Now What?? Not CIDP

Ms. Judy

Please ignore my other post about neuro.

I didn’t see this message until after I posted the last one.

Is it possible to get a copy of all your other tests from 1st neuro and give to new neuro?

Hopefully the new docs can give you some answers if not CIDP then what?

Try to smile each day…give you less wrinkles then frowning 😀

Take care,

Rhonda from Canada

Ms. Judy,

This must absolutely knock you for a loop. I assume your previous neuro did the nerve velocity conductivity and the EMG. That should have been definitive. Please keep us posted. I am very curious to know what your new neuro thinks you have. Maybe a third opinion is in order??

Good luck, Ms. Judy.

Sharon

Ms. Judy, Good luck trying to get a diagnosis. I know how frustrating that is! I was told “mild” GBS, but I think the doctors were and are stumped. I am going to a rheumatologist soon to try this angle.

One other thing I was thinking about yesterday was that I have noticed that there are several teachers on here. I was wondering if because you are bombarded by all kinds of children’s illnesses/viruses, if this causes these autoimmune diseases because your body is constantly trying to fight these things off. I do know a lot of teachers who don’t have these issues, but it just crossed my mind.

[QUOTE=ms. judy]Rhonda,
I did take all that I had with me, and I told them I had previous records but they did not want them?? They said they would rather
start fresh???. I really don’t get it. [COLOR=”Blue”]That makes no sense! Why would you want to re do tests/procedures if they already proved an illness? Sounds like a way to scam more money to me!!!???? :confused: [/COLOR]

And so sorry I got it wrong,
I was on 95 grams of gammaguard through IVIG treatment which
took about 7 hrs. to complete. [COLOR=”blue”] about the same as me!;) [/COLOR]

The biggest question I have is could
I have had CIDP and the treatments made it go away??? [COLOR=”blue”]That is a possiblitiy that your nerves are rehealing and that you don’t have the same symptoms. Do you have any pain? How do you feel?[/COLOR]

I am calling my old neuro today and will request records sent. Thank you [COLOR=”blue”]Can they recommend a neuro that is covered by your health insurance? [/COLOR]

I still feel like I don’t know much even though I do keep up with
your threads. [COLOR=”blue”]Keep reading and asking questions, that is how I am learning as well![/COLOR]

I go back to see the new guy in Aug. [COLOR=”blue”]Is he familiar with CIDP? If not you still have time to find someone that you feel more comfortable with…you need to work as a team with your medical doctors. That is the only way to go! If you are dreading to go see a doctor you will cause stress and discomfort and that is not right![/COLOR]

Now I think they must think I really am a quack!!! [COLOR=”blue”]Who cares what they think!!! As long as you feel comfortable that they know what they are doing. If not find someone else![/COLOR]

I think Elmo and I are twins.[/QUOTE]

[COLOR=”blue”]Keep your chin up and keep looking for answers. Never give up

Rhonda from Canada![/COLOR]

ms. judy,

Yes, I could say my case is similar. Although the big difference is, I didn’t get a diagnosis until last year. Consequently, I was ineligible for some studies because i did not have a cidp diagnosis.

I suggest you read these links. Yes, they are long and complicated, but they might help you understand what we are up against.

http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

I refer to this part of the above link- “Unfortunately, because of the lack of clarity with regard to diagnostic criteria for CIDP, many patients remain untreated.”

The two sentences below excerpted from this link really sum up the problem:

http://www.ncbi.nlm.nih.gov/pubmed/12707417

“Therefore, although patients may not meet the diagnostic criteria for inclusion in clinical trials of CIDP, they may still benefit from current and future treatments used in CIDP.”

What does it all mean? There’s lots of things you could have. You might not even meet the strict defined criteria for a diagnosis of CIDP. As I recall, the criteria scores fall into three categories-
1. Yes, you’ve got CIDP.
2. Well, you’ve probably got CIDP.
3. Uh, gee, you’ve possibly got CIDP. SO, I SAY REFER TO THE ABOVE “..may still benefit…”

And then there’s this:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117406/pdf/114.pdf

How is my case similar to yours?
1. A major clinic location said I did not have CIDP.
2. An MDA specialist was willing, and did, prescribe a course of IVIG for me and then, after 5 months stopped the treatment.
3. A second major medical clinic (Mayo) suggested my previous infusion was neither strong enough nor given often enough.

What’s the bottom line? After a 9 month gap I restarted IVIG and although there is no “whoop de do” recovery, I am no longer declining and grip strength in both hands has, and continues, to improve. The current course of treatment extends the previous 6 months’ infusions by an additional 12 months with the addition of an anti-rejection agent, Imuran.

It is not easy to decide what to do. But, we all need to keep learning and keep fighting and keep finding the best doctors we can. Good luck.

Ms. Judy, I think I would try to get an appointment at KU Med Center in Kansas City, Kansas. They are part of the excellence program with the foundation. I realize it is 165-170 miles to KC and the Med Center is just across the state line by about 8 miles at 18th street and Southwest Trafficway, but they teach doctors about these diseases and when I called them they referred me to the U of Texas Health Science Center. I was 340 miles closer to U of T. I am very familiar with KU, after all I am a KU grad.
God Bless.

Miss Judy, good luck to you with this neuro. We’ll keep you in our prayers and God Bless.

I recently finished 7 every other month treatments with IGG, with no improve-
ment in my balance, or ability to walk. However, the problems have not pro-
gressed. It has been recommended, that I go to a big city treatment center
for further evaluation, and possible physical therapy, because my neurologist
is not sure, that something else might be going on, since I did not respond
positively to the IGG treatments. My main problem now, is mild pain in the
upper thigh,that keeps me awake at night. Over the counter meds do not
touch it, and tramadol, that I take for pain, causes swelling in my feet, and
other side effects. It is also not recommended for long term use, and I have
been using it for about three months. I was diagnosed with CIDP a year and
a half ago, but get little information about symptoms, and what to expect.
I don’t know, if the upper leg pain is from the neuropathy, or totally unre-
lated. I get the strong feeling, that doctors don’t know much about CIDP.
In fact, one doctor told me, that there is not usually pain associated with
my condition. Yet, many people on the forum talk of significant pain. I was
in excellent health, until this problem with balance, and walking, and lack of
sleep for the past three months has been a significant problem. I also had
periods of serious day time pain, but it gradually went away, leaving me with
pain, that goes away, when I sit up for a few minutes, but comes back after
awhile, when I lie back down. X-rays, and an MRI show nothing wrong. It is
very frustrating, as there has to be a reason for pain.