My name is Pam and I’m a 43 y/o single mother, from Cape Coral Florida. I have 21 y/o twins who are both away at college. My nightmare began in January 2015, when I started having burning in my feet and hands. The doctors assumed it was from my Diabetes, even though I had been under control for years, with an A1C of 4.6. The pain started to get higher in the extremities and then the fun started. I was diagnosed with a UTI in February 2015, three days into treatment, I lost all ability to void. I went to the ER and was put on a catheter. That was the last time, I didn’t have a catheter placed. I had a suprapubic catheter surgically placed in August 2015. From 2015 until now, I have seen 3 Neurologists, with two having no idea what was wrong. I started losing my balance, weakness, pain that wouldn’t stop, memory issues, dexterity issues and finally after falling so many times, I was given a walker. I couldn’t and still can’t, pickup my feet and my arms where becoming weaker, to the point that using the walker is extremely painful and hard to do. I found the last Neurologists, in December 2016. She said based on all my symptoms she thought I had CIDP. We did testing and when the results came back I was diagnosed with CIDP. Unfortunately, because it took so long for me to get a diagnosis and start IVIG, I was told that the condition I’m in is the best I will be. They can only hope to stop the progression but can’t reverse the damage. Since I started IVIG, my disease has gotten worse. I now have pain and weakness from the neck down to the fingertips and from my lower back to my toes. I’m currently being fitted for a wheelchair and have hoarseness of the voice. I’m going to a ENT doctor on Friday 11/10/17, and I’m terrified. I have very little support at home. Everyone seems to think I can do all the same things I used to do. The doctor had my license medically revoked and that caused a huge problem with the family. No one can ever give me a ride so I pay a fortune using LYFT, at the moment. I’ve been waiting for disability for 2 years and haven’t worked since the end of 2015. While I continue to wait for disability I’m also trying to get SSI. I’m living with my parents, who moved me in when my kids left for college, because of all the falls. PIt’s been a rough few years and I’m seeing a counselor to help me mentally deal with this disease. I’m hoping that this group will have some good tips and answers to questions, I can’t seem to find anywhere. I look forward to communicating with people who know what I’m going through.
Hey Pam! I’m your story reads like a horror novel of bad turning worse and then even worse. However, I️ too have been to the edge of the abyss and looked down only to be reestablished in many aspects of health in a short period of time. I️ too have dealt with a Decade of CIDP and I️ can assure you that you can and get better! You can regain lost physical ground to CIDP! Please don’t take the position that what you are today, is not what you can be tomorrow. The prognosticator last of remaining at this low level you are now is BS, and don’t mean Bill Scott) expect healing, meditate or pray for healing.
Steroid infusions are an alternative to IVIG if it ain’t working. Higher doses of IVIG can be administered.
There are other treamments beside IVIG . Insist on a change if it’s not working.
Get you pain under more control by taking more or different medicines. For me the Fentanyl patch is most effective at reducing my foot pain.
Don’t give up on yourself. Talk to the counselor, talk to anybody that will listen. Stephen Ministry volunteers at your church might be great for you to talk with weekly for encouragement and support.
Don’t worry about long term addiction to opioids as the one certainty you may have in your future unfortunately is some residual pain from nerve damage. All other aspects of the physical demolition of your body can be overcome! Did the doctors rule out guillen birrrea as your diagnos? Things went bad for you so quickly like the acute version of CIDP which is the Guillen Barre (spelled wrongly) .
Don’t be embarrassed to ask for help.
Talk to your kids about what is going on. Maybe less like a Mom and more like a sick friend and your friends (daughters) are scared shirtless for you. Their Mom is really sick, super fast and they don’t know what to say so they say nothing or Withdrawal.
Do you have long term care insurance?
Do you have disability income insurance?
Do you have life insurance with a long term care provision?
Do you have an annuity that can turn imon any lifetime income? You can take money out of IRA without 10% penalty if done as 72T distribution.
Reach out whenever or with follow up questions. You’ve got this beat already, you just don’t know it yet. Turn to the one who saves and heals! But this forum doesn’t allow religious theme unless taken to a specific site, so I️ left off many of the faith based encouragement normally needed to facilitate a healing that we are looking forward to! You will overcome! HoustonStrong! Harvey sucks! Go Astros! Go Texans and Rockets!
Thank you for making me see that just because it was said I won’t recover function and insist on trying something else. I am currently getting no income, until Disability decided, to make a decision. I was living off my 401K but, it’s really starting to run low. I have fantastic insurance, that covers all my treatments and has not declined anything that a doctor said is needed. They did increase my IVIG to 45g over a 5 day cycle every month. I was tested for the other disease (I’m not going to attempt to spell it) and it’s not that. From 2015 until now, I have steadily declined, except for the bladder issue, which was rapid, with no symptoms, other than a UTI. I’m just nervous about the voice change and what it means if the nerves are in fact damaged. It’s this Friday, so it’s going to be a long week. Thanks for the great response.
