New symptoms...

[AerobicsMomma]

Greetings, so it's been a long time. I've been living in this bubble of refusing to let my LC rule my life. I was going to show it who was boss! I just got so tired of lab results and Drs. I took a 6 mo. break. I even got my Real Estate License and started working~ Part of it was I was told to stop taking the Asacol by my newest GI DR. and what a gift that was...I still have frequent episodes but I'm not in a constant state of D. Just use the Pepto when needed. But now I've "earned" some new stuff and want to see if I'm a freak of nature or this is what life has in store...

First- do you think it's possible that my current flare up is causing shortness of breath? I feel winded, and the pain....well let me note I wanted to see if I could by chance be able to eat guacamole again UGH. DUMB MOVE! I'm not super distended but bloated enough that I'm not hungry and feel full.

Second- the last 3 months I've been having muscle twitches and numbness in my legs and arms (especially when I wake up) and I'm always cold.

Third- VERTIGO, oh dear Lord this is the worst one, I've been having serious motion issues...

So am I following a familiar path or am I on a road alone?

Great to see the TShirts....I remember asking about that last year.

Well I'm sure I wasn't missed but I think about all of you, and how nice it is to know that I have people to ask my questions that may have been there done that. I'm currently trying to convince myself that I have Whipple Disease since that's cured with antibiotics! Oddly enough some if it fits since they never could figure out why my 5HIAA was so high 3 times with normal serotonin levels and no Carcinoid via scans.....

I'm a 32 year old Mom, happily married to a man who wants to divorce my colon!! I tease people that I have a crappy colon- hehe and visit a site called the Potty People where we discuss BMs! LOVE IT!

Hope to hear from y'all soon.

[hazel]

...crappy colon--haha. I don't have any input about your symptoms but am glad to hear from you. Sorry you are so uncomfortable.
BACK

[barbaranoela]

well all I can add---U ARE NOT ON THIS ROAD ALONE!!!! In my case I have taken a *detour* and travel another route---

I have to say I am *controlled* but due to thyroid meds. I am Xperiencing the issues of bloating ---itching and am not hungry but I know I have to force myself to eat---

I wish I could offer more advice but I am stuck in my little shell--different than yours--

I hope things get better----specially that vertigo----that is a bitch!!!

Take care and try to let us hear how your issues improve-
luve Barbara

[mle_ii]

I'm with you on not wanting my disease to control my life. It's been a struggle, but I'm getting better in that regard.

For your First "shortness of breath" do any other foods cause this? Is it mostly in line with being bloated? I think bloating might cause this as if you were bloated enough it might push on your diaphram and make breathing more labored.

Second, I get this every once in a while. My left thigh muscle keeps going to sleep when I lay down. There are various causes for this happening, vitamin/mineral/hormone imbalance, pinched nerve. Being cold can be caused by low serotonin levels, but it sounds like you have enough.

Third, I've never had vertigo, but I can imagine I'd feel like that if I were in a panic/anxiety attack.

Oddly enough some if it fits since they never could figure out why my 5HIAA was so high 3 times with normal serotonin levels and no Carcinoid via scans

This bit is odd. Perhaps producing too much serotonin and a lot of it's being utilized by the GI tract (which would cause diarrhea) yet enough gets out into the blood to show normal levels in the blood.

Anyway it appears that there are some things that can throw off the values. See the following 2 links:
http://en.wikipedia.org/wiki/5HIAA
http://www.mainlinehealth.org/mlh/other ... e_3292.asp

It is rather interesting that it says to avoid Avocados and guacamole is what gave you some problems. It must increase serotonin levels or something.

I'd like to divorce my colon as well, perhaps an anulment if the church will allow. :)

Sorry I can't be of more help.
Mike

[mle_ii]

Hmmm... you said you feel cold. Are you shivering (feel cold) or is your body temperature (core temp) low?

It appears the excessive serotonin can cause shivering and muscle twitching, and I can see how it might cause or aggrivate a vertigo type feeling.

http://en.wikipedia.org/wiki/Serotonin_syndrome

What medications/supplements are you currently taking?

What do the drs say about these symptoms?

[tex]

Hi AerobicsMomma,

It's good to hear from you again, but I wish you had better news for us. Whipple's disease is pretty serious stuff, so I certainly hope you don't have that. A small intestinal biopsy will answer that question, if you feel that enough symptoms match. I think that usually, with Whipple's, intestinal bleeding is present, so anemia is usually a problem, as is vision deterioration.

Shortness of breath is not a typical MC symptom, but, as Mike pointed out, it's certainly possible. When I was reacting, I was sometimes so bloated that I had breathing difficulties, because my diaphram was so restricted in it's range of motion. I sometimes had to sleep sitting up.

I also had a lot of instances of arms and legs going to sleep, twitches, and worse than that, cramps in my legs, and feet. This is probably caused by electrolyte or nutrient deficiencies, due to malabsorption, if the small intestine is affected, as it is for some of us. I had vertigo only occasionally, but for some of us, it was/is a frequent problem. Thankfully, it never bothers me, now. The corticosteroids can cause vertigo for some people, if you happen to be taking any of them.

There have been numerous complaints by members about feeling cold, also. Raynaud's syndrome, and Sjogren's syndrome, are autoimmune diseases with that symptom, and patients with MC are prone to developing other autoimmune diseases, especially if their MC symptoms are not controlled.

Congratulations on the real estate license - my brother did the same thing, recently, and he loves the work.

So, how are you treating your LC these days? Diet? Any meds?

Tex

P S Yep, you were the inspiration for the T shirts. If you want a shirt, (or shirts), just PM me, (or e-mail me), your logo style preference, and size, (or sizes), and your mailing address, (for priority mail). They're free to members.

[MaggieRedwings]

HI Aerobics Mom,

Glad to hear from you again and when anyone is missing from the board they are definitely missed.

I have the breathing problem but due to heart problems. Definitely the twitches and numbness and more definitely the vertigo that has arisen starting in June. Being treated for that now. Also, guacamole is the worst for me but any raw veggies are.

Nice talking again.

Maggie

[harvest_table]

Third- VERTIGO, oh dear Lord this is the worst one, I've been having serious motion issues...

So am I following a familiar path or am I on a road alone?

I don't think you are. I was in the deer stand a few days ago and totally missed a shot that should have been there- I felt dizzy and could not focus in the moment , it suprised me.

Made me think I might be better in the cabin tending a fire and making breakfast than climbing a 12 foot deer stand with a rifle on my shoulder in the dark, although I love to hunt.

Feeling the vertigo thing also and it scares me.

Joanna