I went and read the Spoon Theory after seeing someone on here recommend it I must say it's very helpful in giving a visual for others of our daily struggles. If you get a chance you should google it. I read it to my husband and he agreed it did help him understand my daily bumps in life. So I guess I'm a Spoonie.. lol. It's a great visualization example. As for myself I am hanging in till treatment MONDAY!!! IVIG starts Feb 15. I am praying it helps and I can continue working. I do wonder though for the rest of ya'll at what point did you realize maybe you can't keep working and then what then .. At 34 I'm lost right now trying to figure out what to do. I am still able to walk though with difficulty, pain and fatigue. As well as walking weirdly but hey I'm still walking even if it isn't pretty. However lately it's becoming more and more difficult to do, or to use my arms, or just have energy to move around period. I was diagnosed fairly quickly I think so if IVIG works I have hope I'll be able to feel more normal and continue on as is, but if not or if I stay at level I am I'm unsure if I can keep this level of activity/work up long term. I've been suffering through it hanging on to hope of the IVIG treatment. The laser focus of that has helped drag me through the days but long term doing this just not sure. Just asking for any insight or advice.
I spent the past few months asking myself that same question! I can't get IVIG because our insurance carrier flat out denied it even though they acknowledged it was the best treatment for me.....how does that work?? My other option was IV prednosone(sp) and after much debate and many second opinions my doctors and I decided not to go that route.
But my symptoms are worsening and each day working is more difficult than the previous. I can't afford to quit working and have been advised that I would be declined for disability because there is treatment (the reasoning being if I had either treatment I could recover enough to continue working). I feel I'm in a "catch 22" and my neuro agrees. Sadly my doctors and I are hoping I get worse...enough of a crisis the IVIG will be covered, but not bad enough that I lose too much function or it can no longer help me.
My life has become all about work and rest. No social life. No other activities at all - my employer gets all my spoons. I work and go to bed. I can no longer drive. My husband gets up early so he can help me in and out of the shower, dry my hair for me and help me dress (buttons and zippers now elude me). 5 more years and I can retire at 62, but it's hard to imagine how I'll get there at this rate.
I pray the IVIG helps and you do well with it! I've heard it is a real miracle for some and life returns to "almost" normal. Let us know how you do with it!!
Thanks for responding. I am so sorry to hear you are in limbo and unable to get the help you need. I like you really need to work and need the insurance of course, which my employer provides. I will keep yall posted and I hope that you will get the treatment you need soon. Take care of yourself.
Maggie said:
I spent the past few months asking myself that same question! I can't get IVIG because our insurance carrier flat out denied it even though they acknowledged it was the best treatment for me.....how does that work?? My other option was IV prednosone(sp) and after much debate and many second opinions my doctors and I decided not to go that route.
But my symptoms are worsening and each day working is more difficult than the previous. I can't afford to quit working and have been advised that I would be declined for disability because there is treatment (the reasoning being if I had either treatment I could recover enough to continue working). I feel I'm in a "catch 22" and my neuro agrees. Sadly my doctors and I are hoping I get worse...enough of a crisis the IVIG will be covered, but not bad enough that I lose too much function or it can no longer help me.
My life has become all about work and rest. No social life. No other activities at all - my employer gets all my spoons. I work and go to bed. I can no longer drive. My husband gets up early so he can help me in and out of the shower, dry my hair for me and help me dress (buttons and zippers now elude me). 5 more years and I can retire at 62, but it's hard to imagine how I'll get there at this rate.
I pray the IVIG helps and you do well with it! I've heard it is a real miracle for some and life returns to "almost" normal. Let us know how you do with it!!
I know what you mean about working with CIDP. I got CIDP 8 years ago when I was 46 and in pretty darn good shape. I have an "office" job, lots of sitting, but some computer equipment moving. IVIG has been my savior, especially since I got on a set routine. I've done 5 days every 2 months, 4 days every month and for the past 2 years it is 3 days every 3 weeks. I have not stopped working and only miss time while in treatment, and I work from there via remote setup.
It can be done, it is NOT easy and you won't get any sympathy from anyone in the workforce.
2 things of note from my experience. 1. Obamacare saves the day, I know its unbelievable! The cost of IVIG would max out anyones insurance plan in about 5-6 years, and then you would be unable to work and have to go on early disability or medicare or who knows. So for me I dodged a big bullet when that passed in 2012 (I think).
2. My biggest problem working is concentration and short term memory caused by the other drugs used to treat CIDP. IVIG doesn't mess with your mind, but all the other pills certainly do, especially over time. I take a very light dose of Cymbalta and Lyrica to control nerve pain, but the fight against chronic fatigue is kicking my a$$.
I've also struggled with exercise and staying in decent shape. For us CIDP'ers working out costs a lot of spoons, and the next day or even two days is really bad. I keep trying to exercise regularly but its not like my muscles get stronger or my stamina greater, its just less spoons each time.
Ideally working in 3-4 hour increments, with a nap would be perfect, maybe toss in some exercise, then a nap....but bills must be paid.
