I see that we all share a diagnosis category, but have many variations. For 3+ years have been puzzled over sudden onset (a few days)weakness, fatigue and poor balance. Until 2 weeks ago, never heard of "polymyositis." EMG showed muscle and nerve damage. Why not just muscle? My PCP tells me that when I reach the 5 yr. point, there is a 70% chance that I'll still be living (!) Where does that come from? The Dx finally came in when CPK went over 1400.
The cancer center where i was being treated for a rare type of NH Lymphoma (stage I and localized) in 2011 has recently given me the information that there was only a 6 mo. window of opportunity for remission. They had ruled out recurrence of nhl, but didn't persue what else might cause the LDH blood marker to rise. Current doc suggests no treatment, as any of them might "backfire" and make it worse. Is there any reason for me to see a specialist? Previous to being diagnosed, saw two neuros, one rheumy, a hand specialist, and a neuro surgeon--all for nought.
Lastly, in two weeks am to play in a highly demanding bridge tournament. Energy level is a big problem. Any suggestions on how to get a temporary lift? Low dose of Prednisone for 3 days? Cattiene drinks? Of course, plan rest leading into the start of it.
Will be very grateful for any help in understanding.
Your PCP sounds like he/she is depending way too much on statistics, and maybe old ones at that. When I was first diagnosed all I did was research online and I also read our life expectancy. I am friends with many other patients who have lived with PM/DM for many many years!! 50-60+ so please don't get caught up in the doctors research!! Maybe they just want to be informed so they're reading too much into it. Before they had all these "wonderful" meds the life expectancy was that low.
As far as for your bridge tourney, a low dose of Pred may be a good idea. Also lots of water and maybe if you're into it lots of fruits and veggies :-)
I am very new here. I also have both nerve and muscle involvement per two EMG’s. I was told the muscle is characteristic of dermotomytocitus. The nerve indicated some other disease was involved but couldn’t be helped anyway. Pursuing it would require a new specialist. It was suggested I go to the Mayo clinic. The nearest one to me is a full days drive. The suggestion was we make a mini vacation out of it. We can’t afford a mini vacation much less the mayo clinic which isn’t covered by insurance. Saying all that …I understand your frustration.
As far as the tournament rest as much as you can. As suggested hydrate and keep high energy snacks with you. Bridge is a major mind game so if you can find a quiet place to shut down for a few minutes if you have that option might help as well.
Thedona, thanks for writing:) My primary care doc prescribed 20 mg of prednisone, which ruined the bridge tournament for me. It suppressed the cortisol in the blood, needed to participate in a competition. Then it prevented sleep all the next night. I had to play (was committed to three partners) in the highest level event for 8 hours on only 45 min. of sleep. That convinced me that my statistics loving internist wasn't up to helping me with myositis. Have been to see a new neurologist, one who specializes in the areas my symptoms fall. He took 9 vials of blood and scheduled an MRI of the neck/shoulder nerve juncture. Won't receive the findings until early April. Even if its just a matter of "managing the symptoms," without a diagnosis, there can be no trustworthy treatment.
Very much appreciated your sharing your knowledge with me.
Neil please don't get to feeling to down some times it takes time, it took three yrs for them to find out what was going on in my body. They had me in and out of the hospital tests that I didn't even know were out there, but they will find out for you I am sure it is just hard to go through all they do to us for sure. Know I will be thinking of you and hoping for the very best. Sending gentle hugs !
Bethann--Thanks so much for your support:) When going through cancer, my doctors were interested and efficient, quick to set up treament, and they informed and included me in decision making. Dealing with myositis has been a stark contrast to that. Other than when participating on this web site, have felt "out in the cold."
So, much appreciation to all of you for "being there."
Neil some Drs really don't understand Myositis but when you find the ones that do you can feel a lot safer. I have had it for over 20 yrs and I am still learning about what to do to help myself and to take care of me. Please if i or any one can help just speak to us there are a lot of people out there, I have felt alone for many years and now feel I have friends out there that understand. It helps for sure. Gentle Hugs tonight !