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Old 11-19-2009, 07:32 PM   #1
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Unhappy I feel like a medical anomaly & need answers!

After reading many posts I am glad I found this site and feel less alone...I have had health issues my whole life with very little answers! I actually have a running "list of symptoms" at this point and have collected old medical records to review past testing and I'm playing fake MD trying to piece something together...I have made minimal headway...I hope someone on here can help by offering advice, similar experience, etc.

I'm a 33 year old female with 2 children, 1 diagnosed with Asperger Syndrome and Anxiety, GERD, and Asthma (my bad genes!). The other is in good health. I'm petite and have struggled with weight issues my entire life. Currently I am 96lbs which has been fluctuating. The lowest adult weight I have been is 92lbs/highest 106 lbs. For the past year I have felt more and more like my body is falling apart and that I really need to find out what's going on before it gets worse or causes irreversible problems. I'm tired of feeling sick, being worried about what I eat, complaining to doctors, and people thinking I'm a hypochondriac! I was diagnosed with IBS in the past due to chronic diarrhea and inability to gain weight. I never had an eating disorder and was consuming an increased amount of food. I was put on multiple weight gaining diets without success and would lose weight effortlessly. I was tested for celiac's multiple times. At 22 I was told I was lactose intolerant diagnosed through food elimination, no tests. I wasn't told milk was in a host of things (whey and casseinate)! Since then I continued with digestive problems, diarrhea multiple times a day that was oily, acid reflux that continues to worsen, vocal chord lesions from early childhood, eczema, allergies (seasonal), recurring sinusitis, post nasal drip, asthma, gangleon cyst in wrist, bilateral carpal tunnel. I have RLS and was told that because its in my arms and at times during the day (when sitting or tired) that its not true RLS but rather ADHD (I have both lol) and anxiety. Exhausting I know!

In 1998 I had the gangleon cyst removed. In 2005 I had vocal chord surgery and continue with monitoring especially due to GERD. In 2006 I had my gallbladder removed from chronic inflammation & attacks that were misdiagnosed as my GERD worsening. There was scarring on my liver, and I was told I had a hernia "but the kind you don't have to worry about". My GERD is not under control. I continue with digestive issues of nausea, stomach and abdominal cramping, gas, bloating, and diarrhea. I did confirm a milk allergy last month but my allergist would only test like 5 foods. Digestive issues have decreased but continue, daily! I also get headaches, congestion, brain fog (i.e. decrease in short term memory, organization, sustaining attention, word retrieval), recurring UTI, recurring vaginosis, chronic dry eye and light sensitivity, urination urgency, severe pains 1-2 wks before menstruation. I had Carpal tunnel release surgery in July for one wrist.

Recently in the past year I have also started getting pain in my index fingers and I have had a swollen index finger for 2 weeks now with swelling and bruising at my finger joint in the middle, chest pains, minimal pain in knees and toes, blurrier vision, worsening light sensitivity and night blindness when driving, and itchy skin. I can't think of anything else right now and thats long enough! I've been diagnosed with: gastritis with inflammation in esophagus, stomach & small intestine(I saw it on a record), sinusitis, allergy to milk, allergy to corn (saw it on a record from 2006, was never told & looking into it now), GERD, bilateral vocal chord lesions, bilateral carpal tunnel, RLS, Anxiety, ADHD, Dry eye, asthma, eczema...I think that's it. I currently take QVar, Pulmicort, Zyrtec, Protonix 2x per day, 1000 vitamin d supplement, adderall xr 15 mg,
I've had a lot of lab work, x-rays on my fingers, an endoscopy, ekg & holter monitor. They found only a vitamin D deficiency & milk allergy. Any ideas or suggestions would be greatly appreciated! Sorry about the lengthyness!

 
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Old 11-19-2009, 09:45 PM   #2
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BeHappy2 HB UserBeHappy2 HB UserBeHappy2 HB UserBeHappy2 HB User
Re: I feel like a medical anomaly & need answers!

Welcome Jenn

You're most definately on top of things here, which is good. i am really impressed that you are getting copies of test results , many don't and it is so very important for everyone to do so. Just as you mention a diagnosis was not told to you from 2006 and you found it in your records. This also happened to me, so i now Always get copies of any and all medical tests shortly after results are in. This prepares you for a follow up appointment to ask your doc about what something may mean in a report and such. I always take notes of questions i want to ask the doc, appointments are fast and short so i need to be prepared and already having my results ahead of the appointment. Good for you learning this.

