Venting b/c so frustrated with it all.
AnonymousJanuary 18, 2010 at 9:09 pm
Hi all, I apologize for venting. It has been a long time since I have posted anything here but I don’t know of anyone else who would understand my frustrations. I have CIDP and a family variant of an unknown strain of CMT. Anyway, I have been doing “ok” for the past few years. I have been dealing with this for 20 years now and it doesn’t get easier. I moved to another state after I recovered enough to walk again. I had to change doctors, of course, and there lies my problem. I am having a flare up and I went to the new neurologist and he told me it was probably my vitamin B. My lab work shows that the B vitamins are normal. They are totally “brushing” off my symptoms and act like I am “making it up.” OH yeah, I have spent the last 20 years in and out of wheelchairs and I guess I must have just imagined that. At least, that is the feeling I am getting. I have been relatively “ok” for 5 years now…no major flare up and not the wheelchair since being here. However, I know a flare up when I see it and I really believe that a dose or few of IVIG would help but my doctor isn’t even considering it or taking me seriously. BTW I have Kaiser HMO so I can’t just up and find another doctor. Any ideas on what I can do to handle this b/c I am just so physically exhausted and mentally drained. The exhaustion is a sign that things are only going to get worse before they get better and that scares me. My doctor acts like I am just making all of this up and isn’t doing a damn thing to help (excuse the language.) I am scared, tired, exhausted, and all the other things that come with CIDP. Thanks for letting me vent……I am sorry but no one else can possibly understand this except for those who have it.
January 18, 2010 at 10:52 pm
I would go to another neurologist at Kaiser and get a second opinion. If you have any medical records take them with you. If that doesn’t work try a neurologist out of the HMO network (get recomendations for one of the best doctors who knows CIDP). Then I think Kaiser would have to cover your medical expenses.
You might want to call the Kaiser Administration first and tell them of your long history with this disease and maybe they can get you to the right neurologist. Also Kaiser has been sued before, although they are a good HMO, but they are entirely wrong in your case and maybe you could talk to a good attorney who could start with a letterto get you treated.
These are just some ideas. I know there is help out there for you. Since I have not had this particular experience I hope some else on this site can offer better and more practical suggestions. Please Don’t give up.
My prayers and best wishes.
January 18, 2010 at 11:05 pm
Maybe you could just go to the er where your neurologist IS NOT on staff. Explain your history and beg to be admitted and administered ivig. At the very least, demand a spinal or ncv/emg. Have you just flat out tried going to your neuro and begging for ivig and explaining that you know your body and the signs of a flare. Has ivig helped you in the past? Could the charcott marie tooth be worsening? Are you moving towards a wheel chair again? If so, just show up at the er in the wheel chair. I understand your frustration, our first dx was a psych. dx, second was muscular dystrophy. the third doc was a charm!!! don’t give up as exhausted as you are. You are your best advocate.
Dawn Kevies mom
AnonymousJanuary 19, 2010 at 1:13 am
I hope you saved some old tests and results. Do you have your old neuro’s phone number to give to your new one? Anything to give them the information. Remember, and I would hate to think that this would be the case, but it might, CIDP can be quite expensive to treat. If they can blame it on something else like b-12 (cheap injection) they can get out very inexpensively.
It is very frustrating when someone “looks” OK, but you know that you are not. Don’t run and scream, but remain vigilant. You recognize a “flare”. You know what you have. You just need a little backing. Get thwe support you need and get these guys to cover you like they should.
By the Way…. Document, Document… Document. Keep records of all the correspondence they are sending you. Somewhere down the road, if you have a prblem, you might need toe documentation that you tried over and over and over again to inform inform inform. You do your part right.
By the way….. ***** away !!!!!!! It helps !!!
AnonymousJanuary 19, 2010 at 10:32 pm
Give your old doctor a call and explain that you need them to send the new doc some medical info about you. Explain that you feel that you need IVIG and the new doc needs to know how you have been medically treated in the past.
Hope that helps,
Rhonda from Canada
AnonymousJanuary 22, 2010 at 12:20 am
I remember you from a few years back.
Isn’t there any records you brought with you with your move to another state?
If not, it is easy to get your main records sent to you, from your old doc. jUST CALL THEM, AND THEY CAN SEND THEM TO YOU.
(Sorry you have Kaiser–I heard they were bad…)
If you had a good rapport with one of your past doctors, perhaps you could call that doc, and have him call this new idiot with what’s REALLY going on, and you know when a flare is coming on.
But, DO show up in a wheelchair your next visit–it will at least get his attention.
Hope things work out for you.
AnonymousJanuary 23, 2010 at 12:09 am
I wouldn’t waist another minute of your time and energy on this doctor. He is not worth it! Nothing will change him to be the type of doctor that you need.
Consider calling your old doctor and ask him if he knows of anyone in your new home town. He may have a colleague there. Also, he may be willing to look at who is on staff at Kaiser. Maybe a name will ring a bell with him.
One of my family members had a very bad problem with Kaiser. We found that they have a patient advocacy dept. I called and vented and did get help and another referral for this family member. Maybe you could call and explain your diagnosis and ask for a referral to someone with experience in CIDP. If they have no one, then they may have to pay to send you out of network. That’s where a name recommendation from your old doctor may come in handy.
Also, please don’t apologize for venting to us. I have done my share. The beauty of this site is that no one sits in judgment and we understand where you are in your life. I have received more help here then anywhere else! It feels like one big hug! I wish I could give you one in person.
Sometimes, this illness makes us feel so isolated. It’s nice to come here and know that there is understanding and caring. Please keep in touch. Let us know how you do with Kaiser. Don’t give up. Your life and the quality of care you receive is important to us all!
Feel free to write me anytime. Helping you, helps me!
Keep up the fight!
You must be logged in to reply to this topic.