Warning, big vent

    • Anonymous
      January 13, 2009 at 11:52 am

      I just need to vent.
      I got a cold. When I get a cold I get in a ton of pain…even the biggies like neurontin can’t help. My muscles twitch and contract and I tingle so badly that I can’t walk or move my body. I could barely eat this weekend as my throat would contract so I couldn’t breathe whenever I swallowed. Last time I saw th ER drs for that they told me to drink hot liquids.It is scary when your muscles don’t work to breathe and that is the best help they could give me.
      I just called the neuro, he’s on vacation and they tell me to call my primary Dr instaed. I know he can’t do squat for me.

      Then we just got billed for my last trial dose of IVIg. The insurance company decided not to pay for that dose even though they pre-approved us. The problem has arisen that they will discontinue paying for any IVIg starting in May 2009 an somehow that is affecting payment on my Dec IV. They are looking into “grandfathering” that dosage…whatever that means.

      I am frustrated as I totally got rid of my 24/7 pain/twitches by raising my T3 levels, but the pulse dose steroids this summer dumped my T3 level too low (but still in normal range). So I know I have something that could potentially help me, but the endo won’t let me increase my dosage.

      I am getting ready to switch to an alternative Dr as at least I could get more thyroid hormone. Perhaps I’d at least be out of pain.
      Sorry just had to vent.

    • Anonymous
      January 13, 2009 at 3:53 pm

      Hi Kristen.

      I dont know how they can “grandfather” not to pay your ivig. And, since it was pre-approved, you should appeal it. Call the insurance and let ’em have it.:mad:

      I dont have much time right now but I do hope you are feeling better soon and dont apologize for venting. That’s why we’re here.

      Feel better soon…

      hang in there, tomorrow is another day.

      well wishes,

    • Anonymous
      January 13, 2009 at 5:07 pm

      Oh dear Kristen! I certainly hope you start feeling better soon. I would indeed call the insurance company and have them explain what the grandfather means so you can be prepared to make some kind of arrangements when you need to have this done again. Bless your heart!
      You have every right to vent and I certainly understand. You go ahead and vent all you want. You have every right too!
      I would be mad, angry, upset and no telling what else. Hope the next few days improve for you! Wishing you well again! Hugs
      Linda H

    • Anonymous
      January 13, 2009 at 5:30 pm

      Kristin, I’m soo sorry you are having these problems. You really just need to try to get feeling better before dealing with the insurance co. You need all your energy for yourself. Don’t worry about the grandfather clause they can’t use that. Hope you get feeling better soon. Please feel free to vent on here about anything and everything, we understand, no need to apologize either! Take care.

    • January 13, 2009 at 6:10 pm

      Maybe you could try contacting Chris Mcfalls at the magazine IG Living. You can access it on line. She has helped other patients get ivig when the insurance denied them. Maybe she can offer you some assistance. If you are able to get things out, if you are not already using gammaguard, maybe you could switch. They have a program where you sign up and for every so much that you use, they will sort of bank it if you will and keep tabs on what you use by filling out info. If your insurance should ever gap, they give you a certain amount of ivig free based on what you used while having insurance. The program is called Gammassist-one word. Or call Baxter in Deerfield Illinois and they can hook you up. Stay strong and good luck.
      Dawn Kevies mom

    • Anonymous
      January 14, 2009 at 11:40 am

      Well some better news at the moment. We contacted our clinics IVIg specialist who deals with the insurance companies. They said that I will be covered for this last dose. The Ins co changed their rules on IVIg after I started IVIg but they never sent us a letter. The clinic said that we should be covered in the future if my condition warrants IVIg usage, but they did say that they have not seen anything about the discontinuing of coverage for IVIg as of May 2009. So now we are waiting to get info on this from the ins co.

      My hands have gotten weaker since I got this cold. I am hoping that the extreme muscle pain/contractions/muscle fatigue is causing that and not a resurgance of the disease. We rescheduled an appt with the neuro for next week so he can re-evaluate me. Unfortunately this will be the same appt that determines whether or not the IVIg was working. I am afraid that since I have now been wiped out by this cold and gotten weaker that he will say that it didn’t work and discontinue them. I do believe that they worked as I could do things with my hands for the first time since I got hit last spring. I could also walk quite a bit without my cane.

      Thanks for the support. Going to go under some covers as we havent had heat since last night and it is only -5 outside right now.

