How do you get diagnosed?

General General CIDP Discussion
21

Hi Jo & Jen!

What a small world! Especially when your body betrays you, it seems like it is a very big world in which we are a small grain of sand! I live in Suffolk County on Long Island and first began symptoms after I contracted the flu while pregnant. I subsequently miscarried and began the symptoms during. I felt like I couldn't stand up out of the rocking chair, my legs felt like they were stuck in cement. During the flu, I now remember noticing my hands and arms felt pins and needles. Dr said that it was carpal tunnel, but that didn't make sense, because I was only 3 months along. (She was our fifth child and I knew what was normal and what wasn't)

Anyway, the pins and needles spread upward to my trunk, neck and spine, along with migraines so painful it brought tears to my eyes. Finally they gave me propophol pre op to my D&C because I couldn't walk due to the pain. Even my eye lids felt numb. At the ER they thought I was having a stroke or seizure. They did Cat Scans, MRIs EEGs and no results. No MS lesions, nothing.

The neurologist thought I has suffering from seizures. Even though head of the department at the university hospital, I gave up and found a chiropractor who did more tests and felt like he was more caring. Did that for almost six months. Chiro said I had a bulging disk in my neck and compression in my back. But, then with adjustment, it should improve. He did, for awhile, then symptoms came back.

My chiro did x-rays and also did EMG, which neuro didn't even suggest! Anyway the EMG was positive for periphial neuropathy more I think on left foot-leg and right hand/arm, not involving motor neuropathy.

Went back to neuro and he finally began to consider CIPD. He is scheduling a LP for the 11th and another MRI. He said we will know for sure whether it is or is not MS or CIPD.

This is what I wanted to share though, I have read from other patients that if you have 2 out of the 3 criteria, EMG and exam, you can still be diagnosed. Sometimes, people that suffer from MS do NOT have an elevated Protein Level!

I will push for treatment for CIPD even if my LP comes back negative! We are re doing another MRI just to rule out MS, but sometimes patients that suffer from MS do not have lesions or elevated proteins!

Thanks for the links! We need to start a face to face group on Long Island! or just coffee~~ LOL

Christine

22

Hi Christine!

Am so sorry to hear that you have gone through so much, and what this disease is costing you. The one thing I learned is that each of us has to be our own BEST advocate and keep working to get the diagnosis and treatment best for us. I give Jo a lot of credit for researching and pushing for what she feels she needs. Would be nice if you 2 were close enough on LI to be able to meet and talk and help each other through! Or at least by phone or skype.

Hang in there and keep in touch! Jen

23

Guess you can tell by my screen name that I am a teacher by trade too. Thanks!

24

Hi Miss Christine, Is there something in the water in the teacher’s lounges or what? I wrote you a long email last night, then lost it and didnt yet have the energy to write it again. But today is a new day and my swcond day being officially diagnosed with CIDP. Very mixed emptions there but since I pretty much diagnosed myself 4 months ago, I am a bit relieved to finally put a name to what is happening to me.

First, please let me say how very sorry I am at the loss of your child. I lost a child also amd know that is a pain no one else, maybe even the father, can quite understand. I also know that having ten other children doesnt touch that loss one bit. Oh no, I dont have ten children! Just 2 furry ones. That pregnancy was unfortunately my last chance and i had to have a hysterectomy years later.

I too am sorry you have suffered so much. Please first make me one promise…i kmow you were desperate but please do not let anyone but a medical doctor licensed in EMG procedures (which adds years to their MD) ever perform an EMG on you again! I dont know if it is against the law but it should be. Severe damage can be caused and it’s an outrage that chiropracters do them. Sorry, bit of a pet peeve.

My symptoms have been coming on for some time as well and since I already have an autoimmune disease, Crohns, it makes sence that I would have another. i am frustrated though that the neurologist I was going to for four months was not able to diagnose me after an EMG. He diagnosed me with demylination and neuropathy but didnt know what was causing. I have read a lot about CIDP because it seemed, on the surface to fit me like the gloves I feel like I am constantly wearing.



tchrgirl said:

Hi Jo & Jen!

What a small world! Especially when your body betrays you, it seems like it is a very big world in which we are a small grain of sand! I live in Suffolk County on Long Island and first began symptoms after I contracted the flu while pregnant. I subsequently miscarried and began the symptoms during. I felt like I couldn’t stand up out of the rocking chair, my legs felt like they were stuck in cement. During the flu, I now remember noticing my hands and arms felt pins and needles. Dr said that it was carpal tunnel, but that didn’t make sense, because I was only 3 months along. (She was our fifth child and I knew what was normal and what wasn’t)

Anyway, the pins and needles spread upward to my trunk, neck and spine, along with migraines so painful it brought tears to my eyes. Finally they gave me propophol pre op to my D&C because I couldn’t walk due to the pain. Even my eye lids felt numb. At the ER they thought I was having a stroke or seizure. They did Cat Scans, MRIs EEGs and no results. No MS lesions, nothing.

The neurologist thought I has suffering from seizures. Even though head of the department at the university hospital, I gave up and found a chiropractor who did more tests and felt like he was more caring. Did that for almost six months. Chiro said I had a bulging disk in my neck and compression in my back. But, then with adjustment, it should improve. He did, for awhile, then symptoms came back.

My chiro did x-rays and also did EMG, which neuro didn’t even suggest! Anyway the EMG was positive for periphial neuropathy more I think on left foot-leg and right hand/arm, not involving motor neuropathy.

Went back to neuro and he finally began to consider CIPD. He is scheduling a LP for the 11th and another MRI. He said we will know for sure whether it is or is not MS or CIPD.

