That’s the problem with some nurses…they think they should be diagnosing patients. (I’ve had the same problem with a nurse too)

If your symptoms have progressively gotten worse than it sounds more like CIDP. You should really start a treatment program ASAP. The longer you wait the more damage that is done.

Personally, I think oral steroids are more of a concern that IVIG. Depending on what other health issues you have, you could also talk to your dr about doing plasmapheresis instead of IVIG or steroids. I stand behind IVIG as the optimum treatment option as it has helped my daughter tremendously.

Kelly

[QUOTE=Liftyourhands7]I was told by a nurse …What if I just wait this out, could it heal on it’s own? I’m a little afraid to do IVIG because I’m not in the best health, however all this numbness is pretty painful.I don’t know just need some reassurance that if I do have to have IVIG, that it will be safe. Is there other treatments that I can use instead like cortisteroids? I have an apt. At UCLA on the 9th, for those of you out there that pray, I need the Lord to give knowledge and guidance to my Doctors and I really appreciate your prayers and all of your knowledge. Thanks so much, Jan[/QUOTE]

A nurse?? OK that’s just her opinion. Please remember she is not a doctor and no test have been done yet [or have they?]. IVIG is as safe for most people. Some do have a reaction to it. One important thing is to remember to drink plenty of water the day before. Hopefully the 9th is the 9th of Nov.

I would not recommend a “wait and see” approach. The problem is if it is CIDP the longer you wait the worst the damage is. I’m not a doctor, but I’ve been bless with this gift of CIDP from at least 2005. For me it has been the gift that keeps on giving. The IVIG has helped slow the advance. Keep in mind that each person seems to have their own experience. Hopefully you may not go down the same path. Many have been treated and gone into remission for years others…

I believe there used to be a forum member who only received plasmapheresis treatments as nothing else worked for him.

For the life of me I cannot remember who it is though. UGH…so frustrating. It will probably come to me at 4 o’clock in the morning.

Kelly

Dear Jan,
I understand your feelings, and will pray for you. Many of us have had similar experience with doctors. I’m glad that at least testing is now in the process, and will pray for right decisions and helpful results in your treatment.
God bless and keep you!

Make sure you get a spinal tap, that is what finally gave me the right diagnosis. But, be sure to stay LAYING FLAT for 6 hours afterward, do not even lift your head if possible. Or you get a horrible headache. Nerve conduction tests are fun too! And help diagnose, but if you have too many proteins in your spinal fluid, that is what tells you it’s CIDP.
Best to you, God bless you! 🙂
Wendy

OH… where were you when I had my spinal tap in June Wendy–lol…..I REALLY could have used that info. After my spinal i had other appts at Mayo so continued on my way shortlly after. i got the worst headache that evening that i have ever had in my life, followed by vertigo. both which lasted over a week. 🙁 So YES if having a spinal follow your advice is great!!!!!
I guess also that “women who are still of menstuating age” have a lot higher rate of headaches due to hormones (this was me)—-but that leaves you GUYS off the hook and a less risk of the horrible headache. Lori

I would ask for your Dr to start the ivig as soon a spossible if i were you. Its the safest treatment with the least side effects.
Stress and anxiety can worsen the symptoms of cidp. So even having to worry about your treatments etc adds to the stress.
I have found that having a plan helps me cope with all of this. Be very open with your dr. ask him/her whats next? what if that doesnt work? how long should i give it? I write down all my questions prior and discuss them right off the beginning of my appt.
plus knowing what you will try next if one thing isnt working will give you time to research it, ask others experiences etc–let your Dr know this.
i also share with my dr what has been successful for others from here. Example she told me “that if ivig doesnt work then plasma exchange wont either” I told her there have been several members who have had great luck with pe after ivig failed.— My next step if ivig fails is now pe.
Finding a dr who listens to you and respects your suggestions is so important with this disease. even if they need to send you other places to get a diagnosis or testing—you can do that and still keep the same dr. good luck with your upcoming appointment, i hope you find answers—and dont leave until you have a treatment plan in place 🙂 it will help with the stress!! Lori

I would ask for your Dr to start the ivig as soon a spossible if i were you. Its the safest treatment with the least side effects.
Stress and anxiety can worsen the symptoms of cidp. So even having to worry about your treatments etc adds to the stress.
I have found that having a plan helps me cope with all of this. Be very open with your dr. ask him/her whats next? what if that doesnt work? how long should i give it? I write down all my questions prior and discuss them right off the beginning of my appt.
plus knowing what you will try next if one thing isnt working will give you time to research it, ask others experiences etc–let your Dr know this.
i also share with my dr what has been successful for others from here. Example she told me “that if ivig doesnt work then plasma exchange wont either” I told her there have been several members who have had great luck with pe after ivig failed.— My next step if ivig fails is now pe.
Finding a dr who listens to you and respects your suggestions is so important with this disease. even if they need to send you other places to get a diagnosis or testing—you can do that and still keep the same dr. good luck with your upcoming appointment, i hope you find answers—and dont leave until you have a treatment plan in place 🙂 it will help with the stress!! Lori

Hi – After many years of knowing ‘something’ was not right and numerous trips to GPs, Neuro’s, & second opinions (one neuro was so frustrated with my – its gotta be something! questions she said ‘I’ve told you all I know!’). I knew it was ‘something’ but never once for many years was GBS or CIDP mentioned.

