billwhit1

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  • December 4, 2018 at 9:13 pm

    Mine also was mysterious and advanced.
    I’m having another bought of GBS or CIDP. We found that the infusions of IVIG were not working. We decided to revert to Plasma pheresis. After 6 times the PP was not working either. They concluded that my age had a lot to do with the system failures. The big one is Blood Pressure. It wonders all over the place. There is absolute no order to it when it jumps up. Sometimes I take my meds as the Dr requested and it still goes up. Later it plummets. So we take a smaller dose and nothing happens today but next week It tops the BP machine.
    I’m also having stomach problems as I’ve lost over 80 pounds. There are several other autonomic systems that are failing. This set of CIDP is the worst I’ve ever had. The neuropathy of my feet goes right on. My energy is at a low point. I breath hard just walking from the bedroom to the kitchen for breakfast. I’m able to sleep well this week but the is not always the case.
    I’m scheduled in to Mayo Clinic next week. A team will study my problems and separate the CIDP and old age. The tests are, to see if my nerve pathway is inhibited by loss of myelin . They shock you over 50 times and measure my response up and back. That we hope will all stay in the milliseconds. But I get so jumpy i do not understand how they separate an advanced shock and one that is normal (me at ease). The other difficult test is a nervebiopsy. Ever had something strike a nerve? It hurts. I’m sure by now they have thought of other hurtful tests. I should be down in warm Jacksonville no more the 3 days and I’ll be home on Friday. Must at least stop at Tybee, Savannah and other southeast spots. There are several misspelled words but you get them and tell me after you read the report, my “Resume’. It went very smoothie and NO pain. not.at all. My CIDP/Lewey body did not interfere with that procedure.
    I’ve read more about Lewey Body mine case particularly. It is sometimes called Lewey Body Alzeimer’s. Not good It will stay with me until my memory forgets everything. Mayo says 3 to 5 years/ Hey I’m 76 now , Split the difference 4 years I’ll be 80 years old then. I’ve had a wonderful life and I’m grateful for all I’ve had. Two years ago my Mother had Alzheimer’s for her last 2 years. She even forgot who I was and being big she was frightened of me. She was on a liquid diet because she had forgotten how to chew and swallow. My progress will be a little different not really except I’ll go out with my boots on. I have a little shop in my large basement and I love every bit of it except the coldness. One day one of my friends said why don’t you insulate your hot water heater? Then the basement would be cold.

    Mayo had more to say like a little Dementia., little Parkinson and Age. So I know my days are numbered , I’ve told my wife where to take me when she can no longer care for me. I’ll accept that but knowing she is safe and in control of our little home is enough. One day she will have to give up the home (52 years). I probably will not be able to help her but maybe we can be together again for another 50 years. Then I’ll see her for eternity.
    How does one keep from crying?. I guess by dwelling on the good times and a wonderful wife.

    Eternity??, but the Bible says we won’t know our wives. Now I’m about to cry again.
    Last week I saw an article about donating a brain for Doctors to try to determine more about GBS/CIDP/Lewy Body Alzheimer’s. Maybe it will help another lost soul.
    I whole heartily thank Mayo in Florida. Go its not as expensive as one might think.
    This was my second trip to Mayo (once up north in the winter and the last to Florida in late summer. Fla is the way to go.
    Right now its just a waiting game. The future looks bad for me. My Mom had Alzheimers to the point of forgetting how to swallow. You loose a lot of things by that time.
    I hate to be the bearer of poor news but Pray for me and yourself. Courage my man! I’m not a strong person and ap to cry when I know I will leave my wife, courage Bjill I do’n want her to see my tears. Love

