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Old 01-20-2011, 12:04 PM   #1
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Difficulty Reaching Diagnosis

I seeking opinions for a somewhat complicated medical situation I've been facing for many years. I'm hoping someone reading this may have some knowledge or experience to share, as I'm trying to work with my doctor to reach a diagnosis.

I just turned 26 and since I was roughly 13 I've been plagued with various health issues. Since I was 13 I've often had routine blood work done (CBC) and I can almost always expect to hear my iron and/or B12 levels are critically low. For quite a while my diet was suspect, so changes were made, but they never helped. Once I was 16, my doctor started giving me regular iron and/or B12 injections which seemed to help with the general fatigue.

When I was 17, my doctor diagnosed suspected my mother had Lupus, but ultimately diagnosed her with Fibromyalgia. The same year, he daignosed me with Fibromyalgia. I've suffered unusual muscle pain and weakness for a couple of years at this point, which I call unusual due to being so young.

A couple of years ago, my doctor and I started exploring other avenues, as Multiple Sclerosis had become suspect. I went to see a Neurologist who said he couldn't confirm a diagnosis of MS as my MRI had no lesions present - but he also told me, that at my age, it's possible to have MS and still not have any lesions present yet. The Neurologist referred me to a Rheumatologist. The Rheumatologist suspected that, in addition to Fibromyalgia, I may have Rheumatoid Arthritis. After a couple of visits, he suspected RA was not my issue, but Fibromyalgia was definitely present.

About four months ago my routine CBC came back with lower than ever iron levels. My doctor showed me my results and the range on the paperwork was supposed to be between 40 and 120, but my iron level was at 7 - My doctor prescribed four more iron injections over a period of eight weeks.

On a side note, I've always had issues with my bowel and digestion. Frequent consitpation, and when not consitpated, bouts of diarrhea. I've had cold hands and feet ever since I can remember - noticeably blue/black fingers and toes. I've often been told I look flushed, due to redness over my cheeks and nose, but this isn't associated with physical activity. I'm also evry light and sun sensitive. If I spend more than 10 to 15 minutes in the sun, I itch terribly and have a rash-like sunburn.

What has prompted me to dig a little further is a new symptom - hair loss. If I gently grasp my hair (not running my fingers through it) I have a minium of six hairs in my hand by the time I reach the end of my hair. It doesn't matter how many times I do this, I'll always get hair in my hand, and it doesn't matter how gentle I am, it still happens.

Just as my doctor and I were discussing MS, we briefly touched on the topic of Lupus, but quickly dismissed it. Now I'm starting to wonder if maybe we should revisit Lupus as a suspect.

In the past year I've had several confirmed incidents of Idiopathic Lymphadenopathy. I honestly have no idea what all of this could add up to. I feel like we're working very hard to find a definitive diagnosis, but from what I understand, being the age I am, nothing is easy to diagnose. I can't help but feel discouraged with the lack of answers, and going for so many test which never yield results leaves a person feeling a little bit crazy.

Does anyone have any ideas?

 
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Old 01-20-2011, 06:59 PM   #2
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Re: Difficulty Reaching Diagnosis

Hi, I can understand your frustration. Have you been tested for prenicious anemia? I would think they would send you to a hemotologist. M.S, lupus, fibromyalgia all seem to have the similiar symptoms. I am in the same boat as my ANA was normal. Reynaud's Syndrome can cause the cold, blue hands, feet and nose. A GI doctor to make sure you aren't bleeding somewhere. I think I would keep looking into the lupus. good luck ok?

 
Old 01-21-2011, 09:32 AM   #3
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Re: Difficulty Reaching Diagnosis

I am having diagnostic dilemma.Have aways had slow GI motility,difficulty swallowing.Was diagnosed with esophageal stricture with pill obstruction.Swallowing difficulty persisted despite dilation.Recently diagnosed with eosinophilic esophagitis. Had endoscopic bowel perforation with upper and lower endoscopy.Recent total hysterctomy for uterine adenocarcinoma.Had ascites postop. Abdomen visibly larger on one side postop.Opposite side had paracentesis showing, lymph fluid.Then developed genital edema on side with increased abdominal appearance. Edema then became evident on both legs,followed by buttocks,flanks,breasts and upper arms.Painful nodules started in groin and are now behind knees,in elbow creases,under arms,neck,upper ribs below armpits,upper outer arms.An area on larger abdominal side feels cooler to touch.Lower back pain then started.Lumbar spine MRI shows bulging disc,degenerative verterbrae.Have had carpal tunnel and symptoms now intolerable.Most recently when standing,increases if legs are lifted while lying on back or when standing causes numbness in feet and calves.Abd CT with no contrast shows no lymph node issues or tumor.Infectious lab work neg.Sed rate normal Cbc normal.Symptoms have evolved in order stated over 6 month period after surgery and all present still.Long post but need help

 
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Old 01-21-2011, 06:11 PM   #4
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Re: Difficulty Reaching Diagnosis

I was just wondering if any of you have looked into Lyme Disease? I have had all of the symptoms described here and I was Diagnosed with Lyme In Nov 10.

