Share Facebook
Crohn's Disease Forum » Support Forum » Undiagnosed Club » Peripheral Neuropthy questions


10-26-2012, 12:10 PM   #1
ginnyrdhap
 
ginnyrdhap's Avatar
 
Join Date: Sep 2012
Location: Monterey, California

My Support Groups:
Peripheral Neuropthy questions

Hi guys,

I'm going to Stanford GI clinic on Nov. 7th to get a second opinion on whether I have Crohn's, and then to their Rheumatology clinic in December for evaluation of Spine and Joint problems (possible Ankylosing Spondylitis or Enteropathic Arthritis).

In the mean time though, I'm getting concerned about these weird feelings I get in my feet, sometimes hands and fingers, and a couple of times lips. I guess it would be considered Peripheral neuropathy from the description I read online. My feet feel heavy, and like when you've been walking through the snow and your socks get wet, your feet get so cold they hurt and feel numb. It's not horribly painful, but just annoying and weird. In my hands it can feel hard to make a tight fist and there are patches where the skin feels sore or like it's been lightly burned. This started when I first got acutely ill 2 months ago. Somedays I thought it had gone away and then it would come back. Could I be low on electrolytes even though I don't have diarrhea or vomiting. When I went to the ER when this all started they said I was dehydrated, but I didn't understand why when I was drinking electrolytes and lots of water, and again had no vomiting or diarrhea. How else could someone be dehydrated? I'm not sweating a lot, but I do get these waves of feeling really hot on and off (maybe hot flashes, I'm 50), and I get a bit sweaty but it doesn't last more than a few minutes. I've mentioned to all the doctors I've been seeing and no one seems very concerned. My B12 was low at first but has come up to a high level with supplementation. Vit D fluctuates, it was low (23) a few weeks ago, but I've been taking more now. My magnesium, potassium, and sodium were all normal. When I mentioned to my GI doc last week that I might be nutrient deficient he said no, your blood tests looked fine. But I'm wondering if I should get my B1, B3, B6, Vit E, and Zinc tested. If I'm OK with the others, would I automatically be OK with these, or could someone only be deficient in one nutrient when the others are fine? I also wonder if I should get tested for Lyme's disease. The first Rheumatologist didn't thin I needed to be because of where we live in Monterey, CA area and that I haven't had a known tic bite. But still, maybe it needs to be ruled out. Well, I'll wait to hear what you all think. I could call my primary doctor and ask for a lab requisition for these nutrients and Lyme's. I have a feeling it would be pointless to go see a neurologist before I have the pillcam at Stanford to check for Crohn's. I don't think I'd want to take any meds for the PN at this point anyways so it doesn't mask any Crohn's signs and symptoms. But hopefully there's no permanent nerve damage going on.
__________________
Crohn's Diagnosed, finally, in August 2013
10-31-2012, 01:23 PM   #2
motheroftwins
Senior Member
 
motheroftwins's Avatar
 
Join Date: Aug 2012
Location: Northern, California (In the beautiful Napa Valley)
Hi ginnyrdhap, you poor thing I am so sorry you're going through all this, and I hope you feel better soon. I would definitely want to see if I was deficient in vitamins. I am surprised; they didn't admit you in the hospital because you were dehydrated without a known cause (Those darn doctors). if it were me and I was concerned about anything at this point I would want to get it checked out. I wish you all the best sweetie, and I hope everything goes well when you see the GI in Stanford.
__________________
Diagnosed Sept 18, 2012
Prednisone 40mg started 9/18/12 StopTapering 10/16/12, 20mg. Back up to 40mg 10/26/12
Humira, Sulfasalazin 4500mg
Cholestyramine
Proctofoam HC (for fissure) as needed
Dexilant 60mg

Zofran and Compazine (tummy troubles) as needed
Wellbutrin
Buspar
Trazadone
Norco as needed
Tamadol 50 mg as needed

Folic Acid
Vitamin D
B12

Surgeries
pyloric stenosis and appendix
10-31-2012, 04:08 PM   #3
ginnyrdhap
 
ginnyrdhap's Avatar
 
Join Date: Sep 2012
Location: Monterey, California

My Support Groups:
Thanks so much motheroftwins. I did end up getting the blood test on Friday for the vitamins and zinc. The lab tech said it takes a week to get results. My GP didn't want to order the lymes test until after the Stanford appointment for some reason. I was hoping to rule it out as a possible cause of the neuropathy. Oh well, maybe the GI doc will order it. I'll post my lab results about the vitamin levels as soon as I hear from the doctor.
Is your UCSF appointment next week? Hope it goes well!

