very very small the first couple years of treatment.

I really think it all boils down to weighing risks of disease progression against possible risks of treatment. Some doctors are more conservative than others, and you can find a doctor on any side of this issue of 'when to treat'. We all too have different levels of acceptable risks, it is a very personal decision. It is important for you to have a realistic understanding of how MS progresses, and what exactly are the risks from the meds. In terms of % of people developing the serious side effects, it is very low, although of course if you are one of the unfortunate people who develops those side effects, it won't matter to you that most others do not. You have to be comfortable with the risks you are taking and feel they are worth it for the benefits of slowing the disease progression.

I wish you good luck with your decision. The nice thing about taking these meds is that you can decide to stop treatment at any point as well (although with some of the newer ones like Tysabri, you may be at risk of a rebound disease effect if you stop too quickly after starting). I suggest you make a list of pro's and con's both for and against treatment. Read the studies to learn the benefits of each treatment as well as the risks, realistically. Read the natural history studies to inform you of what generally happens without any treatment. Tens of thousands of MSer's are taking any one of these treatments and are attempting to impact the course of their disease. Regardless of what you decide, you won't be alone in that decision.
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Re: A whole lot to think about...

Postby mome24 » Sat May 18, 2013 2:59 pm

eric593,

Thank you for your response. You are absolutely right in that I need to weigh the pros and cons of the medications. I also need to educate myself a bit more as to the disease progression for someone my age. Because I am still very active, I can generally convince myself that "everything will be OK", but all the times when I realize that I have a new numb spot (about 5 minutes ago) just makes me want to bury my head and cry.

I'm glad to hear that your DMDs have been effective for you. I don't want to continue accruing disability, either. I've had 2-3 flares since last fall, and in-between each I seem to recover almost completely. Almost. It seems to be "two steps forward, one step back". I felt 100% last week for the first time in 2 months, and today I feel about 75%, with numbness and arm pain.

Thank you for the information. It's invaluable to have the insight of others that have experienced this.
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