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Old 03-31-2008, 11:49 PM   #1
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Living2BWell HB User
Angry At the end of my Undiagnosed rope

Hello Everyone. I am 27 years old, and have been suffering from a wide range of symptoms for about two years (my symptoms began after I had reached solid recovery from a long term eating disorder, which I have been comletely recovered from for almost 3 years). I have adult ADD, and generalized anxiety and see a psychiatrist about once every three months for meds.

As for my "mystery illness", I've been to just about every doctor under the sun, one of which even told me to get a second opinion with a psychiatrist (after I told him that I have talked to my own psychiatrist and she does not think my symptoms are psychosomatic in nature).

I've had just about every test known to man, had my wisdom teeth pulled (and since developed severe TMJ), and underwent a tonsillectomy late last year in hopes to not be sick all the time (it helped, but my illness has shifted rather than gone away!) I have been referred to, and referred out - so many times, and have even had a doctor tell me he didn't know, and there was nothing more he could do for me.

I was Dx with autoimmune thyroiditis a couple of months ago after an ultrasound of my thyroid, and am on Levothyroxine. But I don't feel better (except for maybe having more energy, otherwise I probably feel worse).

I am just at the end of my rope. I have another doctor's appointment today at 11:15am, with an internal medicine/endocrinologist. I am finding my declining physical health to be seriously impacting my emotional/mental health. I am only 27, but I feel like I'm in my 80's ! I am nervous about seeing this doctor tomorrow. Part of me doesn't even want to go. I can't take another let down. I just don't want to be sick anymore. I want to be well.

I had stumbled upon an article on on CFIDS yesterday (Chronic Fatigue & Immune Dysfunction Syndrome) and it sounded a lot like me, but again, I don't even want to "go there", because I don't want to get my hopes up.

I don't want anything to be "wrong" with me, but at the same time, I am almost looking for something - anything, I am grasping at strings, because with a diagnosis comes hope, and treatment.

I am just putting this out there, incase someone stumbles upon it and it rings a bell. This is my "symptom timeline" I guess you'd say. Well, thanks for listening.

Symptom Timeline



June/August 2006:
• Doctor put me on Cymbalta
• Moved into condo
• Body still healing from past with eating disorder, things seem to be going well (recovered since early 2006)
• Quit Smoking (smoker for 10 years)
• Oral Surgery (Wisdom teeth) * Slow, painful recovery – symptoms began: Excrutiating headaches, Vision disturbances, Sinus problems, stabbing pains up left side of face, extreme exhaustion, cannot sleep enough (Followed up with my surgeon, exam and x-rays showed no abnormalities in healing)

Somewhere in this time frame I was Dx with ADHD and put on Adderall XR

September 2006 – April 2007
• Profuse sweating despite temperature
• hot/cold sweats
• migraines
• TMJ/tooth grinding
• neck stiffness
• constant re-occurring infections (mostly strep & sinus, continuous antibiotics, no lasting help.)
• energy decreased further
• waves of nausea (seemingly random)
• severe light sensitivity
• droopy left eye (almost partly paralyzed), occasional pulsating of left eye
• memory starts to decline, easily confused, easily distracted
• heart palpitations (saw cardiologist, heart is in perfect condition).
• Dx with insulin resistance (pre-diabetes) and put on Januvia.
• Switched from Januvia to Actos
• Hungry all the time, weight gain
• Switched from Actos to Metformin 500mg 2/Day
• Little improvement in symptoms, not much
• Vision gets really bad, depth perception problems very debilitating and affecting my driving
• Skin begins to burn and itch
• Develop severe restless leg syndrome
• Muscle pain and weakness so severe it hurts to move
• Feet & ankles swelling often
• Short term memory severely impaired
• Ringing in ears
• Pins and needles feeling in feet/toes, constantly getting bruises/cuts, not knowing how/when
• Always at the Emergency Care Clinic, sick non-stop: infections, strep throat, sinus problems, canker sores, etc.