If you go to the Lyme board, at the top there is a list of symptoms which may help, might be worth looking into.

Best of luck

 
Old 01-21-2011, 07:21 PM   #5
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Re: Difficulty Reaching Diagnosis

I was neg for lyme 's disease.Hope you are better

 
Old 01-22-2011, 01:54 AM   #6
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Re: Difficulty Reaching Diagnosis

Hi

which lab were you tested at? I had 3 negative Lyme tests prior to my positive test. Testing for Lyme is extremely unreliable, if you go to the Lyme board and read the posts you will see how testing is very disputed.

Please, please read up on this disease! Doctors know very little about Lyme, the only doctor that could diagnose this disease is a Lyme literate medical doctor (LLMD) if you have not seen one, then I would not rule out Lyme.

Best of luck

 
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Old 01-23-2011, 12:36 AM   #7
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Re: Difficulty Reaching Diagnosis

I was tested at Quest.are u familiar with it. I will go to the board snc look.I wil also look for a lyme literate MD

 
Old 01-23-2011, 11:51 AM   #8
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Re: Difficulty Reaching Diagnosis

Hi Epic

Yes I have heard of Quest, they are not terribly reliable, the best Lab is Iginex where I tested positive.

Lyme is however not always diagnosed on test results alone, if you see an LLMD they will evaluate you based on your symptoms as well. Please do not waste your time with any other doctor other than an LLMD, they know nothing about Lyme.

Best of luck

 
Old 01-24-2011, 06:39 AM   #9
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Re: Difficulty Reaching Diagnosis

Have you been tested for celiac? I was just dx'd in Sept- my symptoms were ribcage pain and VERY low iron and ferritin. I also had unexplained enlarged axillary lymph nodes on the left side. They are back to normal now, but they were almost 2.5cm at one point and very painful.

Last edited by Stabevrian; 01-24-2011 at 06:53 AM.

 
Old 01-24-2011, 09:51 AM   #10
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Re: Difficulty Reaching Diagnosis

Hyjynx-- I have to say that I have almost the exact same issues although my iron level is never that low. I had a lot of issues with low iron levels when I was pregnant and have still have issues. Finally in March a Dr. decided Fibro. I was relieved but after researching fibro was confused-- I do not have touch point sensitivity and several symptoms that really do not fit. I just finished with a rheumatologist and gastro doing several tests from colonoscopys to blood work. I have been thrown back to the fibro label.

It is frustrating and the doctors are at a loss as well. Basically I have been told that even though fibro doesn't completely fit, it fits the best right now. I would be interested in keeping up to date with what are being tested for-- because maybe somewhere out there there are answers for us!

I am leery of taking any of the stronger fibro meds since I have strange reactions to most medications. I am going to try going as healthy as possible food wise-- not eating any preservatives, additives, hormones, artificial sweetener, etc. to see if that helps me at all or not.

Good luck! I wish I had an answer for you--cause then I would have an answer for me too!

 
Old 01-24-2011, 10:05 AM   #11
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Re: Difficulty Reaching Diagnosis

I have often wondered if that is what I have.

 
Old 01-25-2011, 04:55 PM   #12
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Re: Difficulty Reaching Diagnosis

You need to let go of the idea that physicians will help you.

If you have digestive problems then you have a digestive disease. You have about 3% chance of the correct diagnosis after seeing a dozen physicians (University of Chicago celiac center.

Start a food and beverage diary. Start by eliminating fructose, sucrose, wheat, rye, barley, oats, dairy, citrus, potato, sprouts, eggplant, spinach, and alcohol for a few months to see if this makes you feel beter.

One thing that may make you feel beter is a good omega 3/6 supplement like hemp oil (ensure THC free). Vitamin and mineral supplements should also help.

You may want to avoid immune stimulants like echinacea.

Please don't feel bad about this. Medical schools teach physicians "not to waste money testing for autoimmune disease because it is so rare you will never find it".

NIH indicates about 7% of the US population has an autoimmune disease.