Pam
I too was diagnosed with a partially paralyzed vocal cord. My daughter, Sarita, was attending University of North Texas getting her masters degree and I was invited up to be examined by her teacher as a patient for teaching the group of students. One of the vocal folds doesn’t close all the way. This has gotten better for me over time, but I never noticed a major change in the voice quality, just softer and easily horsed.
Take good care of yourself and can’t wait to see the miracle in store for your healing!!
Thank you William.
Pam
Pam also know that one therapy for strengthening the vocal cord is singing! So sing loudly with strong breath support and praise God!
With your restrengthening voice, sing!
CIDPSUCKS
William T. Scott
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It took almost 2 yrs to be diagnosed. I was to 3 neuroligists and finally a Dr. Murry in Meadville Pa had me get a nerve and muscle bipsy and spinal tap in Pittsburgh. I could hardly walk and pain was terrible. Mine started digging and laying patio stones. I was 72 but did outside work. That night pain was terrible, I didn’t sleep and kept taking hot showers. Went to Choirpractor and he helped me the most. Dr.Murray sent me to Cleveland clinic. I had a young Dr. Tavey. She did blood work and all kinds of things, and finally said I had CIDP. Before going to Meadville I went to a sit down mri in Greentree in Pgh. they said I had a vertebrae that was broke, but couldn’t tell when. I had a lump where my bra was on the left side and it hurt really bad. I was sent for therapy and they did everything and pain made it worse. I never saw about the ivig because I thought my medicare and ins would not cover. Dr. Tavey said if I didn’t get treatment I could be in a wheel chair. Finally, I called the chemo center where I would get the treatment and told the ins person my doctor didn’t want to give treatment because Cleveland was out of Pa. She was mad and said my insurance would cover. She is not allowed to tell you that, but she did because I was getting jerked around. I had hip and lower back pain if I stood too long, so a few months back I went to Transfer Pa and got some kind of shots like series of 3 about 3 trips and the last shots helped. When this happened, my middle organs and all hurt so bad, and I swelled like 4 inches. Hands are still numb and can’t use them much. I get spasms a lot. Arms twist and fingers do the same from nerve damage. I am doing a lot better, but still walk like I have ms. I had 3 cousins that have ms and that is what I thought I had. Don’t give up and just try your best and keep positive, we just got a little beagle puppy and we have an 8 yr old red beagle. So I keep busy and helps me through all this. I pray you will get better. God Bless Donna
Doll, it seems you need the blessing. I can’t believe that you have to suffer and are not getting the proper drugs to help you. You need to get an advocate to help you. I hope you get the help you need soon and enjoy the puppy. Thank you for your support.
Pam
Pam,
So sorry for your plight. Any nerve disease like this really stinks. CIDP is a hard diagnosis. I had two very good doctors swear I did not have it but I’ve stuck with the doc who says I do and usually do well. As others said, you can feel better. Once treatments start to slow the progress, your body can start to heal. When the pain gets bad it’s hard to function but you do your best. Keep a positive attitude (hard I know) and I hope you start to regain some function.
Check in again and let us know how you’re doing.
Jeanne
After 2 yrs and many, many doctors. They told me it would not get
better. I am way better so don’t give up I can’t walk real well, I use
absorbene junior gel horse linament. It helps my muscles. My calf
muscles hurt. If you are getting ivig, make sure you always drink plenty
of water for your veins and so you don’t get a headache. Should always
drink lots of water. I wish the best for you its hard. Everyone thinks you
can do more than you are doing. When I am up and down all day to take the
pup out I get ankle cramps or leg cramps. The more you move the more
cramps I get, hands are numb so its hard to even shower and use them. Try
peeling apples and getting cramps in my thumb and fingers and goes up my
arm. I try to get under hot water to end them. You can’t force them.
Just keep your faith. They say to get your b12 vitamins and a lot of the
b vitamins. I saw this Renew on fb, but they are so expensive. God Bless
Doll, I have the same symptoms as you. Last night I had cramps in both legs I started to cry. It hurt so bad, I ended up taking a medication, I have for this, and it helped very little. I wish you the best and hope you become stronger. I try to explain to my family, just how hard it is to do things, but they just don’t get it. I’ve lost 60 lbs since all this started and I’m not even trying. I drink lots of water because of my catheter, so that’s never an issue. Good luck and thanks for responding to me.
