Took ~ Awesome and precise description of the ‘PE experience’! I think I had the same nurse ~ or a clone thereof ~ and certainly the dieticians all went to the same school together. Alas, PE didn’t work for me because after the 12th treatment I was considering converting and old refrigerator in my garage and doing it myself – how hard could it be.
I’m now on the IVIG drip and can do amazing math calculations based on drip rate technology. They told me in school that someday I would actually need to understand math and physics. Each drop is mesmerizing and eventually produces a trance-like state with a side dose of astral travel. Done right it exceeds anything Hubble has done. I look forward to my next treatment.
Best to all – life is not a gas; its a fluid.
New to posting.
I was diagnosed two years after the first sign that something was not right appeared. My family doctor has been brilliant, helping me push for answers. My Neurologist that I now(went through 4) have is brilliant, and has done everything possible to help with treatments and the short and long range effects of this disease.
At this point I have gone through prednisone treatments and two years of IVIG, and last week started Plasma Exchange. We are waiting for approval of Rituxan, and are hoping to start my first round by mid September.
Well P.E. is not reversing the disease I do believe it has slowed down its aggressiveness.
My diagnosis is not great: I currently am still working, but have lost complete use of my left foot, calf, and hamstrings. The disease has also gone into my right leg with severe drop foot, and in my left arm and right side of my face. I have a slight drop in my face, with “tremors” on a regular basis. Weakness in my left hand and arm is becoming evident, and muscle atrophy in my lower legs, and now arm are very distinguishable.
The good news is that although the disease is spreading rapidly I had a lot of muscle throughout my body, and my legs were very heavily muscled. This has allowed me to continue to walk with assistance only from canes, and occasionally from my wife. Going down stairs is my greatest fear, as falling down is far more terrifying than falling up!
Plasma Exchange to date has been the most effective route in making me “feel better”. I do not believe it is reversing the condtions created by the disease, and the slow down might be strictly in my head as I am desperate for any signs of improvement.
Do yourself a favor and keep accurate records of any improvements. Set some goals for yourself, a workout in the gym, a short walk with a loved one, preparing a meal without falling asleep right after finishing.
More than all of that take charge of your body! No matter how drained I am I make time for the gym, some days great, some not. I have found ways to balance my body against benches during workouts, and I am trying my best to keep as much muscle as possible over the next 12-18 months.
As my days shorten, as tremors start throughout my chest, and other areas of my body I keep my intake of pain medication to a limit. My employer has been great as far as my work schedule, and I know at some point will be off on long term disability.
Be honest with yourself, your loved ones, and doctors! Do not say your improving if your not, however if you show any sign of improvement shout it from the roof top, claim your victory against this horrific infliction!
All of that to say this: don’t give up. Whether it is P.E., Chemo, or Stem Cell-fight, don’t let this thing win, and if you feel like it is take a deep breath, call someone, hug someone, or just go stand on a lawn with no shoes on and remember how incredible it feels.
Take care and keep on the good fighting
It is weird how everyone is different. I am hopeful that you and your doctor do find the right treatment. If I have learned one things so far. That is that as everyone has said. Each person is different and responds differently to the treatments.
Mike got worse with ivig and steroids worked for him. For me steroids made me worse and round one ivig helped alot. others go far beyond and find none of the normal stuff works but hit on something down the road.
It sounds like your Doctor is good. If he is talking acceptance as is already, perhaps you do need a switch. I find it odd he gives up just after the ivig and pe. He may just be preparing you for a longer than normal time to figure out a treatment plan and not that he is giving up. There are many other tricks in the bag. They all just take time. Keep up your good attiutude.
I hope the best for you.–tim–