Need questions answered about husband.

Hi chelle,

Sounds like he is having a flare up. I get all those symptoms and more. When I am trying to do too much and get tired, then the disease acts up, and the symptoms get worse. Sometimes the disease just acts up on its own, sadly.

One easy solution is to get more rest. It helps keep me from getting over tired.
I do a little, rest for a longer time, and repeat. Once I feel I am getting too weak, I am done for the day. Holidays can be tough, they demand a lot of energy.

Is your husband currently receiving treatment? I would think he should be, especially if he is getting worse. I’d call the neuro.

Chelle,

You don’t say what your husband’s treatments are, how he is doing on them, how long ago his last treatment was, and when his next treatment is scheduled. Since he’s been diagnosed since 2006 I guess he is being treated successfully and has been doing well with the treatments?

I’ve experienced all the symptoms you describe (except the mumbling) and I attribute them to CIDP.

I would advise starting with the neurologist since you know CIDP is an issue and may be (probably?) is the cause. And most general practictioners don’t seem to know much about CIDP, it symptoms, treatments, & etc. I pray you’ll find the answer quickly. Thanks for being there for your husband. Please keep us updated …

Gary

I would recommend you find yet another neurologist.

The more I hear about other people’s negative experiences with their neurologists makes me feel even more blessed with my neurologist.

That wasn’t always the case. My 1st neuro was arogant, dismissed the EMG nerve conduction results & lab conclusions, so blew my diagnosis and then wouldn’t listen to me when I relayed my decline.

My current neurologist listens, cares, and is actually one of my strongests advocates.

I pray y’all find such a neurologist.

Gary

Hi Chelle,
Where do you live? It takes a while to get into a neuro (usually). Your husband sounds like he is in a relapse, it sounds like a crisis. I would go to the er. Make sure it is not a hospital where either of the two neuros you saw are at. They will see it is a crisis situation. If you tell them about the cidp history it will make it that much easier to do the proper tests right off the bat for their diagnosis (spinal, nerve conduction emg) Were the other docs certain it was cidp? Ms is not a possibility? If you go to the er, they will r/o other possibilities. If possible, bring any old test results you have. You mentioned one dose of ivig and the doc stopping it because the one dose did not help. Firstly, how much did he get the first time, secondly, one dose does not always do it for everyone. In our case we went from not walking to running w/in hours, others on the site need several doses. You cannot stop after one. Not to get ahead of ourselves, but if after a few ivig courses there is no improvement, there are other options, ivig in conjunction with steroids, pp and ivig, or a variety of imunosuppressants. Some on the site are doing stem cell procedures at a hospital in Chicago with great results. My point is, that there is hope, if one plan does not work you can move to another.

You cannot wait, things can go south quickly! Keep us posted.

Hi Chelle,
Where do you live? It takes a while to get into a neuro (usually). Your husband sounds like he is in a relapse, it sounds like a crisis. I would go to the er. Make sure it is not a hospital where either of the two neuros you saw are at. They will see it is a crisis situation. If you tell them about the cidp history it will make it that much easier to do the proper tests right off the bat for their diagnosis (spinal, nerve conduction emg) Were the other docs certain it was cidp? Ms is not a possibility? If you go to the er, they will r/o other possibilities. If possible, bring any old test results you have. You mentioned one dose of ivig and the doc stopping it because the one dose did not help. Firstly, how much did he get the first time, secondly, one dose does not always do it for everyone. In our case we went from not walking to running w/in hours, others on the site need several doses. You cannot stop after one. Not to get ahead of ourselves, but if after a few ivig courses there is no improvement, there are other options, ivig in conjunction with steroids, pp and ivig, or a variety of imunosuppressants. Some on the site are doing stem cell procedures at a hospital in Chicago with great results. My point is, that there is hope, if one plan does not work you can move to another.

You cannot wait, things can go south quickly! Keep us posted.

