Be careful about lumping together……..

Hi Dick,
When I read that you said you have tinnitus and it’s not related to your CIDP you made me think about my tinnitus which I have had since my first attack approx 6 years ago – I actually haven’t mentioned it to my Doc’s as I just assumed that it was to do with my CIDP.
Very interesting!!
Best wishes,
Kazza

Hello Dick,

I am not sure tinnitus might not be a symptom in someone who has cranial nerve involvement. The auditory nerve is a peripheral nerve, so it might be affected by CIDP and could therefore lead to tinnitus. That said, I agree with you that in most cases, mine included (I have both tinnitus and cranial nerve involvement), tinnitus is not a symptom of CIDP.

MarkEns

The last nerve conductivity test indicated that I had Carpal tunnel Syndrome. Thank goodness, my neuro reviewed the results and told me it just part of my ongoing CIDP. I hate to think what would have happened if a slice and dice type got the report.

Bottom line is that some doctors my confuse Carpal tunnel Syndrome with CIDP [at least in my case]. I believe it a question of which fingers are effected.

[QUOTE=Dick S]Jim,

I agree about the slice and cut Dr. In a demyelinating neuropathy, the nerve will become inflamed where there is damage. If there is damage on the nerve that goes through those small openings in the wrist, symptoms would be so similar.

Once again, same symptoms, different cause.

It is awfully difficult sometimes to “split the hairs”, that is also why a diagnosis of CIDP is often difficult to coirrectly get. Imagine the “wrong” neuro, seeing the capral tunnel-like symptoms, do the surgery, and wonder why it didn’t go away? OOPS

Have a great day.[/QUOTE]
Well my husband had the “wrong” neuro in the beginning, and was sliced and diced with the diagnosis of carpal tunnel. Had the surgery in 2003, the surgeon looked at him six months later as hubby’s hand was atrophying and said it took time for the nerves to re-grow on their pathways, saw the original neuro again in 2005 who poo poo’ed his hand arm atrophy, went to a specialist referral clinic and the doctor their within five minutes recognized this ain’t carpal tunnel, referred him back to the original neuro who then referred him to a neuromuscular disease unit neuro. In the meantime, he wound up with irreparable atrophy and dysfunction, drop foot, nerves in the opposite hand weakening etc. etc. I grind my teeth just looking back at all the incompetence and the damage done. And the neuro who follows him now asked if he wanted to go back to the original neuro. for treatment after she made the diagnosis of CIDP. A loudly voiced,”NO!” was his response.

When hubby was getting IVIG last week, we met a young fellow getting IVIG for Polymysositis. Said he had repeatedly gone to doctors who couldn’t tell him what was wrong, but he was so weak he could hardly walk. He researched his symptoms on the internet and concluded he might have Polymysositis, took the print out to his doctor, she did some tests, and called him. Said to him, “I need to see you on Monday. If you have any trouble breathing over the weekend, go to the emergency room. On second thought meet me an the hospital in an hour”. He went into respiratory distress shortly after arriving at the hospital. The poor bugger diagnosed himself. A true but sad story.
Laurel

[QUOTE=Dick S]laurel,

One Dr. said to me, “When you hear the sound of elephants, you don’t look for a gazelle.”

That neuro heard the sound of carpal tunnel and didn’t look elsewhere.

ith the incidence rate of 1 or 2 per 100,000, most Dr.’s or Neuro’s don’t look at CIDP first. I just changed neuro’s (for convenience not incompetence) and told him what I had, and handed him three years of diagnostic test results for his file. He still did heavy metal’s testing, and diabetes testing, and B-12 defeciency testing. He drew blood, and I didn’t ask why.

The next meeting I asked him why, and he said he was just looking to see if they missed something. OK fine, but he just slammed the ins. company, and me a little bit for tests that were not necessary.

I told him it was a gazelle, and he went looking for elephants. I told him to call my previous neuro, and quit running useless tests.

I guess we all have our battles to fight with the medical community. One thing that is for sure….. Doctors are just as human as we are. Yes, they have quite a bit of specialized knowledge, but they don’t live with us 24/7. It is up to us to provide the information they need. And it is up to us to keep yheir feet to the fire to get our answers correct.

I am so sorry for your husband’s trials and tribulations. I hope he, and you, stay informed and keep those Dr.s working FOR you.

Take Care
Dick S[/QUOTE]
Thanks Dick. One thing that I often wonder about is how many undiagnosed CIDP patients are out there. When my husband had his initial EMG nerve conduction testing, they tested only his right arm and diagnosed carpal tunnel. I would think it should be standard operating procedure to test all four limbs. I think if hubby had all four limbs tested they may have found the gazelle instead of the elephant. When he finally got to the neuromuscular disease unit, they checked for the gazelle and found it.
Laurel

Laurel,
I agree with you, testing is necessary. If our current doc had not re-ordered the ncv/emg, and added a l/p, we might still be thinking Kevin was either nuts, as the first doc said or cmt as the second doc said. I beleive the additional blood tests Dick had also were given to us and in my opinion valuable as to definiteley r/o heavy metals, lymes, etc. The b-12 test was good because a low b-12 could be a contributor to the weakness from cidp.

MANY on this sight have had the carpal tunnel dx followed by surgery with no results until later a cidp dx was made. A very good friend of mine on this sight was dx w/plantar faschia tend. and sent home hobbling for a good while. Things got worse, she went back to the doc, was dx w/ cidp and ivig has taken care of the plantar faschia. It makes me wonder how many out there dx with these particular conditions actually have some form of cidp? It seems like many originally dx with other issues (at least on this sight) start their journey with some sort of inflamatory issue.

We have paid $20000 a year for 14 years or so, pre cidp for Kevin, thats just how much our plan costs. As do many others. So, now we are sick, thats what they insured us for. It’s a crap shoot for us if we will ever need it and still have to pay and for them as well, should we ever have an expensive illness. I guess they lost with us. SOOOO……I do not feel guilty when tests are ordered. Any big tests have to be approved, so if it is not necessary, beleive me they will not approve . If our doc and myself agree that a test is necessary to improve Kevin’s health or aid in his dx., I am there what ever cost!

On a lighter note, you have been a great caregiver to your husband, I hope he knows how lucky he is!!!

Dawn Kevies mom

I’m bring this forward because it ties into the ongoing discussion about carpal tunnel and CIDP

thanks Jim.

Like I have said, I am going to a new neuro on the 19th b/c mine…whom I’ve had so much faith in…has me in a wait and see mode. Not sure I agree with it. I never got a second opinion so this cant hurt regardless.

I have all of my medical records. I recently received the notes from the last three office visits. While I cant go into what they say right now…b/c I’m at work:eek: and they are at home…I”m going to talk about what they say.

I hope to never ever ever ever….you get my point here…never have to have another spinal tap.

thanks for all the info.

Stacey