[KatM]

Well, this is a new beginning for me as a new member. Thanks to all for their insight and information. I finally feel as if I am not going crazy in dealing with my condition. Isn't it unfortunate that when you get ill, those that you think you can count on the most, ie the neurologists, are those that you come to count on the least? I think I'm a fairly intelligent woman but manueuvering through this world has been my greatest challenge in life it seems. It's been one road block after another. However, my stubborn nature (and a strong, supportive husband what won't let me drop down my hands and give up) has kept me going.

In the fall of 2006, life was good and going full speed ahead for me. Family life was great; my work was stressful and hectic because of one huge project but was winding down. I was going to ask for that big raise we all look for in life or move out and on. Then, I got a bad winter-like flu for a few days in September. Several weeks later, I started to spiral down slowly. I went to my family doctor. Low grade fever, cold hands and feet that became freezing at night; fatigue that turned chronic; leg and arm weakness; pins/needles in hands and feet. Then within a few weeks, I heard from my doc those dreadful words "I don't know what's wrong with you." An appointment was made with a local neurologist. Within 48 hours, however, I was in the ER. I was beginning to lose balance and coordination. The on-call neurologist thought that it was either CIDP or GBS.

After weeks of testing (MRI, bloodwork, spinal tap, and EMG), a short course of IVIG was given since only the EMG showed some abnormality. I felt better for awhile but then got stuck and wasn't getting better. Walking and balance was difficult; I couldn't drive for months. Memory issues crept in. And fatigue continued. I got another opinion from an in-house neurologist. He thought it was not CIDP but a subacute form. They wouldn't refer me to the Mayo Clinic as I asked since "I wouldn't get in because there are more serious cases that don't get accepted there." I began to research on line. I asked for rehab therapy and meds. I was told do light exercise and to "drink coffee" for the fatigue and that there really were no meds. I just needed to go on with life and be monitored for potential CIDP relaps. That was it? How unprofessional. Just say "I don't know" which seemed to be closer to the truth. After 5 months or so, I decided that I needed a get out of this clinic. The pins/needles in the hands and feet continued. The weakness in the arms and legs was the remnant damage. The shooting pain in the feet at night was unbearable. I couldn't return to work; lost my job; and life was upside down, again.

Well, to cut to the chase, after getting in to see a well known GBS neurologist at the University of Minnesota that said "GBS", I still did't feel right. I read his book. I didn't fit the GBS profile. I asked for the Mayo Clinic. Got referred in but was reminded by the Mayo neuro that I wouldn't have had it not been for the referral. Odd. I saw walk-ins in the waiting room. I tried to ignore the arrogance and be grateful. The neuro fellow on my case "got me" but was only a fellow interning. His hands were tied by his superior. I was told that I was such an "interesting case" but nothing stood out in testing. I figured my Mayo visit was almost 2 years too late. Mayo questioned CIDP and GBS. A sweat test confirmed PN - but "mild". Sure doesn't feel mild. What was the definition of mild anyways? Suggested RX = Neurontin.

Back home, my referring specialist was onto new research and didn't have time for me. Not even a post-Mayo Clinic follow-up appointment! I have never been treated so rudely. For the meds, Mayo wouldn't prescribe them for me. And the U doc said go to a PM specialist. I had to push the call back nurse for a name. That's it. I had it. I feel lousy most of the time; regular activity tires me; the pain persists. Was I going to got it alone and be doctor free? So far, they've only confused me. Now, I had 4 different diagnoses: CIDP, subacute IDP, GBS, and PN! I thought Mayo was going to be the deciding diagnosis.

Then I found this website. Read about the Neorontin and the lawsuit against Pfizer for off-label improprieties and thanked God that I decided not to take an anti-seizure drug for neuropathy. Thanks for sharing this information.

Well, now I'm stuck. Alliopathic medicine has failed me. So, anyone out there try homeopathy or naturopathy? I tried acupuncture but stopped because of the cost.

Thanks for reading.

[Kitty]

Hi Kat and welcome to NeuroTalk! Wow, you've really been through the ringer with doctors and specialists. I'd have to agree with you that some of them lack professionalism for sure!

I've posted the PN forum link in case you haven't visited there yet. I'm so glad you joined.....there are lots of very caring and supportive people here!

http://neurotalk.psychcentral.com/forum20.html

[FranksAngel]

welcome katm to neurotalk ... there are lots fo friendly and supportive people here ... i hope you find answers soon ... being ill is never nice ... being ill and not knowing why is definitely not what anyone wants ... again welcome to nt

[weegot5kiz]

Hello and welcome to Neuro Talk, sorry about the issues you are facing.

Dont hesitate to post questions and get answers and insight, you will find a lot of nice and helpful folks here. again welcome to NT

[glenntaj]

--though I feel badly for the reasons you're here. Unfortunately, your story is not all that uncommon among us neuropathy sufferers.

None of the diagnoses you've gotten are exclusionary--in fact, CIDP is often thought of as the more chronic, slower onset form of GBS by neuropathy experts/researchers--and there are many variants that don't present "classically", and therefor confuse doctors who are not real experts.

A number of people have found Mayo better for rheumatological issues than for strict nurological ones when it comes to determining neuropathy causes--the Jack Miller Center in Chicago, Johns Hopkis in Baltimore, the Cornell Weill Center in NYC, and Massachusetts General in Boston all have big research programs in neuropathy and seem to be more up on the latest trends in the area.

I imagine you are a difficult case. But your syndrome does sound like a post-infectious autoimmune molecular mimicry situation. The trick would be to determine the extent of your damage and to see if you could get more immunomodulating therapy to forestall more attacks--CIDP and its related variants tend to be of the relapsing/remitting variety (they're almost like a peripheral nervous system analog of multiple sclerosis).

I see herekitty has given you our neuropathy forum link here--please come over if you haven't already, and we'll put our brains together (we have considerable brains here--this place may be the biggest non-physician thinktank on neural conditions that exists, with much hard-won expertise ). I would love to know just what testing you've had--especially neural autoantibody testing, and what it has shown/not shown. And you should check out the Liza Jane spreadsheets (www.lizajane.org) when you get a chance--these were put together to provide an exhaustive listing of tests for neural symptoms, to suggest new ones to doctors, and to track trends over time.

[Bannet]

Hi Kat and Welcome to NeuroTalk. I'm so sorry that you are not getting the answers you need. IMHO I would look for a new neuro.

There are lots of wonderful supportive people here and loads of information. Please feel free to jump in anywhere.

[Darlene]

Hello and welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help.

Again welcome, looking forward to seeing you around.

Darlene

[DM]

Hello Kat and another welcome to NeuroTalk here. Really glad you found us and hope you continue to check out the many informative forums here, hopefully finding some helpful info. I see Glenn has given you some great advice and so I'll just add that I look forward to hearing more from you. take care.