Last edited by ginnyrdhap; 10-31-2012 at 04:09 PM. Reason: Misspell
10-31-2012, 04:17 PM   #4
Sybil Vane
Forum Monitor
 
Sybil Vane's Avatar
 
Join Date: Nov 2011
Location: Virginia

My Support Groups:
I would make an appointment with a neurologist because it might take a couple of months to get in, but I would think the rheumatology team would order an MRI which would show anything concerning. I recently went to a neurologist because my GI couldn't figure out why my arms burn (it feels like from the depth of my bones) after I give myself a Humira shot. It started when I went from biweekly to weekly and my lips would feel numb and I would have numb patches on my face. It was scary but they couldn't find any damage after an MRI and a nerve test so I'm still taking the shots. I'm willing to take the pain because Humira really helps my Crohn's disease.
__________________
My real name is Christina and I write about my personal experiences fighting and surviving Crohn's disease on The Diarrhea Diaries at LivingSick.com.

If you're on Facebook, please join me for daily silliness, inspiration, and IBD in the news at http://www.facebook.com/TheCrohnsDiaries.



"Cats: Because sometimes they really help you."
11-02-2012, 02:41 PM   #5
motheroftwins
Senior Member
 
motheroftwins's Avatar
 
Join Date: Aug 2012
Location: Northern, California (In the beautiful Napa Valley)
Thanks so much motheroftwins. I did end up getting the blood test on Friday for the vitamins and zinc. The lab tech said it takes a week to get results. My GP didn't want to order the lymes test until after the Stanford appointment for some reason. I was hoping to rule it out as a possible cause of the neuropathy. Oh well, maybe the GI doc will order it. I'll post my lab results about the vitamin levels as soon as I hear from the doctor.
Is your UCSF appointment next week? Hope it goes well!
I wanted to wish you luck on your appointment with the GI in stanford and my appointment is on Nov 6 which is just a consultation at UCSF. I already gotten a second opinion and I have CD in my TI and small intestines and ulcers and lesion in my esophagus and tummy with inflammation and thickening.
11-03-2012, 01:17 PM   #6
ginnyrdhap
 
ginnyrdhap's Avatar
 
Join Date: Sep 2012
Location: Monterey, California

My Support Groups:
Thanks Sybil Vane. I think I will make an appointment with the neurologist just in case the rheumatologists recommend it. You're right, it probably takes a while to get an appointment and I want to get as many tests done as possible before the first of the year when my $4,100 deductible renews. Everything is covered at 100% right now so I need to take advantage of that while I can. I found up that my Vit D is still going down, despite taking 2000IUs of OTC Vit D. So my GO prescribed the prescription strength Vit D of 50,000 IUs 1x/wk for 3 months. I read on the internet that low Vit D can potentially cause peripheral neuropathy, so maybe this will help. Sorry you have to suffer through it in order to continue your Humira. But I know what you mean about being willing to take the pain because of the benefit you get from Humira. Lesser of two evils I guess.

Motheroftwins: Thanks again for being so supportive. You're very kind and it sure helps. I didn't realize you already got your second opinion on your diagnosis. Are you consulting at UCSF on what treatment options you have? My appointment is Wednesday at 8:00 in the morning. Yikes. We might end up going up the night before and getting a hotel. I'm excited about possibly getting an answer and treatment.
11-03-2012, 01:44 PM   #7
motheroftwins
Senior Member
 
motheroftwins's Avatar
 
Join Date: Aug 2012
Location: Northern, California (In the beautiful Napa Valley)
Hello, your so sweet!!! I ended up in the hospital, here is the link http://www.crohnsforum.com/showthrea...174#post525174 the entire experience was a bit scary. I guess the reasons I am still keeping the appointment for UCSF is for a third opinion, and they have more experience of the issues I am having and new findings. The good news is I am starting to feel better and more myself, so I am happy about the treatment I am getting.
I hope you get a firm diagnosis soon and start treatment so you can get your life back.
11-03-2012, 10:33 PM   #8
ginnyrdhap
 
ginnyrdhap's Avatar
 
Join Date: Sep 2012
Location: Monterey, California

My Support Groups:
Hi motheroftwins:

I'm so sorry you had to be hospitalized. I just read through your thread. Sounds like quite a lot of testing you've had to go through, but I think you're right to get an opinion at UCSF. They probably have all the cutting edge information about these diseases and the best possible treatment for your specific situation. Are you going to ask them what they think of this LDN? I'm definitely going to ask my Stanford Dr.s if they would be able to prescribe it.

Well I'll be waiting to hear how it goes and I hope you continue to improve and get stronger and healthier everyday!
Reply

Crohn's Disease Forum » Support Forum » Undiagnosed Club » Peripheral Neuropthy questions
Thread Tools


All times are GMT -5. The time now is 07:33 AM.
Copyright 2006-2017 Crohnsforum.com