April 2007 – October 2007

• Start going to doctors regularly
• Doctor finds no major abnormalities, refers me to an allergist (allergy tested – normal)
• Xrays, CT Scans – normal
• ENT – blood work okay, ANA negative
• Doctor admits me into hospital in June thinking symptoms might be adverse reaction to the Cymbalta
• Hospital for 1 week, Weened off Cymbalta – start feeling a bit better
• Physically assaulted in hospital – hurt neck (since then I am constantly cracking my neck, constant stiff neck)
• Discharged from hospital, off of Cymbalta, put on Zoloft
• Feel a little better for about a month, but not quite “well”
• Develop constant lingering bitter/metallic taste in my mouth
• Acid reflux gets worse
• Blood sugars not controlled, often very low
• Metformin decreased from 500mg AM & PM to 500 MG AM
• Begin taking ibuprofen or Tylenol to function through the day (control pain, headaches, inflammation)
• Start seeing another ENT
• Tonsillectomy October 2007
• Slow painful recovery
• Sore throat never went away after surgery
• On and off post-nasal drip

December 2008-Current
• Dx with Autoimmune Thyroiditis after thyroid ultrasound and evidenced hypothyroid in blood work, otherwise blood work mostly normal
• Dental work, aggravated TMJ, headaches, neck stiffness, facial pain
• Hot flashes, on and off fever
• Random nausea, occasional vomiting
• Energy decreased
• Bowl problems (bowl urgency or constipation, irregular/abnormal patterns, not well digested)
• Small pin sized bumps on skin, occasionally itchy and inflamed
• Generally just don’t feel well, ever …
• Hand & Feet Severe Pain, Cold/Sweaty Toes
• Body/muscle aches increase (Pretty constant, but gets worse with cold weather)
• Continuous post nasal drip, non stop despite medication and nose sprays
• Sore throat (steady since late October 2007
• Left eye feels gritty and like there’s pressure on it
• Occasional difficulty breathing, feel throat closing

Last edited by Living2BWell; 03-31-2008 at 11:54 PM.

 
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Old 04-04-2008, 12:56 PM   #2
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David1966 HB User
Re: At the end of my Undiagnosed rope

have your doctor check for Lyme disease, wouldn't hurt to get that test. you never know.

 
Old 04-04-2008, 06:36 PM   #3
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tattoogirl HB User
Re: At the end of my Undiagnosed rope

Go to Rheumatologist and get tested for Streptococcal Arthritis. This sounds similar to what I SUFFERED with for years and I FINALLY was Diagnosed!!! Doctors would either TOTALLY NOT believe me or just couldn't figure it out. It was so FRUSTRATING. I understand you being "at the end of [your] rope." I had been In crippling pain since Jan. 31st (check some of my posts). I Had high C-Reactive protein, low Vitamin D, Low DHEA along with the Streptococcal Arthritis. Good luck! If you want the names of the specific tests let me know. Plus start keeping a daily diary of symptoms and also check your temp. throughout the day and note it.

Bella

 
Old 04-05-2008, 02:54 PM   #4
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bethsheba HB Userbethsheba HB Userbethsheba HB Userbethsheba HB Userbethsheba HB User
Re: At the end of my Undiagnosed rope

Double check the side effects of cymbalta and any other meds you may be on...many of your symptoms are side effects of other medications...side effects can come and go at any time....and you can experience side effects that others do not. Don't expect that the side effects will go away after disco'ing only one or two doses. Depending on the side effect, some take months to disappear.

Don't rely on your doctors for this info. I had two specialists tell me that there was no "literature" that said my water pill caused restless leg/periodic limb movements...but surprise, surprise, I haven't taken my water pill for over a year and haven't had restless leg/periodic limb movements since!!! I no longer believe what any medical specialist tells me...I listen to my body instead.

That said, I too, would suggest you investigate lyme disease!

Bethsheba

Last edited by bethsheba; 04-05-2008 at 06:18 PM.