I finally had a total neuro lock-up and was admitted to the hospital – slow but sure I regained about 50% feeling and mobility and appeared I was getting ‘better’ from whatever it was. I still knew it was ‘something’.

One night a nurse came to my room and asked how I was doing and glanced at my chart … asked a few questions and in less than 5 seconds she asked me if I ever heard of Guillain Barrre’ – I told her it sounded like a guy who played linebacker for the Green Bay Packers in the 1930’s. She laughed and said she’d make a note in my chart for my doctor to look at. She did and my doctor said ‘I think she’s on to something’ and he pursued it with vigor and a final diagnosis of CIDP.

A gentleman from the GBS Foundation left me the Overview Booklet and upon reading it – I was amazed that everything I was trying to describe to the doctors for years was right there – kind of like reading a book about a place I visited on vacation and was very familiar to me. It was indeed the ‘something’ I knew I had.

I was put on plamaphersis by my now dual neuros’ – only much later did I learn that research indicated IVIG should have been the first treatment and they really weren’t communicating with each other anyway. Plasmaphersis did not work (for me); I was ‘doctored out’ and just went home to deal with it best I could. After about 4 years of that – and knowing my neuro would prescribe IVIG if I asked – I did. It took another 8 agonizing months to get my insurance company to acknowledge coverage – I was a wreck by then.

I began the IVIG standard loading dose and after 3 treatments (days) I could feel my hair and the wind on my skin – though late in the game it worked on me – and twelve years later still does. If I had been diagnosed early on and given the proper initial treatment, I believe I would be in better condition today.

The nurse, who I never got a chance to say ‘Thank You’ to, was spot on in seconds! While I certainly don’t recommend nurses giving final diagnoses, they see this stuff on a more regular basis when dealing with patients and should be at least listened to. Maybe this nurse ‘did it the right way’ by jotting that simple note in my chart and maybe I was fortunate to have a doctor who was willing to consider her opinion – who knows.

I always talk to my nurses and find most to be a very good resource. God Bless Them All –

Good luck at your appt. Jan. Let us know how it goes please.
Laurel

Based on what I have read here on this Forum, recurring GBS is essentially CIDP. GBS is the acute version and you can continue to have residuals for years afterwards. It is uncommon for GBS to reoccur. It can, but it is not common. If you are having weakness problems, that sounds more to me like CIDP, but it is possible that maybe you are having another issue, not CIDP. It seems like it takes people a long time to get diagnosed. Have you had a spinal tap? At least your neuro is being proactive, so that is good. I did not have that, and never received IVIG, which I think was to my detriment, but I will never know. You might want to read up on this forum and google, maybe get a second opinion from another neuro.

[COLOR=black]Hello Magicalmusical,[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]Welcome to our band, although we are all sorry yet another person must be here.[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]There are purely motor variants of CIDP and some of those can have asymmetrical presentations. If you have no sensory problems, then you might have a motor variant. The pain might not be a sensory issue in the typical sense, but a result of the motor issues.[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]Calling it recurring GBS is a bit inaccurate, I think. There is a category of disease between GBS and CIDP. Perhaps your neurologist is using “recurring GBS” as shorthand for that category. He probably does not want to make a CIDP diagnosis just yet because it implies something that probably won’t resolve in a short time, if at all, and he does not want to cause you undue alarm. [/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]Regardless of what he calls it, it looks like he is treating you according to standard protocols. The good news, if there is such a thing here, is that motor variants typically respond well to treatment. Keep up with your treatments. A written log of symptoms from day to day might help you determine when things are changing for the worse. Then you and neurologist will be able to adjust the dose/frequency to keep things in check.[/COLOR]
[COLOR=black] [/COLOR]
[COLOR=black]Godspeed that the treatment will be effective,[/COLOR]
[COLOR=black]MarkEns[/COLOR]

I agree that notes can be a helpful tool to track symptoms. When my symptom notes became too complicated, I made a chart/graph. After much thought I narrowed my symptoms down to five that were ‘real to me’ and were measurable on a scale of 1-5. To keep it simple I did it twice a day – AM & PM. Sometimes there just wasn’t a number, so I just guessed. Eventually a pattern did emerge and I was better able to adjust my day to my abilities. Other patterns became apparent as well and I began to ‘understand in my own language’. The five I chart are: Mobility, Discomfort, Strength, Inflammation, and Numbness. It took me a very long time to come up with these ~ for instance, no one ever asked me about ‘discomfort’ ~ but that’s what “I” was really feeling and I was then better able to describe ‘it’ to my doctor, nurses, family & etc. I don’t trot out the chart and show it around expecting folks to ‘understand’.

I do take other notes as well, lots of them, but they are primarily about the ‘business’ side of CIDP (insurance issues, other stuff…). I wish you all well and a speedy total re-recovery. I often call my CIDP “constant GBS”; makes sense to me.