After much deliberation I have decided I am just going to quit MS.
 

So I followed up with pcp today who sent me thyroid ultrasound and ordered more bloodwork, so tomorrow I have bloodwork, friday I have TY infusion, Monday is the Ortho follow up.

pcp and neuro have signed off for ortho to do vertebroplasty procedure in all of the broken bones. I refused to go back on any crazy people pills, as they all made me crazy.

The next appt with pcp is next month where he has booked a whole hour and would like to have a phone conference with neuro because he realizes I am ready to stop taking all meds and call it a day. He agrees I should not be on medication to counteract other medications, but he does not want me to stop them all. In fact he wrote me more prescriptions while I was there... 5 minutes after telling me I ma on too many meds!

Sometime in the next month before going back I am supposed to follow up with the new endo (already determined we do not like his office), follow up with ortho, have lumbar MRI and bone density scan done AND have the vertebroplasty done.

Lets see, did I miss anything? Oh yeah we got the labs back form last time and yes, it was another Ty induced UTI. He wanted to do cortisone shots in my hip to stop the swelling... but the neuro says NO STEROIDS with the ty. So I am pretty much on my own with that one...

I am so tired of being poked and prodded and xrayed and mri'd and infused and touched and.... you know I am just tired. And I am grumpy. But I just give up. I am quitting MS. I tried it for 2 yrs, I have decided I just don't like it, it's not for me. I think i would like to send it back

did you keep the receipt? we have a strict no receipt no return policy ya know. :hug:

and dont forget, if the box is opened and you've used it, they might not take it back. :mad:

did you receive this as a gift? or purchase it for your own enjoyment? :p

Can we start a class action lawsuit against the manufacturer?

LOL. I wonder if there is a customer service rep I speak to. I think my MS is malfunctioning. it's defective!

Oh sure so you think it's okay to just quit?!? Fine - then I quit too!!! We can all quit and be a bunch of quitters. :)

You know all joking aside, I don't think I have ever felt so absolutely defeated by life as I do right now. The doctors are scartching their heads over the Thyroid going crazy again, yet a google serach for the cocurrenece of Graves Disease and MS tell me that one of the main triggers of Graves Disease is immune supression therapy most commonly Beta Interferon.

Each doctor is telling me I am on too many meds, yet they keep writing prescriptions. Been fighting with SSDI idiots since june of 09 and still not getting anywhere with them.

The bones in my back keep breaking form the sheer pressure of my joints swelling in my spine but they don't know what exactly is causing the inflammation.

We know Ty causes inflammation... yet my infusion is friday, but this may very well be the thing that has set my thyroid off. This may also be the reason for the brittle bones. BUT, it's the only drug in the last two years that has done anything to slow the progression of MS.

My hip would be an easy fix with cortisone shots and PT, but I cannot have either of them. Again we go back to the Ty... no steroids allowed. And the broken bones in my back pretty much make physical therapy impossible.

I am at a crossroads and I am stuck. Do I stop the Ty and just let the MS take over and accept defeat or do I stay on the Ty and stave off the MS, and watch the rest of my body fail?

I know that with everything going on depression and anxiety are natural. I know that stress triggers manic episodes. But I also know that there is not a mood stabilizer on the market that is going to make this better, so I am not willing to start anymore meds. I will find ways to deal with the emotional side of things but it would be so much easier if I could see some kind of improvement in the physical side.

I just don't know. My doctors all seem to be idiots lately.

No words, just a big healing hug..:hug:

Leggs, I think you have to make up your own mind what YOU want to do? One of the choices may be the right door that you open. Think about it, write down, the pro and con's. Then open that door.

The Vertebroplasty procedure, is that bone fusion, or surgery for your neck, or is it radio frequency pulses?

Good luck making a decision, it's hard. :grouphug:

Its the one where they stick a big needle into the fractures and fill
the holes with cemented. Which should be a blast considering its my t8 t11 t12 l1 and ortho doesn't know i may have broken my coccyx yet because he's been on vacation

Quitting my DMD was one of the hardest decisions I had to make in a very long time. It wasnt life or death, but a question of quality of life. The interferons kept my liver/pancreas unhappy and my blood work set clinic records. The copaxone took a long time to take hold, but once it did, I started the mounting tally of side effects from it. As each week passed me by, I became overwhelmed with the increasing efforts to just try to find my balance in a new normal. I eventually reached a point where I said to myself that I would rather be dragging a leg, or yes, god forbid sit in a scooter and have my wits about me, my sense and sensibility about me than have that 30% chance of preventing the next relapse. it was a full year of research, debate, MD asking, relative/friend asking, and evaluating before I reached the point of ENOUGH!

I am NOT saying you should drop your DMD, but maybe you can take a look at all of the meds you are on, and get one of your more responsible MDs to help you get a better routine going, so that your bones, thyroid, and inflammation are not soaring. I cringe to say it, but can you add something to control the inflammation, say a zyflammed style product? or natural food that help with inflammation, like onions, and garlic and yogurts with active cultures, and remove things that add to the load like high fructose corn syrups, and sodium, and highly processed foods. I know you have a young family and a hugely busy schedule, so sometimes its so much easier to grab whats quick.