 
Old 04-06-2008, 09:33 AM   #5
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robbielee129 HB User
Re: At the end of my Undiagnosed rope

Wow! I've been there too, at the end of a rope. I was diagnosed with Hypothyroidism when I was 12. (Now 45). In 1997 I started with tingling in my left extremities. My left arm would fall "asleep" and be very painful. Then my left foot started with tingling and it just progressed upward. Finally in 2000 I was diagnosed with Fibromytosis. I'm still taking levothyroxine, but now take prozac for depression (which constant pain & fatigue cause) and Vicodin for pain. I find I have to lay down for at least an hour every day, just to get through. There is no one test for fibromyalgia or fibromytosis and yes it is very frustrating. I find taking 1600mg of Vitamin D a day helps with some of the fatigue. I have a sauna I sit in twice a day for pain and I also see an acupuncturist and a massage therapist. Exercise also helps. I walk and do a bit of yoga. Also, have you checked your condo for mold? Mold really sets off fatigue. Just something else to check into. Good luck.
Robbielee

 
Old 04-06-2008, 09:38 AM   #6
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Re: At the end of my Undiagnosed rope

Quote:
Originally Posted by tattoos View Post
Go to Rheumatologist and get tested for Streptococcal Arthritis. This sounds similar to what I SUFFERED with for years and I FINALLY was Diagnosed!!! Doctors would either TOTALLY NOT believe me or just couldn't figure it out. It was so FRUSTRATING. I understand you being "at the end of [your] rope." I had been In crippling pain since Jan. 31st (check some of my posts). I Had high C-Reactive protein, low Vitamin D, Low DHEA along with the Streptococcal Arthritis. Good luck! If you want the names of the specific tests let me know. Plus start keeping a daily diary of symptoms and also check your temp. throughout the day and note it.

Bella
Bella, can you tell me more about Streptococcal Arthritis? In the early 90's I had acute streptococcis twice. It lasted almost three months both times. Then a doctor told me the strep virus was living near my spine and there was nothing I could do but kill it with high doses of antibiotics. I lost feeling in my left leg and arm. Ten years later I was diagnosed with fibromytosis/myalgia. How is Streptococcal Arthritis treated?
Robbielee

 
Old 04-06-2008, 05:09 PM   #7
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tattoogirl HB User
Re: At the end of my Undiagnosed rope

I am on high doses of steroids and Percocet for pain which they want to wean me off from. Soma and Valium. They also use high doses of, for a long period time, Penacillin(sp?). If the steroids don't help then we will try that. There is an "active" phase and a "post" phase and when you come in contact with strept it can "re-activate". I will give you a LONG list of my symptoms and see if you can relate:
-sudden onsets
-stiffened body esp. shoulders, arms, wrists
-difficult to pick up and move things
-feels like every bone in my body is in crushing pain
-muscle spasms and pain
-sharp shooting pains in wrists, hands, knees, legs, ankles and feet
-fingers, wrists painful to move/bend
-difficulty with cooking, cutting, writing, turning doorknobs etc...
-numbness/tingling/bug-like sensations through whole body and sometimes in just 1 or 2 areas at a time...things go numb for no reason
-all joints painful and feel swollen and/or visibly swollen
-feet/hands get extremely cold and clamy...then red, hot and swollen (always some swelling but increases throughout day)
-hot/cold flashes throughout body
Uticaria/itchy rashes
-bruise easily and takes a long time to go away
-extreme muscle soreness and cramping
-hair loss/dry flakey scalp
-difficulty sleeping
-exausted, spacey, short term memory problems
-anxiety, depression
-weight gain
-swelling in hands and wrists get so bad they look knarwled and cannot fully open
-temp 97-103 daily
-pain spreads throughout body
-throbbing burning aching sesations
-neck/back feels as if bones are fused together/stiff
-even days I "think I feel better" once I start activities pain and swelling increases
-morning I ache so bad I feel like I am 82 not 32
-hards, lumpy arease esp. wrists and lower arms
-can't sometimes walk, dress, bathe etc....

These don't always occur at 1 time but on a daily basis at least half are present. At first it was ALL happening...it got to a point I totally thought I couldn't go on. The Percocet was the ONLY saving grace but doctors are SO reluctant to prescribe narcotics. A lot of doctors thought it was "in my head" or just couldn't figure it out. I SUFFERED FOR SOOOOOOO LONG! I finally found a Rheumy that ran the proper tests and was DX'ed!!!. Good and bad ya know.

So what is going on with you? Do you want to know anything else? I wrote so much I thought I'd better stop before your eyes went bananas.

Bella

 
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actos, adderall, cymbalta, januvia, levothyroxine, metformin, soma, tylenol, zoloft



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