I went untreated for years because I wasn’t “sick enough”! I want to know who sets the standards? If your quality of life is not what it used to be, then you ARE sick enough!!!!! 13 neurologist later, I found one that said that he didn’t want me getting sicker and started the treatment of IVIG! Within 3 weeks, I felt like super woman! Though the effects did npt last long, I know there is hope that with enough IVIG and finding the right dosage, I will feel like a functioning adult again. Don’t allow anyone to tell you he is not sick enough. You might bump a few heads and make a few enemies, but your priority is getting him treatment! If she did not think he was sick enough, find another neuro. As I said, I have been to more than 13 and went w/o treatments for almost 8 years! I was treated with Gabapentamin, Lyrica, Cymbalta, etc…… The docs will always try traditional RX’s before IVIG because of the cost/benefit ratio. If he was sick enough for IVIG, he is sick enough to explore another route. I tink plasma pheresis is the next step. I am not too sure. There are other members on this forum who’s IVIG didn’t take and moved to the next level. They can advise you better on that. My advice to you, get all the medical records and take them to another doctor for a 3rd, 4th, 5th opinion. Highlight the important facts on the medical records from the transcribed copies you receive and use that as your evidence/proof for the need of treatment. Good luck. Be strong.

[QUOTE=chelle]The only treatment is by medication: Dilantin 200 mg 2x day(for muscle cramps/spasms), Gabapentin (gen for neurotin) 1200mg 3x day. He had IVIG in 06 but had a reaction to them by the 3rd dose, he had a severe headache and fever they would not give any more afraid he would go into shock. We have seen 2 different neuro, the 1st one done the IVIG, but since it didn’t work all she would do was treat the symptoms. So we found a neuro that specializes in CIDP but now she says he is not bad enough for another route. The dr makes me feel like if he can walk and don’t need a ventalator then he is not bad enough. That makes me so mad, he is real bad considering what he could do before he got sick. I know that he will never be as strong as he was but it upsets me to see him in so much pain and so tired that he cannot enjoy any part of his life. He is also very self consious about everything, like not anyone else know how bad his weakness, memorylapses, etc is.[/QUOTE]

Chelle,
Everyone is different, so I cannot say what will happen to your husband. But we did go down fast. Once the weakness in legs and arms happened with tripping (took about 3 weeks) the next week was down hill in an instant. By the end of that last week we went from strained walking to not walking, difficulty breathing, urinating and constipation. We see our neuro every three months. In the begining when we were in a crisi it was every month. Your husband sounds like he is in or near a crisi situation. Is the er a possibility, or maybe another neuro? keep us posted.

It will give you and idea of what all has been going on and what to expect in the future. It will likely mean a lot more tests? But it is definitely worth the effort! Get an handle on things and go from there.
As for Gabapentin? It and I did not get along well at all. I tried 3 more of about 50 pn meds before I found one that worked for me… I can attest that the neurontin did cause for me, severe muscle spasms, as it can deplete a lot of calcium. Try taking a calcium citrate w/Vite D and magnesium combo and see if that helps. There are nutrition and vitamin shops that sell these and some are even reputable! Any web site that clearly posts the ‘ingredients’ is likely better than those who say ‘secret formula’ and make all sorts of claims for cures. Once I got off the neurontin/gabapentin onto another med and started the calcium combo the ‘tremors’ subsided greatly.
Before going to another doc? Get copies of past medical records ‘for your files’ and go see someone else. Be careful tho? Don’t bad-mouth a prior or current doc, just say: We aren’t connecting or communicating well. Leave it at that.
I hope this helps and that things don’t get worse! I for one, deal with that fear every day. But, as Dan says? THIS DOES NOT HAVE ME! Hope and good things soon!

Chelle I couldn’t remember if I sent you a private message about your question you asked me about. bUT IF YUR HUSBAND IS getting worst and none of your neuro’s will do anything about it then take him to the ER.

We had this same situation with our current local neuro. I kept calling and telling his nurse that Ryan was getting worst and she kept telling me she would talk to the doctor and call me back, when she would call back she would tell me I had to wait the 4 months for his scheduled appt.

well to say the least ryan got so bad within the first few weeks that he couldnt walk at all and was almost completley paralyzed. I took him to the ER and he was admitted. this started our search for a new neuro.

we still see our reg local neuro but we also see Dr Richard Lewis (who is on the board of this foundation and a university hospital neuro) he has got to be the best neuro for CIDP and he is very knowledgable about CIDP. He is in charge of Ryan’s treatments. he tells our reg local neuro what treatments to do for Ryan. had our local neuro not agreed to let Dr Lewis call the shots we would have found a new neuro.

