MSucks! Living with a lesser known disease

Band Aids and Bullet Holes There is a saying you will hear me say a lot. Treating the symptoms, and then treating the side effects of one drug with a second drug makes about as much sense as slapping a Hello Kitty Band Aid over the hole someone just shot into your chest. It will not fix the hole, it will not stop the bleeding, but it will cover it up if only for a second or two. You can still bleed out behind the Band Aid. When it comes to Multiple Sclerosis every doctor I have met has his own approach to Band Aids and bullet wounds. One gives me medicine to treat the symptoms of MS and another gives me medicine to treat the side effects of the first drug. None of it actually fixes the problem, and before you know it you find yourself taking 30 pills a day and you have no idea what pill treats what. Then you have the doctor who decides you are on too many pills, cuts you off of most, and within a year you find he has written you at least 6 new prescriptions, all in the name of science. I ended up cutting myself off of most of my meds and got to go through the ever so pleasant experience of withdrawals because I could no longer take the amount of poison I was dumping into my body each and every day. Another sad discovery I have made recently; when it comes to doctors and MS patients, the drug companies have convinced the doctors that you need to be on something to treat the disease. If there was any drug on the market that came with more than a 35% efficiency rating, I would possibly agree. However, this is not available. This also leads me to mention that although the great doctors take the time to diagnose the proper form of MS you have, most refuse to actually write it on your chart. There is a very good and bad reason for this. If you are not RRMS, your insurance will not approve any treatments because the FDA has not approved any treatments for any form of MS other than RRMS. There are 4 different categories of Multiple Sclerosis you can have. • RRMS- Averaging 85% of people diagnosed is RRMS (Relapsing- Remitting Multiple Sclerosis). This is where symptoms come and go or get worse and then improve over time. RRMS patients tend to respond well to not only steroids but also most of the DMDs (Disease Modifying Drugs). • PPMS- Effecting around 10% of the MS community is PPMS (Primary Progressive Multiple Sclerosis) I speak from experience when I say symptoms hit you like a freight train and never let up, though certain ones can come and go, and when you think it will not get any worse, it does! Doctors will tell you this is a slow and steady incline of symptoms; I will tell you that is bullshit! I will also mention PPMS is characteristically known to cause more damage in the spine than in the brain and one of the classic tests that determines this form is that you do not respond to steroids as it is not inflammatory. Well, you do respond, just not well. • SPMS- (Secondary Progressive) this one is a bit confusing, it starts out as RRMS and about 50% of people with RRMS will end up with a SPMS diagnosis within ten years. This is kind of like a combination of RRMS and PPMS. I feel this is more due to dr error as they are so quick to point to MS but not take the time to figure out exactly what type you have before they put you on drugs. • PRMS- 5 % of people who have MS are later diagnosed as PRMS (Primary Progressing Multiple Sclerosis). With PRMS, you have a steady increase in symptoms with the added unpleasantness of exacerbations (flare ups). I am not sure how the determination is made between PPMS and PRMS. Personally, I have PPMS (or so I am told) yet, I still experience exacerbations; somehow I am not in the PRMS category. My most recent trip to the doctor was as always, a major source of stress and frustration. I am not sleeping, when I do sleep I move constantly and I wake u p in pain. On a good night I get 4 hours of interrupted sleep. I have been on every sleeping pill they offer, and was on Ambien CR at 12.5 mg and was still ending up taking more than one if I wanted to sleep. Which of course lead to the other problem…running out of pills and not sleeping for half the month because they can only give you 30. If that wasn’t ridiculous enough, some moron in California wrecked their car and blamed it on the Ambien. So Congress intervened and decided no one was allowed to have more than 5mg. Dr changes my prescription to 5 and I slept for 6 days before I was out of meds. He was then able to increase it to 10 mg...woo hoo. Then he wanted to put me back on 12.5 but of course since Congress knows better than any of my doctors… my insurance denied it. I have been on this medication for over 2 years, my body has gotten used to it and it no longer works. I made the mistake of asking for something else. I was told no. Not because I am on too many medications, not because the next step is highly addictive (mind you I have been on morphine for 3 yrs), but because I refuse to go back on Tysabri. It does not seem to matter that Tysabri made me sick 2 weeks out of the month, and it ran a risk of killing me. None of that seems to matter because it stopped me from growing new lesions. I am not saying that all doctors are idiots and I am not saying do not try the DMDs. What I am saying is that you need to listen to your own body. You need to be able to determine for yourself if something is helping or not. This is a decision that you and only you have to live with. At the end of the day the doctor gets to take off his lab coat, go home and have a nice evening. You get to go home with not only this drug and all the effects of it, but the MS comes with you. It sucks, and there is not a damn thing anyone can do about it. Some people do great with the DMDs, and some do great with Tysabri. I hear stories all the time of people looking forward to their next infusion because it made them feel great and gives them energy. I was the opposite. I went home after an infusion and crashed, and then I spend 2 weeks fighting both a sinus and urinary tract infection. And any time anyone came near me with germs, I got sick. This is not an easy way to go when you have two children to take care of. I stopped the TY when I was sick almost a year ago with my 3rd round of the flu. Then I broke my foot and ended up getting surgery, then I broke that, and on and on for a year. I got 2 infusions between the 3 surgeries. And I got sick both times. I have finally come to the conclusion I would rather not spend my time being sick and I will just deal with whatever this disease throws my way. I tried Copaxone, had no effects from that at all until my MRI showed I grew 11 new holes while on it. Then I tried Avonex, which gave me flu like symptoms with every shot and then I broke out in hives because I turned out to be allergic. This knocked Betaseron and Rebif off the list because they contain the same ingredients. So we moved on to Tysabri. I feel like I have run out of Band Aids and my doctors refuse to allow me to live life the way that I want. Then I remembered that my doctor’s word isn’t law. In fact, last time I checked I pay them to provide a service, thus they work FOR me. And if they refuse to get on board and do things my way, I will replace them with doctors who realize I sign their checks. I do urge everyone to watch out for doctors who are quick to hand you a Band Aid instead of offering relief.

