New Diagnosis, Questions

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Postby Wendigo » Sat Aug 30, 2008 12:32 am

Many months later - stopped working around Halloween of last year and started receiving SS disability in April of this year. I was surprised it was so easy. Been on Betaseron since around late January of this year with no major attack but the neurologist said there was a progressive component to my MS. The Betaseron patient assistance program has been great.

My neuro went on maternity leave in June and I must find another. She was unable to recommend anyone else. She prescribed Provigil for fatigue but said there were many others to try. Provigil works for me only if I've had enough sleep, at a very small dose of 25 mg morning and 25 mg afternoon, and it affects my up close vision. My insurance doesn't cover it so I get the generic from a Canadian pharmacy. Sleep is really the only thing that helps though.

The hardest thing is that there is no one to advocate for me. I don't want my kids to know how bad I often feel but then they think everything is fine except that I get tired and sleep much more than before.

Thinking of the future is overwhelming. There is only what I can get done in the morning before my nap, afternoon before another nap, and evening before going to bed.
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Postby Wendigo » Sun Feb 08, 2009 7:31 pm

I was doing ok on betaseron but my new neurologist thought a handwritten prescription was accepted by the patient assistance program and it wasn't. I tried to tell his staff the day before to call the program and get the right form for the doctor to fill out and fax back. The shipment should have been in my hands the next day or Friday at latest. He came in next on Friday and did everything right. He got notice everything was approved. I guess the shipping company didn't get the message and closed until tomorrow, Monday. I called the ER at the major hospital near me and the ER doctor said they had Betaseron. I went into get a shot even though my insurance won't pay for it, waited several hours and turned out they didn't have it after all. The closest hospital that has it (they read what it was from one in their hand) is 60 miles away. My last shot was Tuesday.

Not feeling good at all. Betaseron worked more than I thought. IT's not easy to find apparently. I only hope when I do get the medicine it will bring me back to where I was - certainly not normal but much better than this. I chose large font size but it's not happening and it's so hard to read this. I hope there is a same day shipping service available - I will pay whatever they want to get it to me tomorrow. Should have driven the 150 miles to stay with my old doctor who was an MS specialist but learned the hardest way possible -
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Re: New Diagnosis, Questions

Postby NHE » Sun Feb 08, 2009 10:21 pm

Wendigo wrote: I chose large font size but it's not happening and it's so hard to read this.

Which web browser are you using? I use an older version of Mozilla. In that browser, there's an option in the View menu to change the Text Zoom to increase the size of the font within the browser window. I find that choosing 150% makes the text appear about the same as a 16-18 pt font within MS Word. I don't use Internet Exploder but it likely has a similar feature.

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Postby Wendigo » Mon Feb 09, 2009 5:41 pm

Thanks - when my medicine comes tomorrow and the brain fog clears up some I'll try to figure out how to get into the Mozilla browser and magnify letters. I don't know why there is a font size choice on the menu here if it doesn't work - or maybe I'm doing something wrong.

No "attack" so far - a week tomorrow without the Betaseron - can tell the difference though. Attacks aren't part of my form of MS, yet anyway, just slow progression. This disease is so scary - my heart breaks for the young people who have MS.

A few months ago I saw something I try to never forget - a young man in an electric wheelchair sitting in hot sun behind parked cars, apparently stuck bent over sideways. I studied what was going on a minute - he was trying to grab a bottle of water with both wrists and get it in between his feet, where someone had tied his feet together on the foot rest portion to keep them in place. I went over and asked if he needed help - it took him forever to straighten up and I will never forget the look in his eyes. Maybe it was MS, I didn't ask. It could have and may some day be me in that wheelchair - I pray there is someone to help me if that happens. What courage that young man had to still go out and do what he had to do. He was all there mentally but very slow.

I proceeded to WALK into the bank, do the business I went there to do, WALKED back out to my car, drove home, made dinner, I even mow my own lawn. Don't know exactly why but I've lost 45 pounds in the last year and look the best I ever have. As long as my vision and memory hold out, I have time to pursue research and help others in a hobby I love.

I wonder if it's too much to hope for that when I'm done raising the last of my two kids in a couple of years - maybe I can meet somebody to share my life with. On good days I know that can happen:)
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Postby Wendigo » Tue May 19, 2009 9:52 am

I was doing so well and had an "attack" a couple of weeks ago, the first since the beginning of August of 2007. I'd done a long distance drive and lots of walking a couple of weeks ago in inappropriate shoes and next day the top of my right foot was numb, which progressed on the right side up to knee level over a couple of days. I could remember also what the initial attack felt like in August 2007 - it was as if a clock had been turned back to that time. The original symptoms, especially brain fog and fatigue, were all worse and right-sided symptoms were new - clearly a new attack. My neurologist wasn't sure the walking and driving hadn't caused my symptoms.

With the flu out there, the hospital IV clinic was not the place to be with a taken down immune system from Depo-Medrol. I found a home health agency who did the three-day treatment at my home, saving me about $1,500 in copayments and/or "negotiated fee" crap involved with my Blue Cross insurance. It was a bit scary getting a heavy duty drug like that for the first time at home but it went well. I'm glad the nurse came each day as I would never have been able to do it myself and ended up in the ER.

With my immune system down, I got shingles for the first time. This has healed incredibly fast and I wonder how long it takes for the immune system to get back to normal after Depo-Medrol. Normal for me is modified by Betaseron. I hope I never need it again but at least the process of getting the Depo-Medrol is streamlined now and I know better now what a true attack is so can get treatment sooner.

I wish I could figure out what precipitated the attack but still feel it's that sadistic 2-year-old somewhere pulling the strings and I'm the puppet.

I should be thankful it's just the top of my right foot and right side of my right leg that were affected. Don't need those to survive. I could have been blind or needing diapers and face the reality anything could be taken out at any time.

To go from January of 2008 until May 2009 on Betaseron without an attack - I guess that's pretty good. As far as I can tell, one attack isn't reason to change drugs, but if attacks happen frequently it's time to switch. It's all up to the 2-year-old pulling the strings.

The nurse who did my Depo-Medrol sees all types of MS patients and said from watching me walk, move and converse he would have been unable to tell I had MS. That made me feel better. I look fine but feel sick. I have to remind myself how lucky I am and my heart just breaks for young people who are forced to incorporate this disease into a future for themselves somehow.
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Postby Wendigo » Tue May 26, 2009 6:47 pm

I think I had my first "MS hugs" episode today. It's like all muscles at the diaphragm level, back around to the front, were locked up in spasm. It was a challenge to breathe normally. Lasted about 45 minutes, seemed like forever. There was nothing I tried that did any good and eventually the muscles relaxed and the whole thing went away. I was scared to move for a long time after the pain went away thinking that would make it come back. At least I'd heard of the "hugs" and kept that in mind when thinking of making a run to the ER. It was hard to figure out if it was gastrointestinal, like stomach pain before you get sick, or a musculoskeletal pain. I'm glad I was home - don't know what I would have done if out somewhere because it was almost impossible to walk upright with the pain.
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