Definition of Insanity: MS Style

My wife was diagnosed in 1995. Her main complaint has always been pain; mostly in the legs, but the pain does travel in many different areas of her body.

She use to take 3 to 5 prescribed meds(pills)a day for pain; plus an assortment of vitamins. That came out to be 275-300 pills total a month. Almost 20 years later, she is now taking 570 prescribed meds monthly, an injection 3x a week. Her doctor just prescribed a Rx med to take along with the 6 Tylenol she is taking a day! If you add the vitamins, it is almost 700 pills a month.

Is this type of MS treatment common with your readers? Or am I doing my part in keeping some pharmaceutical companies in the black?

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Comments

View Comments (8)
  • LuvMyDog
    4 years ago

    I’ve honestly never heard of anyone taking that many pills, not even close!
    I was diagnosed with MS 32 years ago and I have never, so far, ever taken a medication for it.
    I have good days and bad, pain, off-balance, fatigue, depression, but have never wanted to put what I consider, unproven poisons in my body.
    Some people are more susceptible to pain than others, some give in to it, I’m not, I don’t.
    We cannot judge what another person is feeling, all we can do is encourage and support and continue to look for answers.

  • Mare
    4 years ago

    Mike: What type of meds is your wife prescribed and how many is she taking per day? I cannot personally afford the injectables so I do not take them. For pain, I take 3 prescribed medications — Muscle relaxers, neurotin (gabapentin) and Hydrocodone. This helps with 85% of my pain so I can get out of bed and go to work full-time everyday. Of course, not everyone is the same.

    If you are not satisfied with your medical providers, get a new one. If she is still in pain, sometimes the damn doctors NEED TO HEAR that she would rather not live like this anymore and then she may get actual pain killers, not pain relievers. Pain killers DO WORK even though some of their studies show they don’t which I do not believe.

  • Mike author
    4 years ago

    Thank you for your thoughts on this topic. As you probably have read some comments I am being raked over the coals as being insensitive to her needs. All I am saying if you continue to take meds going on two decades and pain is not close to getting better, isn’t that a discussion at least? I do not see it as being insensitive to her needs at all. We are looking for a fresh start in this whole treatment plan. One year ago my wife took Aleve by advice of another “medical specialist”. One month later, she was in the hospital getting a blood transfusion because she lost so much blood due to a stomach ulcer caused by this ‘over the counter’ product.With my experience living with a person with MS all these years, if I didn’t care, if I did not raise questions, I would have bowed out of this relationship a long time ago.

  • LBS1
    4 years ago

    Mike,

    I think what you asked is whether this is typical. I don’t know the answer to that, but I can share that it is NOT what I’m doing. I had my first symptoms 15+ yrs ago, but it was not diagnosed. 3 yrs ago, I was diagnosed and referred to an MS specialist. He was very pushy with the traditional meds, even using scare tactics with my husband and me regarding if we’d be ok if I went blind if I chose not take the meds (I have a lesion on my optic nerve). I mentioned I’d be working on holistic treatments first & he didn’t agree. Said he’d support any diet I went on as long as I also took the meds he prescribed. We walked out & never went back.

    I don’t have insurance so thousands of $$ of meds/mth is not in our budget. Even if it was, I checked out the side-effects and chose not to go that route. I have friends who made different choices & feel we should each do what works for us.

    What I’ve done the past 3+ yrs is vegetarian, whole foods with very little processed foods, as much organic as I can find & afford, plus essential oils. I use peppermint EO for pain as a natural pain reliever with no side effects other than making our bedroom smell like candy! LOL!

    I have been progressing quickly the past 3 yrs. I looked at some of the meds again to see if they might halt the progression, however one is a chemo-type drug and the other has lymphoma as a side effect so I decided to forego that route. I’m rarely sick, have no depression issues, have lots of family support so I’m actually happy to deal with the symptoms I have rather than add new issues.

    I am semi-numb from my ribs down & on my hands, use a cane to walk or a wheelchair if I go somewhere I have to get over a lot of ground. I have some memory issues, but generally am doing very well. As I said, I don’t have depression issues which seems to be the exception with MS patients I’ve read about & I think that’s b/c I’ve removed many of the chemicals in my food that contribute to that.