    September 4, 2018 at 1:42 pm

    I did not know there was a sensory edition of this stuff. My GBS (?) started in 1984. We did steroids at first. Then we went to Mayo Rochester in the winter.Dr Bartelson told me to go home and try PLASMA Phresis. I had over 15 PP up to 1984. I had a 15 year break and I felt good. I like to exercise, run ride or just jumping.Last year CIDP attacked again. This time IVIG was the big boy on the block. It did nothing for me. After about 8 months we decided that IVIG was not helping. My Neuro decided to go back to PP for a short period of time. After 2 weeks and 6 PP we stopped. My Neuro told me thats it I have nothing else to offer. He (A Mayo trained ,by Bartleson) that may be we should go to Mayo again (Florida the time) So within 4 weeks I’m all set to go to a more pleasant weather. My neuro did send them a letter and my hospital is affiliated with Mayo. So they already have all my hospital records. Ive got a plan to stay for three days and a life time driver to take me., I’m having autonomic systems to malfunction. The biggest on is BP. I’ve about had to argue with a good DR. He just would not listen. He was called about every other day until he’s started to allow us to medicate as we needed. He has a real hang up about PRN but he finally conceded. We saw him just last week and ask him if MAYO should examine any special areas. He said no.
    So I check in on Monday Sept 15th. The only thing I don’t like about this is the nerve conduction tests. After about a half hour Im so jump I can’t even think.The nerve biopsy is painful but its over.I think they are going to try to separate autonomic system and CIDP.

    November 9, 2017 at 4:02 pm

    Well Ive just had my 11th IVIG (Providgen) and am not that much better. I’m on a 6 week interval now. I have alway been very very active person. At 75 I exercise 4 times a week. My idea of exercise is to work each exercise until I can’t do another repetition of it. I first ride an incumbent bike for 30 minuets of an hour with resistance. When I stop i’m breathing hard. Not through my mouth but heavily. I also break a light sweat on my brow.Light machine exercises for another hour. Thats 3 times a week and light chair exercises the other days. I’m still walking with a cane and having most of my symptoms remaining. More later fellow vets.

    October 14, 2016 at 5:48 pm

    Hi
    I have had about 12 rounds of Privigen in the last 12 months. CIDP has been with me since 1987. PP always worked for me but I ran out of places to inject the needle to remove and replace my blood. Also I had 2 very serious infections which were very hard to clear up. I am able to get Privigen at my Hospital which makes it covered by other insurance. I hope others have had success with this brand of IVIG. Ill check with my Neuro to see if he has used or can use the new subq. This is the first I have heard about this change in Privigen administration. Sounds good to me.

    October 14, 2016 at 5:00 pm

    Hi
    After many many urinary infections I finally started Cathing myself and that stopped the infections. During that time I had several Kidney stones, one which had to be removed by surgery. Not a big deal as the GI Doctor inserted a device which broke up the stone in place , removed some and the rest passed. We had great pictures of the stone , its surroundings and the resultant pieces of the stone. I’m glad thats over’ on to the next problem. Good luck to all of you with this problem. My Bowels have slowed a little bit but when I need to get out of the way.

    October 14, 2016 at 4:46 pm

    I’ve had CIDP since 1987 and yes I repeatedly suffer from Vertigo. I have had 2 xMayo Nero’s and neither said yes to this question. I did not ask them if it was possible but they both had my records and could easily read that this was a reoccurring problem for me.
    So before I talk to either I would appreciate the Name of the Neuro, or those Physicians who know this is possible. Knows ?? Anyone can guess even the most educated/accomplished Physician. I have all the symptoms of an MS patient except Cognitive problems and Scars on the brain. The only other thing I would mention is that I’m 75 years old and lots of stuff pops up for an male at this age.

    September 20, 2016 at 11:11 pm

    Sorry your having troubler with CNS. I’m in my 36 year of this stuff and each year a new CNS aliment comes my way. Ive had IVIG 18 times in the last 18 months. Last week I started Prednisone again. Tomorrow I start IVIG again. This past week my legs were so weak that I could not rise from the ground. “Ground you say?” Yes if the mail box is down do I wait until It can be fixed by someone else? Nope no me. I had to sit on the ground at street level bore 4 holes and put a piece of Unistrute from the post to the arm. 4 holes with a 3/8 VS plugin drill, 4 lag bolts turned in with the drill. Whats work of that? But I could not get up from the ground. I tried every my to get my arms involved to get me up but finally i opened the door, put my hands in through where the window was and lifted 200+ up to sit in the truck.Last night I fell 3 times my legs just collapsed. First time I hit a fixture and have a nasty bruise on my forehead. Yet next time I’ll fix it myself again
    1984 t0 2016 seems like Id learn something. This stuff will not get me down.I will no longer run but i’ll ride my bike for 1/2 hour at level 7 within a half hour. My wife keeps telling our preacher I’m sick keep me on the prayer list. I say Im not sick just have a problem or 2 at 75 lets celebrate life, seek prayers of our own and if others can ok.