We see our local neuro once a month and Dr Lewis once every 3 months as we have to travel 3 hours to Detroit to see Dr Lewis but it is well worth the travel.

Your current neuro should relaize there is no such thing as “not sick enough to get treatment” that just makes me angry. if he is getting worst then he needs treatment. Find a new neuro one who is very knowledgeable. my first question would be how many CIDP patients do you treat? if the answer is less than 20 keep searching. you will probably need to seek out a university hospital neuro they tend to treat more CIDP patients as they are research hospitals and hav emore time to spend with the CIDP patients and are more up to date with treatments.

Most people here in Michigan go to University of Michigan when the local doctors can’t figure out whats wrong with them. we were going to go there with Ryan but then found DR Richard Lewis who is at Wayne State University here in Michigan. we were a little worried at first cuz he wasnt out of U of M but once we meet Dr Lewis we knew he was one smart doctor.

Let me know how your hubby is doing I’ve been looking for your posts to see how he is doing.

Rhonda (Ryan’s mom)

[COLOR=black]Chelle,[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]From personal experience, I can tell you it is possible to go from walking (not properly, but well enough that most people would have no clue that something was wrong) to effectively paralyzed within 2 days with CIDP.[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]As far as how often to see your neurologist, it depends on the level of crisis. I now see my neurologist every 3 months or so, but my symptoms are well controlled. While we were getting things under control, though, I saw him once a month. At least a couple of times, when things were rapidly declining, I just dropped in and asked to see him as soon as possible.[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]By the way, a severe headache and fever from IVIg is not an uncommon reaction. It can be related to infusion rate, brand of IVIg, and several other factors. It would be worth trying again. If you decide to do so, make sure he is well hydrated, and I mean to the point of needing to urinate every hour or so. As a typical part of the protocol, my infusion center gives people Tylenol and Benadryl before the infusion starts. The infusion is started at a low rate, 50 ml/hr, and then ramped up by 50 ml/hr every 15 minutes or so. Find out what the infusion rate was the last time he had it and make sure the maximum rate is 50 ml/hr below that. If he still gets a severe headache and fever, try switching brands.[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]It is possible doing all that may still leave him with headache and fever. The question is then are those side effects worth it? If he gains significant relief from the other symptoms, then perhaps they are. If IVIg really does not work, there are other options. Encourage your neurologist to explore them.[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]Godspeed in finding an effective treatment,[/COLOR]
[COLOR=black]MarkEns[/COLOR]

Chelle, I can’t remember if you or anyone else mentioned prednisone, but that is standard treatment for CIDP either with IVig or afterward if IVig doesn’t work. And then there are other options if neither of those drugs work. I failed IVig and pred. — now on cellcept (mycophenalate mofetil), and the jury is still out on that. There are others such as imuran that can be tried, as well as rituxan. The point is, it doesn’t sound like they are doing much to treat the disease. Go somewhere else…there are neuros who know how to treat CIDP and will work with you. Just be (nicely) persistent!

Best of luck, and keep us posted.
Sharon

Hello chelle,

Be very careful when you consider what “somebody” said, ‘and a co-worker told me now that he is on medicare that it will be harder to find a neuro bc he will need referrals. ‘

I’m on medicare. I don’t need any referrals.

It is somewhat important that you undertand your medical coverage, in detail. Get your Medical Plan Summary documents and study them.

As some others here have stated, GaryO and homeagain, for example, you’ll have to find what meds work. I also quit using prescription meds. I prefer fish oil, broad spectrum magnesium and a good B-vitamin complex.

As for fatigue, yes, I have that. I take naps when I need to. Mumbling? My wife says I did prior to my first few months of IVIG. Doing much- I haven’t done much for years. So, I focus on what I can do.