This is what I wanted to share though, I have read from other patients that if you have 2 out of the 3 criteria, EMG and exam, you can still be diagnosed. Sometimes, people that suffer from MS do NOT have an elevated Protein Level!

I will push for treatment for CIPD even if my LP comes back negative! We are re doing another MRI just to rule out MS, but sometimes patients that suffer from MS do not have lesions or elevated proteins!

Thanks for the links! We need to start a face to face group on Long Island! or just coffee~~ LOL

Christine

25


hi Yeacher, I tried to post this in blocks so I wouldnt lose anything but that didnt work. Anyway, I spent a lot of time with previous neuro shaking his head. I asked about CIDP several times and he would just say no, cite lack of protein in my CSF and that my damage was asymmetrical not symmetrical as CIDP MUST BE. Then I find a reputable article myself on internet that speaks about how CIDP was so narrowly defined 30 years ago, but how new researxh has shown there are many variables of the disease. Went to very respected neuro, she ordered new EMG and MRIs to rule out MS. She looked at what her resident has tested in EMG, before even sticking a needle in me, and said, you have CIDP.

So, it is not so hard to diagnose if your neuro is up to date on the latest research and his practice doesnt just consist of people with diabetic neuropathy, which he kept insisting mine looked EXACTLY like. Except that I dont have diabetes and never have. My advice to is to ask your neuro. If he has had any patients with CIDP or MS. If he has, ask him if he is aware of all current research and treatment options. If he is honest or doesnt know that the criteria has changed or doesnt seem to know a lot about IVIg, you should change drs. Believe me, I know that is hard to do but this illness is time sensitive. The headaches are throwing me off too. I dont get them and dont think they are consistant with CIDP but I do think they are with MS. Keep me posted pls.

I would love to meet when I can finally drive again! I am in Medford, whrere are you? mu drs names are Patricia Coyle and Dr. dursoy, both from Stony Brook UMC. All I know is I called this dr in Manhattan at hospital for spec surgeries, faxed him all my files, he is all over the internet when you look up CIDP. his name is Dale Lange and he said lets Drs Coyle and Dursoy repeat your EMG. i know them and have full confidence that you will not need to come to me. Pretty impressive. Try to keep smiling even tho you want to scream. Sit in the car and scream too!!!
tchrgirl said:

Guess you can tell by my screen name that I am a teacher by trade too. Thanks!

26

I like the peripheral neuropathy center at Cornell. See which one of the Doctors your insurance will accept. These center is a classy place with good care.

27

Jen,

Try one of the doctors listed here

http://www.neuropathy.org/site/PageServer?pagename=phy_us_newyork&a...

Or you can try going to one of Centers of Excellence list on the GBS\CDIP Foundation website

http://www.gbs-cidp.org/home/get-support/research-grants-2/

I know how hard it is to finding a doctor who knows about CIDP

28

Hi D,

I am only maybe 10 miles from you! I am with a neuro from the same medical center and he seems very knowledgeable, in fact said that he would treat me for CIDP but wants to rule out MS. My EMG showed per nerve damage and it wasn't symmetrical, but he said that didn't rule out CIDP. He said he rather try for a positive CSF level rather than treat me for CIDP with out it.

It isn't his fault it has taken so long to get a diagnosis because I really believed my chiro that the numbness and tingling was due to back compression and a bulging disk in my neck. Once I realized it was more than that, I went back to the neuro.

I don't have any motor involvement yet, and I want it to stay that way!

BTW a Stony Brook Ortho told me he thought I had Diabetic Neuropathy too! Jezzzzz!

I just had my Spinal Tap yesterday and it was awful! I can't bend over sitting up and curling up was horrible! She took 3 tries before she got anything. I am just glad it is over and now, I just want to know either way. If it comes back negative, I am going to push him to treat me for CIDP anyway!

I will drop you a note with my email addy and maybe coffee will be in the works!

29

Hi Christine, I saw your town when I axxepted friend request. That is so funny. What is the name of your doctor? i was seeing Dr. Coyle but she is an MS expert. ow I am seeing Dr. Gursoy and like her much better. She listens to what I say and answers questions honestly. CIDP is her area of expertise. is that your docs area? I had the lumbar pucture done in the hospital under live exray. i could have taken a nap during the procedure. This dr was amazing. Sorry your sucked. I did feel dizzy and a little headache for a few days. I’m going to write at your email too.jo

30

Yes, I def am going to complain, best go with my gut this next time, which was to not have it done in the doc's office. I will email all details. I know of Dr. Coyle. I was also told she is an MS expert, so just went with the doc who treated me who was head of dept at stony brook neuro.

Thanks for the follow up with me!

Christine

31

Hi C, what is ur dr’s name? Yes, we went to Coyle to rule out MS. Once that was excluded, she sent me to Dr. Gursoy, who is expert in EMG (she teaches it to other neurologists at SB) and she sees only CIDP patients. I really liked her. Coyle was a horror show. Very smart, very cold & nasty. I cried when I left her office. she said “I think u have just had chronic pain for 20 years” ur dr must be their boss. As to lumbar puncture, I am so lucky that my husband works @ SB…I get great treatment + he has a lot of knowledge about procedures. I will email u his name so u can if u r in his department & need help, u can ask for him. Tell him u have CIDP U R FRIEND ON SITE. He knows who u r.

32

His name is Zilberman. & yes, your DR is in the same practice as Dr. Z. I got him by luck of the draw, as he was doing a rotation at the ER at Stony Brook when they admitted me thinking I was having a stroke. I think he is a good Dr., altho, I am pretty certain he misdiagnosed me with seizures but he did have good reason because they saw an anomaly on my MRI brain scan.

Lucky you are to have a hubby that works there! :0)