    August 7, 2016 at 5:50 pm

    Well IM not the only one to experience damage to the autonomic nerve sys. I have always tried to get my Dr’ to see this.I have all the symptoms of MS except scares on the brain and cognitive slow down.
    This was a 12 days visit to Kennestone. I had very good service, food and care.
    This is the 10th time for CIDP. IVIG 3 times in the last 2 years. Seems like its about 50 thousand a pop so Ive got it covered. I suer am tired of this. Due to my pull through because of esophagus cancer I aspirate frequently. Phenomena alwaya followed. Sunday the 24 of July I aspirated 2:00 AM or so. I waited until my wife was awake to move to the hospital. You say how did I know it goes to Phynonia? Been there at least 5 times and it hurts and will wake me up.SO THE HOSPITAL SENT ME TO A ROOM . THEN AOUT 6: 00 PM got to a room and THEY started iv antibiotics. I responded to the med’s and then on Tuesday the 26th in the morning I aspirated again. yhis time it was followed by a stroke. I developed a Brain bleed (CT scanned) and a cardio fluctuation. It went from bad to worst. STAY OUT OF HOSPITALS. Each DR coming by Through his or her opinion without any overall care for my CIDP and pull through. They all nodded when I said CIDP but I knew they had never treated some one with all this and 75 years I think I should go to Vanderbilt, one of the Hospitals on the best for us list. I’m South of them and hesitate to leave my Neuro and regular Dr.They both have tried there best to treat the most with the most. I just fall outside the most Crowed
    Time is money sos they Patch and dash, looK back and pat themselves on the back, Smile and dash to a person they can help,they have the best education this word has to offer and they are smart.But again time is money.
    IU was thinking the other day only 8 in every 100,000 get GB and only 3 of those 100,000 get CIDP. How many of those 100,000 have CIDP more then 5 times. I think I’m on the tight wire as I get older. If anyone has better numbers then I have please correct me with a printed article that can be checked by a organization of Doctors or elsewhere.
    In the Hospital I lost 5 pounds and need to snack more often and get back to 200. I am a junk food junky. “CANDY< SWEETS and sugar”. I”m looking for feedback if you don’t mind.

    March 14, 2016 at 10:53 am

    7 IVIG in 2015, 9 IVIG this year. Then Imuran. I was not tested. My bone marrow quit producing all its stuff. All my blood work showed horrible. They stopped Imuran and my Bone marrow still has not recovered. Ive had past Cancer and Kidney disease both are problems whereby you don’t take this med. Going to see an Oncologist today to see if he has answers or knows anything about this drug,
    I have read the two references above and later today I’ll report the problems as the last reference recomends.

    December 30, 2015 at 5:31 pm

    Maybe I was a little impatient as at 73 my recovery time will be short and any one else at that age. Knowing how to eat came to me many many years ago. My size and hyper activity requires that I eat a lot. I have several times gained to much weight by eating 6 or more glazed donuts a day. Even at that I ran at least 5 miles 4 times a week and then played Tennis at night or other competitive activities. Waters over the dam. Now is now and I feel that my food intake and exercise are paramount to getting at least 5 more years. Hmm me at 78 never happen but I am square with my maker. I hope you get sound not radical or innovative diet support. Ask a RN (Registered nurse) She will lay it out for you or tell you about a diabetic Ensure…Glycerna (SP). It has much less sugar and might help. Hey ask an RN. Dr’s don’t have the time and others with magic solutions should be avoided. Are your Nutritional consultants aware of your stomach reactions to Ensure?

