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I AM SCARED...anyone willing to talk to be about symptoms and possible diagnosis

donnalou857
Posts: 5
Joined: Feb 2010

Hello to anyone that will listen. I am petrified with my current situation. I was told that I had ibs for about 20 years. SO...when i would get flare-ups of stomach pain and constipation I always just dealt with it. My last colonoscopy was 4 years agoand clear. My last bout of ibs (or so i think) started last august and came and went and came back . again--not too unusual. Never severe pain--always right sided in appendix area--never any blood or any other symptoms. One day out of the blue in dec 09, I get excrutiating back pain. MRI denoted degenerative disc disease--sought out physical therapy and prob subsided all except for a nerve numbness in lower leg that they thought may have been compressed during my severe pain. Long story I know but they finally thought I had piraformis syndrome and I bought it doing all the exercises to stretch muscles etc, good chiro helped--thought I was on road to recovery. Well to be on the safe side I went to neuro about nerve numbness and he says lets do another mri on piraformis. Test comes back showing a abnormality on the bone. As I wait now for test results---which I know you know what I mean when I say waiting is HORRIBLE--I keep thinking that if it is on the bone from the intestine I may not even have a chance to fight it. I am so scared that I feel like I am going to explode. My arms and legs feel like jelly...I dont know if it is because of my nerves or if it another symptom. Now I have hip pain--not too bad but its there. Once again is it my mind or another symptom. I just want to have an opportunity to battle if I need to. I have always been a healthy person and I want a chance to fight if I need to. I guess I just need some words of encouragement. Does anyone have the time to chat with me?
Dlou

lcarper2
Posts: 638
Joined: Dec 2009

The worse thing you can do is think of the could be's you need to wait for the test results to get in and see what they tell you. It could be so many things. When I started going to the doctor with what I called labor pains because they came and went they did all kinds of test and said it was IBS and I said no it is not and they said it was gouht I said no it is not. I said I wanted a c scan done after the did the colonostpy and it came back good so we did a c scan and 2 hrs later they called and said get the the ER I had a large tumor. I had been going through this for 3 yrs and finily I hear TUMOR. Well they did surgery and removed the tumor and my right colon and 34 lymph nodes and 19 were cancerous have been on chemo now for 4 months and 3 more to go. never give up find out what it is and treatment plan and know that you will beat this no matter what it is..we are here for you and will give encouragement in any way we can. Will be praying for you...

Louann

donnalou857
Posts: 5
Joined: Feb 2010

Thank you so much louann. I think I just need someone to talk to. Your words of encouragement are what I need right now. You brought tears to my eyes. Thank you. I will put you in my prayers.
Dlou

lcarper2
Posts: 638
Joined: Dec 2009

Oh thank you for the prayers I am cancer free right now and plan to keep the devil desease away with prayer...anytime you get down just look up and ask God for strength and he will be at your side...

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

I don't mean to hijack this thread, but i didn't know your story, Louann, and it sounds so similar to mine. It took them two years of misdiagnosing me to finally find my tumor. I knew the doctors were wrong, but as soon as you disagree with them, they put on the arrogance cap of "who's the doctor here? You or me?" lol! My doctors have rarely been correct when diagnosing me, but my body usually is correct! Everyone should question their doctors. No doctor can know your body better than you do.

Hugs!
Krista

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Please, Please, Please do not let me insult you.... I understand what you're going through.

Are you near menopause age? I began menopause with no prior symptoms at age 54 and my major complaint was IMPENDING DOOM. I'd notice a freckle I've had since I was 10 years old and it HAD to be cancer. 100 times a day, I'd check that spot. I'd search books, the internet, get up in the middle of the night to measure it (no kidding) and my life revolved around my sure death from this freckle (or some other symptom I would create). I know the arms and legs feeling like jelly! I know it so well. So, I told my doctor what was going on and he told me it's a VERY common concern with menopause. Much worse than hypochondriac because it takes over your life. He gave me an anti anxiety pill to take once or twice a day. Once I felt back to myself and knew what this was, I stopped taking the pills and the anxiety never returned. Menopause arrived very quickly and all symptoms went away other than hot flashes and night sweats.

Just thought I'd share that in case this might be of help. My Breast Care Specialist is going through menopause and she was doing the same thing. I told her what I'd been given and she got some right away. Saw her in Dec. and she said 'I have my LIFE back!'