In the last 2 years, the numb patch of skin on my leg (which lead to being diagnosed with MS) has set off a scientific treasure hunt of every doctor within a 50 mile radius.

What they are currently drugging me for/ treating me for today:
* MS- I now have 36 holes in my brain and spinal cord, all over 55 mm in size.
* Grave's Disease/ Hyperthyroid (which we knew about 10 yrs ago. 6 yr ago we killed my thyroid, but the MS meds have created a zombie thyroid that has come back o life to take over the world.
* 4 broken bones in my spine- 2 of which were from me falling a whole 8 inches (7 months ago), the other 2 are from meds/ physical therapy used to treat the first 2.
* Degenerative Disc and Degenerative Joint Disease
* Osteoarthritis
* Optic Neuritis
* Neurogenic Bladder (my brain no longer tells my bladder how to empty.
* Bipolar Disorder/ Depression/ Anxiety (well, duh, ya think I might be a little depressed?)
* Chronic Fatigue
* Insomnia (yes, I have both)
* Torn Hip Flexor/ Bursitis
* Pinched Sciatic Nerve
And I am sure there are more dx's to add to the list that I may have forgotten... did I mention I have MS and holes in the brain, so I tend to forget things?

And in 2 years time: the countless doctors, nurses, the over 100 doctors appointments, the 30 trips into the MRI machine, God only knows how many needles and blown veins (I would guess this to be around 80 veins, and more needles), and over $200,000 billed to my insurance company... and all of my doctors, specialists, nurses, surgeons, radiology techs, IV Therapy team, at home care... they have all worked so diligently in the last 2 years to...? You tell me. They have been unable to fix the first damn thing! Not a single thing on that list.

They have medicated me, infused me, shot me full of drugs, convinced me to shoot myself with needles, my current pill count is 22 a day plus a monthly infusion... ha and I am still in pain, and I am still broken. I have tried acupuncture, chiropractic (which was helping for pain but I have 4 broken bones in my spine and he cannot touch me), dieting, physical therapy, praying to whichever God would listen, everything short of voodoo and believe me, if I thought it would work, I would try it. I have been banned from: bending, lifting, working, drinking, going outside when it is hot, standing, walking, they tried to ban me from sex! They are working so hard to save my life but they have not realized that I no longer have one.

At this point, I wish to take this list and attach a reward. The first doctor who can fix one thing... I don't care if it is the back, the thyroid, the bladder, or whatever. But it has to be one of the things on this list... so let's start a collection for the reward. You guys want money? Body parts? I will give you a kidney and two ovaries full of eggs that I am not using! Anything you want. JUST FIX SOMETHING!! I have lost all faith in the medical community at this point. Or maybe it is just Virginia Doctors and I need to move?

So, I am scheduled to go in Thursday for cortisone injections in my hip. I am not wagering any money on whether it works or not. I am curious to see if this doctor can do what no man has done before, or if he will be your typical doc who fixes nothing and finds something else wrong with you. I am trying to be hopeful, but this is the same doc who sent me to the surgeon about my back. I set myself up for a huge disappointment with that one. Bouncing off of the walls excited that I would be getting the surgery and it would make the pain in my back ease up some, only to have those dreams crushed and being sent home in tears.

Yes, I have become angry, and bitter, and frustrated. I will not apologize for this. I have been playing lab rat for 2 years and it sucks. Oh and that is not the whole list of what they have found in the last 2 years, this is just the list of things that decided to "treat".