I'm wondering if you have seen a rheumatologist? i'm assuming you have a gastroenologist doctor with much of your symptoms listed.
From what you are listing a Rheumatologist appt. may help you with much here listed.

Keep on your toes like you are, this is your body and you need answers from these doctors. Keep in mind second opinions are also a good option.


Live Life Well
BeHappy2

 
Old 11-20-2009, 03:45 AM   #3
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Re: I feel like a medical anomaly & need answers!

Thank you so much for your reply and advice! I have not seen a rheumatologist yet but I do have a GI. I think it that's a good idea for me to see one as well. I just had some more lab work done due to the swelling in my fingers; however it was over a week ago at an urgent care and I have no results yet...I've resorted to a neighborhood walk-in until I can get in with a different PCP as I am not happy with my current, AGAIN, hence the beginning of record collection from crappy doctors! My mom has fybromyalgia and RA and OA run in my family. I'm just tired of feel crappy! I woke up today so nauseous I'm surprised I haven't vommitted yet, although I do have a sore throat too and my kids both just got over the flu so I may be coming down with that! Thank you again!!!!

 
Old 11-20-2009, 10:40 AM   #4
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Re: I feel like a medical anomaly & need answers!

Quote:
Originally Posted by jennifr313 View Post
Thank you so much for your reply and advice! I have not seen a rheumatologist yet but I do have a GI. I think it that's a good idea for me to see one as well. I just had some more lab work done due to the swelling in my fingers; however it was over a week ago at an urgent care and I have no results yet...I've resorted to a neighborhood walk-in until I can get in with a different PCP as I am not happy with my current, AGAIN, hence the beginning of record collection from crappy doctors! My mom has fybromyalgia and RA and OA run in my family. I'm just tired of feel crappy! I woke up today so nauseous I'm surprised I haven't vommitted yet, although I do have a sore throat too and my kids both just got over the flu so I may be coming down with that! Thank you again!!!!

 
Old 11-20-2009, 10:43 AM   #5
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Re: I feel like a medical anomaly & need answers!

You didn't mention if you had a colonoscopy, just an endoscopy. A colonoscopy would be really helpful to make sure it is just gastroenteritis and not something more serious. Have you had your thyroid checked?

 
Old 11-20-2009, 03:01 PM   #6
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Re: I feel like a medical anomaly & need answers!

No I haven't had a colonoscopy...not a test I fought for lol but you're right it would be beneficial to probably get one. I'm not sure about the thyroid...probably many years ago (at least 10) but I don't know. If they check that through blood work then I'm sure I have at some point but I don't think through any special testing. Thanks for the good advice!

 
Old 11-20-2009, 03:18 PM   #7
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Re: I feel like a medical anomaly & need answers!

I have not had a colonoscopy but you're right, it's probably a good idea. I'm not sure if my thyroid has been checked but pretty sure it was probably about 10 years or so ago when I was really losing weight. If it's checked through blood, probably yes, but I haven't had any special tests for it. During the 5th month of pregnancy I didn't gain any weight for 5 weeks, however the baby gained weight so at that time my OBGYN actually looked into it and that's when they assumed I was lactose intolerant. After the birth of my son in 1998 I went from 123lbs or so pregnancy weight to about 105 lbs within 24 hours of birth, 98 lbs (pre-preganancy weight) within a week, and to 92 lbs within 2 wks. At no time did I diet, reduce food consumption or begin exercising. I think then my doctors finally gathered that I had been telling the truth and wasn't starving myself lol! Are there specific tests for thyroid?

I'm on day 15 I believe of the swollen right index finger...still nauseous, bad abdominal pains, and RLS has been awful for the past 2 weeks, which is usually the case when I'm sick with anything! I also forgot to note previously that I bruise very easily and developed a dark spot or line above my eyebrow I think 2 years back. It looks like a tan that never went away in that spot, weird. I also randomly kept more summer freckles (was told this was normal) but developed a new patch when it wasn't summer, all around my lips. I don't see any in my mouth. I've read that can have something to do with your colon???

Well, thank you for your advice, it's appreciated and I'll definately ask for those 2 test, though not looking forward to the colonoscopy!

 
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