badmommy
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August 10, 2006 at 11:01 am
Welcome to the family! here you will find not only support but other’s input as to what has or hasn’t worked for them. With CIDP, we all have different symptoms and we all respond differently to treatment.
Steriods was suggested to me initially. My neuro thought they would help speed my process along at the beginning. however, I knew the side-effects of steriods and told him that I would rather use them as a last resort. I began monthly infusions in November of 2002 and have gained back 75% of my loss. it took a few months before I saw the difference but looking back, I have definetly made progress.
I felt scared in the beginning mainly because so many doctors had not heard of CIDP so I knew that it was not common. Luckily, I found this website and have not felt alone since. I hope you find the answers you are looking for and the support you need in here. Welcome!!!
August 9, 2006 at 12:55 pmA wet dishtowel heated does feel good but it can also leave things pretty wet.
I was told by a nurse to fill a sock (perferably CLEAN, LOL) with rice. Heat the rice in the sock for at least a minute at 30 second intervals until you find the temperature that feels good to you. It will stay warm for quite a while plus your neck and bedding won’t get wet. I didn’t think it would work at first and was amazed at the results.
Plus, like you said, it’s drug free. (I don’t like taking pills either!)
August 8, 2006 at 9:14 pmWelcome aboard and congrats on at least having a name for your illness and knowing it is real.
For medical bills, most of us are currently facing those as well. I have called doctors and been successful in getting most of them to either decrease their balance or knock off the debt all together. I have also filed for patient financial assistence with the hospital, and they agreed to decrease my balance by 50%.
You can also file for Medical Assistence with your local public aide office.I hope you find some relief from the pain and heat and also with your bills. I know firsthand about having medical debt and it is no fun.
Welcome to the group – take care!Peace,
MaryAugust 6, 2006 at 4:29 pmMy headaches following an infusion usually start 24-48 hours after and will last for a few days.
I had never had migraines before I began the IVIG and never really realized what people with migraines went thru. After my initial 5 day treatment, I had to have an IV of caffeine and torodol after being rushed to the emergency room. Of course then, I went from barely being able to move to being completely wired from the caffeine…not sure which was better.August 5, 2006 at 6:29 pmWe were thinking about you when we saw parts of your area were without power.
Makes me cringe when I see the ComEd commercial saying that they are no longer in their price freeze (meaning rates are going up) and put $3 billion to ensure that those kinds of problems won’t happen.
Hope you are staying cool!August 5, 2006 at 4:31 pmThis is awesome news!! I love hearing stories of how others have done what experts would consider impossible. Keep climbing and this IL gal will be cheering you on!! AWESOME!!!
August 5, 2006 at 4:28 pmI used the premolded ones for a while until my PT said that AFOs would be necessary due to the foot drop. Then my doc wrote an order and I went thru [B]Hanger [/B]to have custom ones made. I have to wear a larger shoe size and take the lining out (I have another liner I added inside the AFO to make them more comfortable) and haven’t fallen since 🙂
I’ve graduated where I only where them when I am walking longer distances such as the grocery store, etc. they are bulky and uncomfortable at times but it sure beats kissing the pavement in public, LOL!
Plus, I was able to order them in a really cool shade of purple (my daughter picked out the color). I figured as long as I had to wear them, why not wear them with a sense of fun!August 5, 2006 at 4:22 pmUgh…muscle atrophy! I had it really bad throughout my feet, legs, glut, hands, and arms.
My PT started with my stomach muscles ( I had just had a baby) and my gluts and began to ‘rebuild’ them while the occupational therapist worked with my hands. After these began building back up, she worked my quads and hamstrings and forearms and biseps. I couldn’t believe how much I had lost until I started gaining it back. It took 3 months of occupational therapy for the hands and 6 months for the rest of the body to even resemble a normal person’s body again. I never regained the muscle in my feet as the axonal damage was too great so the feet and calf muscles still look incredibly scrawny:o But overall, PT was a wonder for me and really helped me regain a more normal looking gait.
As for the headaches, I had horrible ones both due to the infusions and due to trying to relearn how to walk and use my hands. My neuro said it was equivelent to studying too much – my brain was tired from having to work double time to do what comes naturally for so many.
I still get migraines following infusions and I get really whooping headaches if I’ve walked too much. Proof that I do have a brain (much to my brother’s comments, LOL) and I overwork it with something as simple as walking too far. Walking is no longer involuntary for me…I have to tell myself to pick up my feet…heel, toe, push…
I hope he finds relief from the headaches…they can really make or break a day.August 3, 2006 at 10:20 pm[QUOTE]The Benadryl made me tired for several hours after the treatment because I am very small.[/QUOTE]
LOL, that is what I love about the Benedryl!! My nurse hooks up one of the machines that takes vital signs so as not to disturb me and I get a great nap in!! Before I know it, my mom has arrived with the girls for lunch and my infusion is more than half over. I love it!
