Hello, All! :)

[JuliInCA]

Hello everyone, I'm Juli!

I've been lurking around a little and I'm ready to come out from the shadows.

I originally joined back in December because my brother has UC, and I just wanted to find out if there was anything at all I could do to help him. Ironically, I'm now in the middle of a diagnostic nightmare myself, which I *finally* suspect is CD, after all these years. Goodness knows the physicians don't have time to be Dr. House, so I've found you have to direct them yourself, sometimes. Makes me mad that I pay $831 per MONTH for my health coverage, and now it seems I have to do the thinking.

Good thing I'm a great researcher! LOL

I'm on SSD (SSI? not sure lol) because of genetic (and progressive) peripheral neuropathy, and likely the overwhelming depression at times also. I wear AFO braces on both legs when I venture outside (which is not often), and I'm most comfortable with my walker when I do! :thumleft: 3 cheers for mobility! LOL

That's it in a nutshell! I'll post a more detailed description of my trip thus far in the "Undiagnosed Club" thread. (I love that! lol)

Really looking forward to getting to know you - this is really a great place!

Juli

 

[Z_Ghost]

This site is great place to learn a lot and I wish I had found it a few years ago.

 

[David]

Hi Juli and welcome

I'm sorry to hear you're being tested for IBD now as well How's your brother doing?

What symptoms do you have that makes you/them suspect IBD?

And how long have you had the peripheral neuropathy and have you had your vitamin B12, B1, B3, B6, and E levels tested?

Again, welcome!

 

[JuliInCA]

Hi Juli and welcome

I'm sorry to hear you're being tested for IBD now as well How's your brother doing?

What symptoms do you have that makes you/them suspect IBD?

And how long have you had the peripheral neuropathy and have you had your vitamin B12, B1, B3, B6, and E levels tested?

Again, welcome!

Thank you Z-Ghost and David

My brother unfortunately has only had one brief period of remission in over 10 years now. I was concerned because he was avoiding all fiber, but now I understand that some people just can't handle it...

I'm not sure what meds he's taking, but I remember in the beginning he got way too thin, and now some of the meds have plumped him up, maybe a little too much. But he still has daily diarrhea, poor thing!!

It only occurred to me recently that I might have IBD - for years it's been acting like an ulcer, but a recent ultrasound, UGI, CT scan w/ dye & colonoscopy found:
severe gastritis in the gastric cardia (upper stomach)
a nodule at the GEJ
free-flowing reflux into the esophagus (I have NO heartburn pain, weird!)
a "small" nodule in my lung
something that "worried" my doctor in my colon from the CT scan
a perfectly healthy and beautiful colon

The gastritis and stomach nodule were biopsied and are negative for cancer. Don't have time to worry about the thing in the lung now, could be a vein or something they said.

The symptoms that started this journey were horrible "stomach aches" I would get periodically that feel like an all-consuming dull ache. Over the years I've been given prilosec on and off, but still get occassional attacks. The pain is mid abdomen, 3 inches above my navel, center.

Recently tho, the pain has radiated through to my back, and I have extreme bloating in my gut (I have to lay back to get relief), diarrhea, days with no poop, daily nausea and vomiting.

I'm now taking 2 prilosec twice a day because my GP isn't that bright. I suppose she's trying to heal the gastritis, however the attacks continue and I'm not at all sure the pain is in my stomach any more.

I had to bully her (and stop short of calling her stupid) to agree to a SBFT, which is scheduled for Aug. 22, only 3.5 short weeks away. (ugh)

Thanks for asking David, and I guess you can see I'm not even sure it is IBD, but I now think it's worth taking a close look.

In the meantime I'm on a self-imposed practically liquid diet. LOL

Juli

 

[JuliInCA]

"And how long have you had the peripheral neuropathy and have you had your vitamin B12, B1, B3, B6, and E levels tested?"

Oops- forgot this part!

The PN is genetic so technically I've had it my whole life. I was clumsy and even fell down a lot in high school. Never told a doctor until at age 40 I was still falling down the front steps at least once a month and getting grass stains on my work clothes. LOL

It has been slowly progressive, but recently my thighs have started to atrophy also, which is unexpected. My forearms and hands are a little funny looking from splotchy atrophy.

Recently discovered low B-12, and I take the monthly shots for that now. I've never had any of the other vitamins you mentioned tested.

 

[David]

Hi Juli,

That's terrible that your brother has been struggling so much If you think he'd be interesting in a pretty exciting clinical trial for UC patients with little to no side effects, have him get in touch with me.

As for you, are you not under the care of a gastroenterologist? If so, I'd ask your GP for a referral. You need to be seen by a specialist.

How low was your B12 when it was discovered that it was low? And what is it now? When you get in to see your new gastroenterologist D) be sure to tell them that your brother has IBD and your B12 is low. That's a big clue.

Low B12 and deficiencies in those other vitamins I mentioned can lead to peripheral neuropathy. Depression too.

I'm curious how they determined yours was genetic? And does it have a specific name?

 

[JuliInCA]

Thanks for replying, David!

I'll pass on the message to my brother, thank you very much!

In March my B-12 was 162, saying the norm is above 200, so I'm not sure how low that is. The homocysteine & methylmalonate were normal, which is how a severe deficiency is noted - I think. You may know more about that than I do.

I was tested for CMT (Charcot-Marie-Tooth disease) which came back negative. As is the case with many tests, a negative result does not rule it out.

There are many types of CMT, and my history is fairly typical of several types with the teenage awkwardness and clumsiness, however most people go to the doctor about it and are diagnosed in their 20's. I could have saved a broken foot, ankle, and numerous sprained ankles had I known to use a cane much earlier - lol.

My feet have the same "defect" although I prefer "unique look" as my mother's, and her father's. Hammer toes, high arches w/ flat feet, etc.

On the nerve conduction study, I flatlined in both legs, even when I thought I had one "skinny" leg and one normal one. My arms both tested as "less than" normal, but steady.

It's interesting - the B-12 was found (slightly?) low when I was looking for a reason for the accelerated progression of atrophy. I was concerned about the absorption because who has a b-12 deficiency these days except for people with a problem absorbing it?

Are the other vitamins you mentioned involved in absorption problems?

Edited to add:
About the GI specialist - I do have one that I was talking to during/after all the tests, but I've always gone to my GP for a referral each time. I wonder if I should send him an e-mail also? If my doctor says Prilosec to me one more time she's fired! LOL

 

[David]

Hi Juli,

That's really odd that your methylmalonic acid levels were normal with a B12 reading of 162. Kudos to whatever doctor actually checked.

*scratches chin with furrowed eyebrows*

That's really odd to me and if it was ME, I would have all of it retested. Studies showcase that 98.4% of people with low B12 would have elevated methylmalonic acid. So something is weird. Or you're a special snowflake

People with pernicious anemia can have problems with B12 deficiency. Though I guess you could call that an absorptive issue as well, but more complicated. But yes, if you aren't a vegan and get plenty of B12 in your diet, my first thoughts would be: pernicious anemia, Crohn's disease, or Celiac Disease. Oh, those two prilosec twice a day could do it too. Long term use of PPIs or H2 blockers are implicated in B12 deficiency as the stomach acid is needed in the complex process taking B12 from food to absorption. I can explain if you like.

Yes, the vitamins I mentioned can be related to absorptive problems.

*edit* -- I was thinking... did you have your methylmalonic acid levels tested AFTER you had already begun to supplement B12 in some form?