Again, a set routine of IVIG was the key to me getting my strength back and being able to work a 8-9 hour day. Just don't expect to come home each night and conquer the world like normal working stiffs.
Hope this helps, it is a fight and a half and most of it is within yourself.
Maggie: Thinking of you and hope you get the help you need soon.
txangel922: Let us know how it goes. Drink lots of water.
Best wishes to you both.
txangel922 said:
Thanks for responding. I am so sorry to hear you are in limbo and unable to get the help you need. I like you really need to work and need the insurance of course, which my employer provides. I will keep yall posted and I hope that you will get the treatment you need soon. Take care of yourself.
Maggie said:I spent the past few months asking myself that same question! I can't get IVIG because our insurance carrier flat out denied it even though they acknowledged it was the best treatment for me.....how does that work?? My other option was IV prednosone(sp) and after much debate and many second opinions my doctors and I decided not to go that route.
But my symptoms are worsening and each day working is more difficult than the previous. I can't afford to quit working and have been advised that I would be declined for disability because there is treatment (the reasoning being if I had either treatment I could recover enough to continue working). I feel I'm in a "catch 22" and my neuro agrees. Sadly my doctors and I are hoping I get worse...enough of a crisis the IVIG will be covered, but not bad enough that I lose too much function or it can no longer help me.
My life has become all about work and rest. No social life. No other activities at all - my employer gets all my spoons. I work and go to bed. I can no longer drive. My husband gets up early so he can help me in and out of the shower, dry my hair for me and help me dress (buttons and zippers now elude me). 5 more years and I can retire at 62, but it's hard to imagine how I'll get there at this rate.
I pray the IVIG helps and you do well with it! I've heard it is a real miracle for some and life returns to "almost" normal. Let us know how you do with it!!
Maggie. Wow I’ve never heard of insurance denying what Dr. Recommended.
This is just my opinion but if it were me I would get a little nasty and TELL my Dr. to PRESCRIBE IVIG, Gammunax .4 on a set schedule right friggin now because if I get permanent nerve damage I’m coming after you legally.
IVIG is the only FDA approved treatment for CIDP on a permanent basis. “Hey Doc, Google it if you need to”.
Then tell your Dr to call the insurance company and get you more approved for the next 6 months. Insurance companies REQUIRE the Dr office make that call.
Then calm your Dr office every 6 hours and ask them if it is done yet.
If you live in the USA you can’t be denied.
If that fails go to emergency room at the hospital and get admitted and force your doctor into action.
Lastly. Consider a lawyer, a new doctor, and a visit to a respected teaching hospital so they can confirm you have CIDP.
Obamacare is a mess but use it if u have insurance.
Get nasty.
Appreciate your input. We did fight - for almost a solid year - my neuro went through peer reviews, wrote letters, filed appeals, as did we through our attorney.
My neuro is part of one of the most respected University hospitals in the nation - people come from around the world to see him. Took a year to get my first apt with him after I had 4 others completely stumped as to what was going on. He removed the sural nerve from my L ankle so there is no question about the diagnosis - But just to shore up our appeal I got two second opinions. We have been more than a little nasty and spent a great deal of money.
I have permanent nerve damage now and have lost the ability to move my right foot, L foot is following close behind.
I was a medical Social Worker at one point in life.....I've seen insurance companies repeatedly deny what doctors recommend. Not uncommon at all. Bottom line is they are intent on protecting their bottom line, never mind what the price is to the individual.
Maggie. Wow I've never heard of insurance denying what Dr. Recommended.
This is just my opinion but if it were me I would get a little nasty and TELL my Dr. to PRESCRIBE IVIG, Gammunax .4 on a set schedule right friggin now because if I get permanent nerve damage I'm coming after you legally.
IVIG is the only FDA approved treatment for CIDP on a permanent basis. "Hey Doc, Google it if you need to".
Then tell your Dr to call the insurance company and get you more approved for the next 6 months. Insurance companies REQUIRE the Dr office make that call.
Then calm your Dr office every 6 hours and ask them if it is done yet.
If you live in the USA you can't be denied.
If that fails go to emergency room at the hospital and get admitted and force your doctor into action.
Lastly. Consider a lawyer, a new doctor, and a visit to a respected teaching hospital so they can confirm you have CIDP.
Obamacare is a mess but use it if u have insurance.
Get nasty.
Well I have had my loading dose (4 days in a row) and one maintenance dose. EMG after the loading dose showed some improvement which is great.I had seen improvement in my gait but not much else. I have had increased pain and spasms and Nuero says it's the nerves healing. I have noticed after my maintenance dose some improvement in numbness. I am currently 17 days away from my next dose and I have been hurting and increased nerve pain,burning and muscle pain, as well as not being able to sleep. Not sure if it's a sign things improving or sign I need to increase frequency of doses. I meet a new nuero in 12 days due to my current one taking a new job in another area. So I guess I'll see. I don't think I ever said but I have mild demyelinating sensory motor axonal polyneuropathy and Mild bilateral median nueropathy at the wrist..Good luck you all and GOD bless you.