Pam
Thank you Jeanne, I do try to remain positive. Your right it is hard but, it won’t do me any good to be down about everything. I find it hard month after month of IVIG, increases in the dose, and nothing changes but a new symptom and worsening of what I have. My Nuerologist is fantastic and caring, she is my biggest advocate. She is very perplexed as to why the treatments that have been tried are not working as well as they should. She will be doing another EMG in December. This will be the first one since treatment started in March 2017. I’m keeping my fingers crossed but, I know my body and I’m not expecting any change. Thank you for your kindness. I will let you know how I make out.
Pam
Your welcome I have flexiril to take if I get them a lot. I only take
once in a while. I know its frustrating.
I wish you the best and don’t give up. god bless
Phew! you are having a tough time. I cna not type much so here goes. I applied for SSI online. It took me a week to do so. I did it though! The site is very user friendly. You can stop and restart where you left off. I get no help either. my 26 yr old live at home son is barley able to take care of himself.
IVIG has helped. I got a drug reaction from my first round, but my doc is exellent and got me on Prednisone, IV I self administered with the instruction of my Home Infusion nurse. Aetna initially deigned any treatment. I have fought for every inch of my recovery.
IVIG took almost a 6 months before I saw results, ( First treatment was stopped due to reaction.)
Don’t get frustrated. Read through here and you will see every one has a different regime, of sorts. I take a Methyl Folate 10MG and Lipoac acid supplements. These also are tools in my fight.
Keep a record of what works and what doesn’t. Can’t type any more hang in there!!!
I’m sorry you are having such a hard time also. I use voice activated typing which allows me to still use a computer or my phone. My neurologist is going to be playing with the treatment after 3-6 months on the new dose of IVIG. Your right, everyone on this site, has something different that works for them. You should look into different programs for typing. I use Dragon and another one built into my phone. It might help you. Thank you for responding.
Pam
There is an excellent credible 2015 Online Video featuring Dr Kenneth Lorson who is a Neuro MD and a Prof at TUFTS University - I just watched it myself.
He speaks specifically about CIDP with reference to Guillain Barre Syndrome. And no, the Video is NOT about GBS per se but CIDP. The video does mention issues you have shared in your entry re: loss of ability to urinate, what it means when IVIG treatment worsens underlying symptoms, losing the ability to walk, residual pain/weakness from your neck downward etc.
As he is an MD, he can be pretty technical at times re: terms used and such. I suggest you watch the Video, write down any questions you have and then address with whoever your current treating Neuro is and/or the Neuro you or a family member can do an online search re: CIPD and the nearest University level teaching hospital.
So sorry to hear of your dilemma and hope things improve sooner rather than later for you. PS. No idea what sort of license you had that was revoked - Driver’s License? He shouldn’t have done so without your consent. If it is a DL you are referencing, keep in mind just because you can’t drive currently doesn’t mean you will never be able to drive again in the future once things become stabilized for you.
And yes, it takes a while to qualify for Disability- you need your medical records with Test Results to help make your “story” more credible? Have you or can anyone call the Social Sec administration to find out how to go about obtaining a faster response? Something in writing from your treating MD that ID"s the diagnosis and esp ID your limitations, things that you can no longer do on your own or by yourself. Impact involving Activities of Daily Living has had on your life would be most helpful to include. Whoever your current MD is, is he/she willing to write correspondence on your behalf clearly identifiying what your current limitations are from a physical standpoint as well as in terms of Mobility (or lack thereof).
I am no medical expert. Do look at Dr Kenneth Lorson’s 2015 Video- I bet you will find it helpful if not downright illuminating.
I hope your current Neuro is associated with a recognized Large teaching hospital in or close to Cape Coral? If not, it would likely be well worth taking all your Test Results to go see a Neuro/Neuromuscular specialist at the closest University teaching Hospital anywhere near where you live (sorry, I’ve no idea where Cape Coral is in Florida). Expertise matters.
Best wishes!
Thank you for the great information and I will definitely watch that video. I have a lawyer for disability and because the final diagnosis comes after disibilies cut off date they will not use the diagnosis or look at the testing that went with it. My lawyer is working extra hard to Them to move faster but, they are so backlogged, nothing they can do will make it go faster. Thanks for the response and all the information. I’m foinfg to watch the video and go to bed. Goodnight
Pam
Pam, I was having severe leg and arm cramps and told my neurologist and he worked up a vitamin cocktail and it has worked wonders. Talk to your Dr. about it. Feel your pain. JDU
Thanks Jim3. They did put me on potassium. The doctor ended up prescribing a non narcotic med that helps with the cramps. I have my IVIG infusions next week, for the whole week and that will help for a short time.
I will definitely talk to my doc about vitamins.
Thanks again
Pam
I hope that you had a great Thanksgiving!
But if it wasn’t great, I hope it was at least above average! I wrote some stuff last week that I sent but somehow it didn’t deliver.
William T. Scott
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