    All this is shared b/c I did not read your post as from someone resentful of spending $ on meds, but someone who was concerned with the amount of pills your wife was taking. We all know that each med comes with side-effects (even if it does help some) and may be experiencing a myriad of issues related to all those pills. If she’s doing ok, spend the $ & keep on going. If she’s not, know that there are other options to consider. You asked if that was typical & I’m just sharing that that was not the direction we took. Bless you for your concern for your wife! I’m sure she’s appreciative as I am also for the support I receive from my husband. I hope this post is respectful and encouraging to you. 🙂

  • Mike author
    4 years ago

    I was very encouraged by your post. Thank you for your thoughts on this topic. As you probably have read some comments I am being raked over the coals as being insensitive to her needs. All I am saying if you continue to take meds going on two decades and pain is not close to getting better, isn’t that a discussion at least?I have attended way too many MS conferences and nobody talks about any conclusive pain remedies. They rather talk about organizing the next MS Walk. I don’t mind pushing my wife down the street in a wheel chair wearing an orange t-shirt..I really don’t. Another discussion could be the wear and tear of teeth when taking all these meds and the dental bills that go along with it. But I guess that would make me really insensitive. Thank you again for your post and loving support!!! God Bless you!

  • Mike author
    4 years ago

    I sincerely appreciate your understanding of my post. The money paid out has nothing to do with the pain she is STILL suffering after all these meds. I guess when the doctor prescribed a med to go along with the Tylenol she was taking; that put me over the top.I thank you for taking time for understanding my frustration with my wife taking an amazing amount of drugs (amazing to me anyway) and no results. God Bless and thank you for your time…

  • Anne
    4 years ago

    I want to second Allie’s comments. I was diagnosed on 2000 and worked full time with my own insurance and paid for my own meds until Jan 2014. I then became dependent on my husband and his insurance and income 100%.

    As part of our budget, we went over the cost of my meds but Rx and pills were never counted or questioned. I know how much they cost us each month. Do you think I like it?!

    I would take more of my pain meds but they are the most expensive out of pocket and so I just take enough to manage.

    If you think for one minute that your wife wants to have MS and have to take all this expensive medication than the insanity is yours.

  • nhvikinglady
    4 years ago

    Mike,
    Your wife has MS. Yes, this type of treatment is common, and for her, all she has available to help her cope with a myriad of symptoms that you may not even be aware of.

    If you are actually counting the number of her medications, down to the quantity of pills, this is obviously something that is on your mind.

    You are claiming to be doing your part in keeping pharmaceutical companies in the black, so I am assuming you are the subscriber of the insurance that covers your wife as a dependent on your insurance policy.

    Hopefully, your wife is still able to work, but if not, she is now enrolled on your insurance.

    For me, I am grateful be working, and carrying my own insurance. I would not appreciate having anyone question my medication requirements.

    My husband is a dependent on my insurance and if he was the one with MS, I assure you that I would be concerned about keeping my job, so that he would have the insurance, and all of the medications he needs. I would not be concerned about the number of, or the cost of his medications.

    I want to caution you of a couple of things.

    Please don’t exploit your wife, and her disease.

    It is something that as a person with MS, and a husband, find excruciating. It is humiliating and embarrassing.

    The number of, and cost of her medications should never be another source of stress added to your wife’s list of things she needs to worry about.

    She has enough things to worry about, and anxiety and stress can cause her increased feelings of self loathing due to her disease, of which she has no control.She has two choices, take her medication or don’t.

    I am quite sure that her choice will be to continue her meds, as you probably don’t have a clue what her life would be, for her, without them.

    As a person with MS, having forgotten to take my meds on vacation once, I was shocked at what the meds were giving me. I think we are blessed to have any medication available to help us endure life with this dreadful disease.

    Living with a person with MS for more than 15 years is probably difficult, but as hard as it is for you, remember it is far worse to be her, living with the disease that has taken so much from her.

    Allie – diagnosed with MS in 2009, symptoms presenting in the 1960’s.

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