I have to echo what others have mentioned…it was several months of IVIG treatments before I realized that I was doing things I had not previously been able to do and feel things that before felt odd. I hope you continue the treatments with no problems and can look back here in a few months and see the improvement!:)
August 3, 2006 at 12:07 pmI wanted to add that IF your doctor does indeed have you premedicate with Tylenol and Benedryl, considering taking your own.
My infusion center charges $20 for the Tylenol and another $40 for the 2 Benedryl. When I saw an itemized list of these items, I began bringing my own. I also informed my insurance company of what I was doing so they could see that I was trying to keep expenses down where I could. They sent me a letter thanking me and it was noted on my file. Like I said, it isn’t much compared to the thousands the IVIG costs, but $60/month times 12 months adds up:)August 1, 2006 at 1:27 pmOnce I began monthly infusions of IVIG, I gained back 75% of what I lost. For me, I didn’t want steriods so IVIG was the first thing I tried as far as treatments. Luckily, it works for me. I am going on almost 4 years of taking them and have had a few side-effects but nothing I couldn’t live through.
The worst is the flu-like symptoms I had followed by the headache. By introducing foreign anti-bodies (from the IVIG) I had a few days while my body seemed to be deciding if it had the flu or not, LOL! The headaches were bad until I discovered Excedrin Migraine and Exedrin quick-tabs(for when the migraine was already going strong).
I also pre-medicate with Tylenol, Benedryl, and solu-medrol before the infusion begins. Lots of water and no bending over seemed to help the headaches also.
I’ve noticed with my pregnancy and receiving the IVIG that I havent’ had the side-effect of the headache. My doc thinks the increase in blood volume plus my veins look about 3 times their normal size may be the reason it doesn’t hit me as hard.
I hope it works for you – though it is costly and time-consuming, it has far less serious side-effects than some of the other treatment options.August 1, 2006 at 1:18 pmThere is a book at my public library called Nolo’s guide to SS benefits. it isn’t a magical book but it is full of wonderful information. it gives very good advice on how to file and more impo0rtantly, what to do should one be denied. It simplified the process for me by breaking it down into layman’s terms so I felt more confident in filing.
For example, I didn’t initially include anything about my treatments. But then I realized after reading the book (it gave chemo as an example) is that treatments alone made working nearly impossible. Not many employers would hire me to work 3 weeks out of the month and give me a week off for the treatment and side-effects that I encounter after each treatment.
Also, the doctor’s notes along with the nurse’s note from the infusion center seemed to very helpful. They were better to write in medical jargon what this illness is and what it does to the body. Since CIDP is pretty much unheard of, I think their letters gave a brief but thorough description of the illness.Good Luck!!
July 29, 2006 at 7:43 amWelcome to our Family, Vicki!
I’m impressed that not only did you notice the difference but you discussed it with your doc. I’ve heard so many stories of people thinking something wasn’t right but did nothing about it. One thing CIDP has taught me is that we need to trust our own bodies.
I was barely able to stand, unable to hold my children, and had no stamina yet the doc told me it was normal after having a baby:rolleyes: Luckily, I have a great Mom who pushed me to see a doc (and ended up calling in a favor to get me in the next day, LOL!).
Since that experience, I have learned that I need to be more vocal with docs and that each of us are so very different.
I hope you find not only useful info, but a support system who is trully a big part of getting thru this illness.
Welcome!!July 3, 2006 at 9:03 amI was fortunate enough to have a PT who had worked with patients with nerve damage so she was very familar with GBS and patients’ limits. She began rebuilding the muscles that were not affected such as my quads and upper arms. This resulted in a major change in my gait and ability to lift my infant. By building up my quads, I was able to walk a bit better.
I did yoga myself and found it beneficial in working with my balance. Now keep in mind I am no gymnast now, I have definetly seen an improvement. I used to take steps when trying to stand still (I was trying to get my balance) where as now I can stand still without wobbling around so much.
Pool therapy was a godsend for me but the PT I had for that had her mind everywhere but on her patient. I am currently doing a parent/tot swim lesson and love the added support the water gives me. No one notices my gait!!July 3, 2006 at 8:56 amI tried it briefly and decided against continuing it. Granted I felt like I just had an IV of caffeine, it did not help with the muscle fatigue that I get.
I can get a similar effect if I drink 2 cans of a caffeinated beverage (I normally don’t drink any) with fewer side effects. I do know some MS patients who tried it and found it beneficial in making it thru the day.Any drug that has the potential to be addicting should be carefully considered. If it works for you, go with it. All it did for me was super-charge my alertness however the rest of my body still moved in CIDP-mode:)