Agree with Louann! I am HEALED and give God all the glory.

donnalou857
Posts: 5
Joined: Feb 2010

Thank you Diane, yes I am at that age. Been using a touch of bhrt cream to deal with hot flashes for about 8 months now. Thought I was probably through the worst of it but maybe not! i guess i have to also admit that all of my life I have had a tendency to lean a bit toward hypochondria. These are real symptoms though. They are not in my head..I wish they were. I will definitely check into getting some medication as my anxiety does seem to be getting the best of me. Thanks so much for talking to me.
Donna

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Have you ever been tested for celiac sprue or sensitivity? Your symptoms sound very suspect.

Dangerous Grains by Dr. Braly

You may want to google this. He talks alot about bone pain and folks with "IBS" that are misdiagnosed.

Hope this suggestion helps and what do you have to lose?

I'd love to chat.

peace, emily

donnalou857
Posts: 5
Joined: Feb 2010

No I havent ever been tested for celiac. I am going to google Dr. Braly right now. I want to see what the symptoms are as I have dealt with this for so long. I am just very scared and need to reach out for all the information I can find. Thank you emily.
Donna

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Our oldest son has Celiac Disease. He had symptoms for 37-38 years before he was dx'd. He was tested even as a toddler for Cystic Fibrosis because of his bowel problems.

Scott had 4 colonoscopies in 2 years. A in the DC area finally figured it all out. MAJOR diet changes.... no meds.

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

So according to the book, if one person in the family tests positive most likely first degree relatives have a high chance.....so have you been tested? My daughter tested positive for gluten intolerance (sensitivity) but the rest of the family has yet to be tested. We all have some symptoms of one kind or another so I've made our entire household gluten free.

I believe a lot of the allergic reactions I was having this summer/fall were due to the gluten issue and now that I don't eat any grains I haven't triggered since. But the real kicker was reading that celiac sprue can turn into adenocarcinoma of the small intestine (among a host of other serious diseases) if gone undiagnosed. I'm highly suspect that this was my sister's underlying problem (no family history of intestinal cancers) since she was also anemic (celiac symptom), had a "lupus mask" on her face.....I feel like I have solved her mystery. And if I can save my own children from her (my) fate of adenocarcinoma then it has been worth all this research, reading, digging, changing diets etc etc etc.

After reading Braly's book, I am convinced many of us on the colon boards may have an underlying gluten/celiac issue that is wreaking havoc on our intestines. What do you think? What have you read in regards to your son's celiac? Have your other kids been tested? This is all new but WOW-it sure has given me some major answers to questions and problems we (as a family) have been dealing with for years!

Just wanted to share that. :-)

peace, emily

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Other than colon cancer, I've never had any intestinal issues (except life long constipation). No. I've not been tested. I do have allergies to metals, wool (lanoline) and sulfa drugs but no foods or other concerns.

Hubby has always had issues and our middle so, Jon (33), has diarrhea every day. Numerous stomach issues. He refuses to see any doctor for anything.

Hubby (Jim age 63) has numerous auto immune type problems. RA, asthma, neurogenic bladder and has been repeatedly tested for lupus and MS (no brain scan tho). Jim has Lichen Planus and Plaque Arthritis, too. He's had 3 skin cancers removed (basal cell) and 27 removed that were early melanocytic changes. He has to see dermatologist every 3 months.

Daughter Erin (35) and Nick (15 and adopted from our daughter) have Mom's iron stomach.

Scott is 39 this July and has suffered many years ....... Poor kid was hospitalized as a toddler and finally we were told he was allergic to 'Cheerios and Peanut Butter'. He got so ill and lost so much weight that he went from gastro to gastro in the Baltimore and DC area til he got an answer. Scott is highly allergic to penicillin.

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

with all of Jim's issues and he's not been tested for gluten/celiac? You may want to check out the book I'm reading.....it talks about all those auto-immune issues you're listing. It just makes so much sense!

peace, em

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Hi Emily! What exactly includes gluten? Is it wheat products too? I eat a lot of farina (malto meal) because it's soft mechanical. If i have to eliminate that, i'm in trouble. What do you use in place of grains? I would love to experiment with this.

Hugs!
Krista

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

rather than completely hijack this thread I'll just start a new one.....

:-)

sorry donnalou!

JanetMacK
Posts: 3
Joined: Jul 2010

Hi: I don't know much about the other things you mentioned but I know a lot about anxiety. It sure can play tricks on you. The problem is once you experience someting like leg weakness you get so anxious that it will return that you pretty much can guarantee that it will. It's the fear of it happening that pumps all that adrenalin making it happen. Kind of like if someone had snatched your bag of your arm and run off and you'releft there all scared and shaken. I'm trying my best to relax and not make my worries come true. Your legs will hold you.
Janet

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