I’m afraid I might have poems disease ???

I read an article “all about guillain barre syndrome”. I loved this article because it describes gbs pain to be “like frost bite” and flank pain “like kidney stones”. I dont know if the same goes for cidp but I recently found that article but my hospital ER reports from the past have me in the ER complaining of pain like frost bite and the most recently fearing for my kidneys. I even made them do an ultra sound of my left kidney.
I dont know much about poems ill have to look that up.

[url]www.jsmarcussen.com/gbs/uk/treatment.htm[/url] its under the pain part the name of the article should be “treatment and care of patients”
I just read about POEMS and I hope its not that for you. it sounds alot more complicated than CIDP if thats possible.

[QUOTE=ms. judy]Hi everybody,

Haven’t been doing to well, I ended up in Urgent Care Thurs. because I had
horrible Lt. flank back pain that kept me awake all night. They thought I had
kidney stones, did a CT scan, no stones! The pain was horrible, anyway I’m
on two antibiotics and tylenol 3 with codine. I’m doing better, will find out
blood work results on Mon. The reason I’m afraid I might have Poems is
I have had pain that I feel like it’s my bones hurting. Also, I was recently
dx with glaucoma in both eyes and am taking drops for that, my left eye
has gone from 35 to 70 since last August. Last time I saw my neuro she
noticed my left side was numb also, she hasn’t ordered any blood work for
quite awhile but my regular internist did. I also have developed a weird
looking spot on my lt. foot which is red and crusty, and won’t go away. I
have an appt. with a derm. next week. I’m thinking about getting a second
oppinion at Barnes Jewish Hospital in St. Louis. Does anyone think I’m crazy
or am I doing all I can? I’m still getting my regular IVIG treatments every
month. God love you all, I don’t know what I’d do without you. My urin showed I had glucose, protien, and bactieria in it also.

Thanks so much,
Mrs. Judy[/QUOTE]

Mrs. Judy, I too have had to consider whether I have Poems syndrome or not, my doc. knows nothing about poems, and I do fit most of the symptoms, but not sure exactly how one would be diagnosed…what tests determine if you do have it? People are often diagnosed with CIDP that end up having a later diagnosis of POEMS. Let me know what you found out. Hope your health is improving.

Hi,

My husband was recently dx with POEMS syndrome – after 5 years of unsuccessfull treatment for CIDP. The test that comfirmed POEMS for our nero was a complete body xray and bone scan. The xray tech said to my husband that everything looked fine and the only thing that showed up on the xray was the old break on this thigh bone Wade had never broken his leg!!!! Our neuro then proceeded with the blood work to confirm the protiens. He completed his radiation therapy in October and we are now just waiting to see improvement – they say it could take anywhere from 3 – 6 months after treatment. If you can convince your neuro to do some reading and research about POEMS that would be great. Just a quick fact – most people with POEMS are originally dx with CIDP because of the simularities. You know your body better than anyone else and if you think that there is something else wrong than keep pushing your doctors until they listen to you.

Michelle
Alberta Canada
Husband dx with CIDP in 2003 then with POEMS in 2009

Hello Mrs. Judy,

Back when my neurologist was trying to figure out my condition, POEMS was one of the possibilities if it hadn’t been CIDP. You mentioned a hospital in St. Louis. One of the most informative websites I have found on CIDP and related disorders is from another place in St. Louis, the Neuromuscular Disease Center at Washington University, [url]http://neuromuscular.wustl.edu/index.html[/url] . Perhaps they might have knowledgeable neurologists who can help you if you are still looking for a doctor.

Good luck,
Gary

Ms. Judy,

I well remember how frightening it was when my symptoms were out of control and worsening, and we did not know what was wrong. It was so reassuring when I finally got a diagnosis and proper treatment, and that was from a specialist at a major academic medical center, so I believe in the value of finding doctors who are particularly knowledgeable in our sub-area of neurology. Washington U. is a big research university, and I hope you’ll find somebody there who can figure out your condition.

Some time ago, somebody on this forum posted a link to this article, written by a physician, called “When Doctors Don’t Know What’s Wrong,” [url]http://www.happinessinthisworld.com/2009/04/26/when-doctors-dont-know-whats-wrong/[/url] . We all have an illness that is strange and frustrating, and many here report bad doctor experiences. This article is about how doctors react to uncertainty, and “what you can do as a patient to improve your chances in such situations of getting good care.” I hope you have a good experience with your new physician, Ms. Judy, and will keep us informed of your progress.

Best wishes,
Gary

I too have POEMS Syndrome-
Diagnosed with CIDP in July of 2007 ( Very Early ) treated with steroids, IVIG, Plasma P and kept getting worse. In January 2008 started Chemo- no better. In March was starting Chemo Plus all of the above- kept getting worse- Late March woke in a.m. TERRIBLE lower back pain. Unable to get out of bed. Had compression fracture in Lower Vertebrae- this was the clue to POEMS confirmed with X Rays (Lesion on Vert ) and blood tests ( M Protein found ). 20 Days of Radiation in May of 2008 and have been getting better ever since. Only symptom now is some pretty nasty neuropathy in lower legs and feet, but this too may pass. Push for the tests to be done. I still watch this forum as I feel a bond with you guys – often wonder if More CIDP’ers that seeing no improvement May be POEMS! I saw Dr Gorson in Boston who is an associate of GBS/CIDP Foundation and was familiar with POEMS- MAYO Clinic in Minnesota has a ” Dr. D ” who is supposed to be a world reknowned POEMS specialist.
Keep the faith- if it is POEMS they can help you! Please feel free to contact me direct if specific questions.
Jim M

[QUOTE=JimM]I too have POEMS Syndrome-
Diagnosed with CIDP in July of 2007 ( Very Early ) treated with steroids, IVIG, Plasma P and kept getting worse. In January 2008 started Chemo- no better. In March was starting Chemo Plus all of the above- kept getting worse- Late March woke in a.m. TERRIBLE lower back pain. Unable to get out of bed. Had compression fracture in Lower Vertebrae- this was the clue to POEMS confirmed with X Rays (Lesion on Vert ) and blood tests ( M Protein found ). 20 Days of Radiation in May of 2008 and have been getting better ever since. Only symptom now is some pretty nasty neuropathy in lower legs and feet, but this too may pass. Push for the tests to be done. I still watch this forum as I feel a bond with you guys – often wonder if More CIDP’ers that seeing no improvement May be POEMS! I saw Dr Gorson in Boston who is an associate of GBS/CIDP Foundation and was familiar with POEMS- MAYO Clinic in Minnesota has a ” Dr. D ” who is supposed to be a world reknowned POEMS specialist.
Keep the faith- if it is POEMS they can help you! Please feel free to contact me direct if specific questions.
Jim M[/QUOTE]

I saw Dr. Gorson and he was a complete jerk…..was your experience different than that? I think I may have POEMS, and was so intimidated by him I didn’t dare mention it. Seeing new neuro tomorrow, who I hope will put all of my syptoms together and get to the bottom of this. Dr. Gorson does not rate well on Vitals.com, or Rate your MD .com. Hate to have others see him and go throughh what I did. Best wishes to all!