 
Old 01-25-2011, 06:54 PM   #13
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Re: Difficulty Reaching Diagnosis

Forget about helping me.I just don't want to die b/ c of them. Three X's bowel perf by MD
Today discovered complement assays wren't done b/ c of incorrect specimen transfer. Another test was mistakenly ordered instead of ACE therefore that remains undone. The incorrect test was positive genes for coronary artery disease and hypertension...not news as all males on parenal side have had fatal first heart attacks until my 29 yr old. No drinker,nonsmoker,thin,non insulin dependent diabetic,nephew had triple bypass last spring
His dad was given xanax for his chest pain 10 days before dying. My nephews MD was telling him he was stressed and actually called in a muscle relaxant . His wife insisted on EKG. and he was having an MI during the EKG. It showed prior MI that we know was 3 days prior. His MD wouldn't see him for 2 days
TODAY I got report of a nodule on my lung that wasn't reported on my chest film 6 months ago.right before my hysterectomy for uterine adenocarcinoma. I am also a nonsmoker,nondrinker. Radiologist also reports normal gallbladder which is distressing as I believe it was removed 1987. These are the professionals with my life in their hands...posively frightening.
Having PET scan next week
I actually know someone that went to Mayo and was fiagnosdd with celiac disease. How difficult is it to get in at Chicago?
Would love to self refer to Mayo but I was told they wouldn't see me for onco diagnosis

 
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Old 02-23-2011, 09:11 AM   #14
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Re: Difficulty Reaching Diagnosis

Awe Hyjynx, sounds like you are going through a hell of a time. Try not to overthink too much of this. I hear, and probably feel, that if thought about too much can produce symptoms! YIKES! Only thing is, I don't know how to "outthink" this stupid disease! Sufferin right along side of you!

 
Old 02-23-2011, 09:56 AM   #15
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Re: Difficulty Reaching Diagnosis

Quote:
Originally Posted by Hyjynx View Post
I seeking opinions for a somewhat complicated medical situation I've been facing for many years. I'm hoping someone reading this may have some knowledge or experience to share, as I'm trying to work with my doctor to reach a diagnosis.

I just turned 26 and since I was roughly 13 I've been plagued with various health issues. Since I was 13 I've often had routine blood work done (CBC) and I can almost always expect to hear my iron and/or B12 levels are critically low. For quite a while my diet was suspect, so changes were made, but they never helped. Once I was 16, my doctor started giving me regular iron and/or B12 injections which seemed to help with the general fatigue.

When I was 17, my doctor diagnosed suspected my mother had Lupus, but ultimately diagnosed her with Fibromyalgia. The same year, he daignosed me with Fibromyalgia. I've suffered unusual muscle pain and weakness for a couple of years at this point, which I call unusual due to being so young.

A couple of years ago, my doctor and I started exploring other avenues, as Multiple Sclerosis had become suspect. I went to see a Neurologist who said he couldn't confirm a diagnosis of MS as my MRI had no lesions present - but he also told me, that at my age, it's possible to have MS and still not have any lesions present yet. The Neurologist referred me to a Rheumatologist. The Rheumatologist suspected that, in addition to Fibromyalgia, I may have Rheumatoid Arthritis. After a couple of visits, he suspected RA was not my issue, but Fibromyalgia was definitely present.

About four months ago my routine CBC came back with lower than ever iron levels. My doctor showed me my results and the range on the paperwork was supposed to be between 40 and 120, but my iron level was at 7 - My doctor prescribed four more iron injections over a period of eight weeks.

On a side note, I've always had issues with my bowel and digestion. Frequent consitpation, and when not consitpated, bouts of diarrhea. I've had cold hands and feet ever since I can remember - noticeably blue/black fingers and toes. I've often been told I look flushed, due to redness over my cheeks and nose, but this isn't associated with physical activity. I'm also evry light and sun sensitive. If I spend more than 10 to 15 minutes in the sun, I itch terribly and have a rash-like sunburn.

What has prompted me to dig a little further is a new symptom - hair loss. If I gently grasp my hair (not running my fingers through it) I have a minium of six hairs in my hand by the time I reach the end of my hair. It doesn't matter how many times I do this, I'll always get hair in my hand, and it doesn't matter how gentle I am, it still happens.

Just as my doctor and I were discussing MS, we briefly touched on the topic of Lupus, but quickly dismissed it. Now I'm starting to wonder if maybe we should revisit Lupus as a suspect.

In the past year I've had several confirmed incidents of Idiopathic Lymphadenopathy. I honestly have no idea what all of this could add up to. I feel like we're working very hard to find a definitive diagnosis, but from what I understand, being the age I am, nothing is easy to diagnose. I can't help but feel discouraged with the lack of answers, and going for so many test which never yield results leaves a person feeling a little bit crazy.

Does anyone have any ideas?
The problem that your having with cold and discolored fingers and toes could be Raynaud's Disease. I have Sjogren's Syndrome, which is closely related to Lupus. I overlap SJS with Fibromyalgia & beginning symptoms of Raynaud's. Low blood calcuim can also cause some of your symptoms.

 
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