Looking for CIDP patients in Tri-Cities, TN
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March 3, 2010 at 9:05 pm
I am tired as I know we all are but have finally realized it is time to branch out and find support for me and my family as I am not from the TN area and while I now know that you all are now out there…. I feel so isolated.
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March 3, 2010 at 11:21 pm
Hey. I am not sure what the tri-city area is in TN. I live in the Jackson, MS area. I was diagnosed with CIDP about a year ago. I too have tried to search out people in ths area to share information with. My doctor gave me the name of one other of his patients in this area, but after talking to her found that we had very little in common as far treatment. At this point, I get an IVIg treatment every 4 weeks and am on 40mg of prednisone.
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March 4, 2010 at 5:12 am
Hi Shelley,
I do know where the Tri-Cities area is having been born and raised there. 😀 I sent you a PM in response to yours and while I don’t actually know anyone down there who has CIDP, aside from me when I’m visiting my parents, we are all only a few electrons away here on the forum. 🙂Julie
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March 4, 2010 at 9:09 pm
Shelley,
I am on the other side of the mountains here in North Carolina. I live in between Hickory and Lenoir, just at the bottom of the mountains down the hill from Boone NC.
Which part of TN is the tri-cities?
Dick S
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March 4, 2010 at 11:11 pm
Dick S,
Boone is beautiful!!! Has grown a little faster than would have like to have seen but.. 🙂
I am going to have to go read up on your story. But for now and for my children’s sake must go to bed …Dr. Seuss’s Birthday and yes of course pajama day. They are so excited.
Take Care, Shelley
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March 5, 2010 at 3:18 am
The Tri-Cities are: Kingsport, Bristol and Johnson City – the three towns/cities share an airport and therefore that area is known as the Tri-Cities area of Tennessee – or TRI on your luggage tag if you are fortunate enough to find a plane that will fly there for less than a zillion dollars and seventeen million years – its cheaper and faster to drive there from Alaska than it is to fly.
But I’m thinking it’s likely some of you have heard of Bristol at least… racing anyone? 🙂 Kingsport is known for Eastman Chemical Company and Johnson City has East Tennessee State University – and a medical school.
I am also very familiar with Boone, Hickory and Lenoir having spent much of my youth hiking and skiing in that area, it’s much prettier than the Tri-Cities area. 😉
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March 6, 2010 at 4:53 pm
Well all is quite in this household for a second so I am hoping that I can type quickly.
At the end of Jan., my primary care ordered IVIG for me for the 1st time in over a year when they had only given me 2 o3 doses over a 6 mo. period. I am not as knowledgeable as everyone hear about IVIG so,, this is what I know….
While in the hospital on my “usual” monthly visit, I wrote down what was on the bag. IMMUNE GLOB HUM, CAPR IGG 10% 77G over 2 days 5 hours each day and the second day it hit like a ton of bricks.
In the meantime, I ended up with a 14″ blood clot in my right leg. They had been trying to stop my cycle unsuccessfully through birth control which is what they feel caused the blood clot.
Now I have a neuro who ordered 4 Mondays of IVIG over a 3 hour period and that is all I know about it. I will be asking all the right questions, I hope on Monday my main one … Does the neuro know about the one I received in Jan and would it have changed his plans. Don’t ask we can never seem to get through to the neuro or his staff. I guess what happens when he is the only one in this area that will take our ins.
sorry have to go..
Be well…and stay positive
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March 6, 2010 at 5:14 pm
Barbara, I am also on prednisone long timer unfortunately right now have been tapered down from my last hospital visit at end of Feb to 20 mg.
Julie, I am going to be cutting and pasting from our emails :O
I was dx Nov. 08. The hard part with mine was of course the dx. I spent about 70 days in the hospital in-between end of Sept. til Jan. I have been to the Mayo Clinic in Fl. My main treatment up until this point has been long time pred. which we def. didn’t want but I am now receiving IVIG. The unfortunate part is that I have stomach paralysis with this and every month I end up in the hospital “crashing”. They haven’t figured out how to break the cycle. They thought that it might be my cycle but after trying to stop it through birth control for 3 to 4 months….
Every time I end up in the hospital, being filled with iv (I have a port) pred and have to start the taper all over again.
My pain med at home had ended up being liq. methadone FOR CHRONIC PAIN and it was for 0.25ml every 4 hours. The stigma about this drug and the way that I am treated by NOT ALL but most emt’s and er docs is horrendous so much so that I realized it is not really helping my back pain but making me a jittery mess sooo…… cold turkey last Tue. bc went in on Wed. to discuss trying something different now not as strong. I am a completely different person then the one who was dying in Dec. 08. However my primary wasn’t there and NO ONE wants to touch my meds over there.
Julie, ETSU is a wonderful! Part of my medical family… I have the best top man Dr. Blackwelder however bc he is top he had warned me that he would not be there every time but of course follows along so I usually have to see the residents when in the hospital and in cases of I need to come in today.
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March 6, 2010 at 5:16 pm
without discussing it with my primary was what I meant to say about them not wanting to touch my meds.
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March 6, 2010 at 9:51 pm
Well, if you guys want to hook up, let me know. I can get my wife or one of my kids to drive me and we can visit for a couple of hours, if you want.
Let me know. we can work out the details. It is so nice to alk to someone d=face to face instead of over the internet.
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