    • January 14, 2009 at 11:51 am

      The first time my son had a cold and symptoms intensified, I was a basket case. Because he was 11, now 12, it took some time to correctly communicate and differenciate between cidp weaknes and his cold. I was in a panic and wanted his treatment sooner. We went to the neuro and he did the typical assesment and everything was fine. He was weaker, but not in stregnth. He is sick again and this time we are both dealing with it better. It took about a month to get back the good feeling after his cold, but then he was back to feeling good. Good luck and hope you feel better soon.
      Dawn Kevies mom

    • Anonymous
      January 27, 2009 at 1:14 pm

      Hi Kristin, vent vent and vent…this is the place to do it…and its good for the soul..just wanted to let you know that I got phemonia over the holidays after being told not to be with any one that was ill (right and how is that suppose to happen)and it was like I got hit by a mac truck the feet are still tingling and I havent had that happen for a long time and if you add stress to the mix your going to add fuel to the fire and thats not good its easy to say dont stress out but you well and that is the greatest enemy that people with cidp have the unseen enemy.. so try and find that happy place and try not to worry so much I know that its hard, but hold on and it well get better and tell the stress monster to find someone else to bug Take care and hope you feel better Brenda;)

    • Anonymous
      January 27, 2009 at 11:19 pm

      Kristin, Let your dr know what you have been experiencing, the good the bad and so on. He will go by what you tell him. If the ivig was helping, let him know that. Even a little good is a big good when it comes to treatments. Little steps forward beat big leaps backwards.

    • Anonymous
      January 28, 2009 at 1:28 pm

      I saw the neuro last week. This Dr visit was to determine whether or not the IVIg was working (ie I would be stronger/improved than 4 months ago) and then determine whether to continue…and if not I’d get set out in the wind until the next episode. I was/am frustrated as the cold really knocked me down hard and made me weak and fatigued and in intense pain (for the first time in a year). I haven’t had a cold this bad for many, many years. I got rid of the intense pain my taking iadoral.
      My walking is much improved from fall. I still use a cane although I walk without it. The Dr commented that my walking was better. Yeah!!!! BUT, my hands lost a huge amount of strength due to the cold. Even my right one is as skeletal as the left, something it was not before the cold. The Dr did all his tests, and said overall I was weaker than this past fall despite my better walking. Darn that cold…darn, darn, darn. Then the Dr shocked me and said that he is convinced more than ever that I have CIDP due to my becoming weaker (remember I have all the history and all the symptoms but tests come back negative). He said that we will try 3 more months of IVIg. Yeah! Hopefully I can get the same lot of material I had last time that gave me the greatest benefit…although they can’t assure me that they have more of that lot.
      We have talked to the insurance co some more. They keep on telling us that they won’t pay for Dec. IVIg and anything more. They still haven’t mailed us the letter they keep quoting from either abt the new May 2009 rule. The neurology clinic has talked to them and has assured us that the insurance co. will be paying. So I am crossing my fingers that this is true. I get the first of these last 3 doses on Monday.
      So the cold has knocked me down, and really affected my hands…but due to being knocked down my Dr has become convinced than ever that I have CIDP. I am going to pray that these last 3 doses of IVIg give us enough info for the Dr to make a formal decision (and then I would have an IVIg regime).

    • Anonymous
      January 28, 2009 at 5:25 pm

      What tests did the neuro do to determine that you had CIDP? Just because you are weaker does not mean this. I had a cold two weeks ago and I had to revert back to a walker for a couple days as my legs were wobbly and my tingling increased. Within a week, these symptoms stabalized and I am back to pre cold abilities.

    • Anonymous
      January 28, 2009 at 6:23 pm

      [QUOTE=Carolmlee]What tests did the neuro do to determine that you had CIDP? Just because you are weaker does not mean this. [/QUOTE]

      Yes, I know. I have a 13 year history with symptoms and effects that scream CIDP. My Dr has other CIDP patients and he has spent years doing research on it, so either I trust what he has to say or listen to all the other Dr’s who said nothing was wrong with me and that it was “all in my head”. Unfortunately I am one of the 20% or so that do not have a positive lumbar. My EMG was also inconclusive but that is also not unknown. So now we are going the route of seeing whether or not IVIg works…and I had a few positive results with that which unfortunately got wiped out with the cold…but if I get positive results again…that will make the final diagnosis.

    • January 28, 2009 at 6:47 pm

      Hi Kristin,
      That is pretty much how we r/o gbs vs cidp. Each time, ivig would help. It sounds like you are on your way to getting things in order. Good luck.
      Dawn Kevies mom

    • Anonymous
      January 28, 2009 at 6:53 pm

      I can see where a diagnosis of CIDP from symptoms alone would beg for more questions. My wife had a deep muscle biopsy that revealed the fried nerves and zero re-growth confirming CIDP, and spinal fluid test that confirmed Polymiocitis.

      The doctor sent the test results to the insurance company and we have not encountered any questioning since (been about 5 years). If the insurance company is second guessing your diagnosis you may consider putting it to rest once and for all.