    December 29, 2015 at 4:55 pm

    You know I’ve been answering in earnest and responding to your questions but this question is so basic I wonder if you were even able to get on the banana truck. No offense intended but ask your Doctor or a nurse who has dietary experience. I eat what ever my wife feeds me even when she is on a diet. I eat out maybe three times a week 2 at fast food and one real nice restaurant. Other wise its veggies and beef,PORK, fowl, cereals,milk, sweets, BOOZE once in a while, so get a diet from one of the two I mentioned.
    IF you are in a wheel chair it will take years of work to get moving again and if you are 73, like your Dr said ???
    You told me he said “its all over”. What did you say …ok
    Bill

    December 28, 2015 at 9:25 pm

    Hey
    Well you have read this sites explanation of what CIDP does to your myelin and possible to your axons, right? The prognosis is fairly good if you are treated early and are young. Diametric of both those, does not have a reasonable prognosis unless…. You eat well, take real good care of the remaining muscles. If they are allowed to atrophy its not good. Normally your body will regrow the mylin and axons(?), it takes time. IF Your legs, arms show atrophy probably the other muscles are not so good also. You must exercise and try to get the muscles to at least be improving. If you don’t its down hill all the way. Then yes you will not feel like IVIG is helping. You’ve got to help yourself. I’m no Doctor or even a neophyte first aider but as an Engineer I know that if you don’t maintain the supports of your (what ever) it will not continue to preform as designed. My remaining years probably will not give me time to regrow all I’ve lost ,but I will be pushing my self to recover all the way.

    December 24, 2015 at 3:55 pm

    GH
    You are lucky that you have not had many repeat occurrences. I was having a special DR a Vascular Surgeon insert the connection and it still got infected. So beware! If PP was 90% ok Insurance and Medicare would not have allowed a $25,000 each procedure for 8 or more. It’s $$$ to do IVIG and health threat to do PP

    December 24, 2015 at 3:41 pm

    Yes there are other things but … One is plasma pharesis which removes most of the attack cells and it has always worked for me. The problem with it is the connection which is deemed invasive. Since I have had about 8 boughs when only PP was being use I ran out of connection places. I also had two serious infections which were hard to clear up. I had 4 in my chest, scar tissue stopped that,2 in my inner thighs that I can remember and was not sedated. My Neuro also tried Prednisone 2 or 3 times and it cause me to attack everything, loved ones, relatives friends and any one else that came near. I’m real grateful for IVIG. Now what does IVIG do? This site has the information look around you’ll find it. Not doing any good you say? Look if you are as old as me nothing repairs is self as quick as it did when you were 21. If your Immune system was allowed to keep destroying myelin and or nerve cells for a long time it will take longer to repair. On my 2nd bought I lost my knee reflexes. This happens each time and in-between boughts they slowly regrow,and return. I cannot tell you how fast even a Doc can’t. Its you and the grace of God. So unless you really put forth eating well and pushing yourself to not let muscles atrophy you are not going to be 21 (or 60) again ever.

    December 21, 2015 at 5:50 pm

    Yea I’m still wobbling (walking). The other day I had my walking stick on the top of my foot and did not know it until I sensed something weird and looked down. Fortunately I am not alone. I married a lot better then she did. The light of my life is also a retired RN. She can help me deal with Dr other then the Neuro. The other Dr’s just don’t believe you when you tell them something. What I get is oh we’ll run xx test(s) so we can rule out this and that. We say Guys that is not the problem just provide the meds I need as I needed before this specific bout. Sometimes I feel like all Dr do is treat the best they can with the most the can. If you are outside the norm they are become remote and want to test, test without a reasonable reason the then “rule this out”.
    I know about that out of $ stuff. Last year I went through the procedure to get my Mom on State Medicaid. I had to prove she was out of money and show them a lot of bills. She owed over $20,000.00 by that time. It is especially difficult when you are managing her remaining $ with out the courts involvement. It became a matter of who the heck are you saying she is broke or qualified. I had a lot of paper work to find, understand, prepare, meet dead lines,validate and a legal Trust to write. One of the last things I had to do was talk to the States advocate for indigent persons. She acted like I was not the person doing this as I did not have the proper pettigree (sp).