I want so badly to travel to where you are and just hug you! :hug: I can feel your exhaustion thru the screen. :(

Don't quit....Fire everybody instead..:D

All joking aside, I am sorry you're having such a tough time. {{{hugs}}}

I think that quitting is a fabulous idea - MS is way overrated and the fringe-benefits are not nearly as good as they make them sound.

Updates:
 

Well, the mood has improved a little. Seems I just needed to hit the release valve and let it all out.

Endo: Results of ultrasound; blah blah blah lots of technical terms, long story short, yes my thyroid is overactive, yes it is swollen again indicating graves disease, and the doc should have my bloodwork back today pretty sure it will say the same as the last two tests. Follow up with Endo wed afternoon to figure out what to do about it. I have decided I am not having my thyroid removed, I would be willing to do a low dose radioactive iodine thing to try to slow it down but I am not willing to kill it and have to rely on meds for the rest of my life.

PCP: Not too happy about me pointing out his flaws in the thyroid category, he scratched his head for over a month and i spent 5 minutes on google and figured out steroids and immune supopression drugs are the biggest triggers for Graves Disease in people with MS. I also refuse any more psychotic meds as the thyroid is the likely culprit for the increased anxiety. Antibiotics to treat the sinus infection and the UTI, hopefully will be back to somewhat normal in a few days.

Neuro: Also not too happy with me, but tough $$$$. Although the Tysabri seems to be helping to slow the progression of MS it seems it may be hindering the healing of my back and causing thyroid issues. This of course is inconclusive. So I called and cancelled my infusion scheduled for today and have resfused to reschedule until after I see the endo and ortho and they can tell me for sure if Ty is the culprit or not. Neuro says it is a bad idea to come off of Ty. However, I have decided until all of my doctors weigh in and all of them come up with ONE plan of action about fixing things I am not willing to start any new meds and I am not willing to put myself into any more jeopardy. It is my body afterall and I am the only one who gets to feel the pain and deal with the stress.

So that is pretty much where we stand. No one is happy, and I am being a pain in the you know what. And I will hound, and I will nag and I will pester until they figure out what to do to make me happy. DD and I have decided to make one last trip to the beach this weekend because we both need it and because I know I will be out of commission for a while and this is probably our last chance to go before it gets too cold.

I just checked - the MS stre does not accept returns. Figures!

In all earnestness, I feel your frustration coming thru loud and clear. Know that we are all there for you. Trust you will do what you need to do, all in good time.

I think you will find great reliefef from the spine cement deal- my mother in law literally said she felt it was a new lease on life! Several folks have commented how great the results were for them, as well.

Hang in there! Group hug (well, gentle group hugs):grouphug:

Well I'll be da*ned. Why didn't I think of that??? :)

Inflammation! This word keeps coming up in what you write, Leggs. I too have some inflammation in my spine now, which is a result of breaking my kneecap, having my leg in a cast for a long time, and now having distortion of the spine from all of that. So my back hurts. Spasms unexpectedly, very painful, hardly can walk.

What am I doing for it? Well, one thing, trying to fight inflammation. For me, Chinese herbs are a good inflammation fighter, particularly one which "cools' the body. I got these from an acupuncturist. I couldn't say if you need "cooling", but I'd need it if I had
all the chaos going on in the spine that you have, plus the other chaos in the thyroid and the nervous system.

I was afraid to take herbs, as I have not always reacted well to them. I am doing well with this coolant called Flex (Heal) by Evergreen herbs, from the acupuncturist.

Also I am doing acupuncture itself. I don't know if you can afford this...it might be worth a try. I found it wonderful 30 years ago and now I am at it again out of desperation. Also PT is gradually helping me with my spine.

But I think your spinal problem sounds different from mine, and seems to be a result of
too many meds. I wonder which ones to stop?

Because I have another disease Porphyria which makes me chemically sensitive, I have had to rely on non-drug means, for the most part, to help with MS symptoms. The Swank diet has been my mainstay for around 26 years now, but I go far beyond that when I can with the diet, going organic, being sure to have some raw food daily (not ALL raw, which is too hard to do, especially with kids), and especially getting organic
protein. I can't do that now because I am in a "facility" and I know the non-organic diet is NOT helping the inflammation. I will fly the coop as soon as I can no matter how hard, just to cook better food.

You have so many things to adjust to and think about that none of us can give a comprehensive answer. However, how about trying a couple of things: anti-inflammation herbs and foods; Swank low fat diet, low salt too to cool your overheated body. Naturopath and/or acupuncturist if you can afford these.

I would love to take back my three diseases to the store, too.

The MS store wont take my MS (slightly used) back.

I wonder if I can sell it on eBay?? I dont think I'll charge a lot of money for it.

$5 or best offer?