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Undiagnosed Symptoms Community
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Avatar universal

Sick of Doctors!

I was a very healthy man until around age 30 I was involved in an accident that seems to have been the beginning of my medical downhill slide (though I know the accident didn't cause it all).  Even after hearling from bruised ribs, muscle spasms began to mount up and keep me in heightened state of frustration and confusion.  My hereditary essential tremor became exponentially worse, and mild, manageable ADD became severe.  In 1996 I had double pneumonia with collapse of my lung.  Steroids caused significant weight gain and my body rejected penicillin (rash and itching).  Months of Cipro finally got control of the disease, and I began to recover, but the coughing produced unrelenting muscle spasms that required physical therapy. That same year I had a pinched nerve in my T spine and passed 3 kidney stones.  More wrenching and many hours of PT!  For several years my back would "go out" resulting in hospitalization and PT.  The battle with spasms, disorientation and a severe tremor continued. Just to make things complicated I became obsessive about weight loss and exercise.  I lost down to 170 lbs (and I'm 6'2").  I was gaunt and still convinced that I needed to lose more. Health problems drove me to a huge change in my career.  I began to see specialists for various issues.  A neurologist put me on multiple drugs for ADD and the tremor, but my nervous system couldn't handle stimulants.  He put me on Inderall for the tremor, and doses have increased to 240mg to make it manageable.  My heart rate stays in the mid-50s, my BP stays under the 120/80 most of the time, but I have gained more than 100 lbs in 8 years, and my libido is "challenged."  A childhood problem with nosebleeds and sinus infections became a problem in 2000.  Multiple courses of antibiotics didn't kill the terrible infections, so I had my first surgery in 2001.  Infections continued, drugs continued, more surgeries (9 all total).  Doctors at Hopkins have decided that I have no active cilia and that I will live out the rest of my life with pseudomonas and/or staph growing all the time.  I was under the care of an ID specialist and blew through several of the most powerful drugs with no positive results- rather my body began to reject the drugs one after another (Fortaz, Gentimycin, Clindamycin, Levaquin, Cipro, and so on).  All of them produced some type of negative reaction- allergy or side affect- we don't know, but doctors are hesitant to treat me with antibiotics.  I irrigate 3-5 times daily just to keep my throat myself cleaned out.  I have passed several more kidney stones (calcium oxalate), the "fibromyalgia" spasms have kept me in and out of PT (and various alternative approaches to pain treatment), and I lost my gall bladder in 2004.   Ibuprofen was my biggest help, but it got me into trouble with ulcers, so now I take Prevacid to go along with my Lipitor 40mg, and I have very little to help manage headaches, fatigue and muscle spasms that come with the tangled mass of symptoms.  They found a liver lesion in July of this year.  Biopsies say that it is benign, and a follow up MRI indicates no change, but I have unexplained upper R quadrant abdominal pain that my Gastro doc can't explain.  During my most recent sinus surgery I got a nasty UTI, blew through 3 antibiotics to find something I could take.  I also had a strange occurrence of sudden/severe inflammation in my R foot that my family doctor says was either cellulitis or gout.  More drugs, and that's gone, but I feel incredibly fatigued.  I have been tested for everything- In addition to my primary care doctor I have a gastroenterologist, a neurologist, an otolaryngologist, a urologist, an immunologist, an infectious disease specialist and I keep around a psychologist to help me make sense of it all.  I travel monthly to Johns Hopkins, and I've spent every extra penny my family has to try and get well.  I love life and want to live for a long time, but it's really hard to manage.  Friends teasingly call me Job, but it's not funny any more.  Why does my side still hurt?  Is there a connection between the problems?  Will the second half of my life be spent in a constant battle of incurable conditions?  Is this all in my head?  Where do I turn next?
6 Responses
Avatar universal
Try to manage it as long as you can. Maybe some of it is in your head..I don't know..but believe me sometimes I feel like I am going into a downhill slide too at 32. I just have to will myself to stop it and believe in medicine and if you can hang in there the medical miracles are coming soon..everyday...they can grow new fingers now. Go to www.curingdeath.com for hope.

Take care...keep me posted on how you are doing.
488264 tn?1226523907
Can't take in all your symptoms so sorry if advice not quite right.  It sounds to me that you are a good candidate for tradditional acupuncture.  It is one of the best medicines for treating multiples symptoms.  It just seems your whole system, body and mind, is struggling with too much.  This type of medicine treats symptoms as indications of blocked energy in the body, and with a good practitioner the blockages can be undone and the body can start to do what it does best, i.e. look after itself.  Homeopathy works on similar principles, but from personal experience accupuncture has the upper hand.  It has been used successfully for over a thousand years and is based in credible medical research.  When parts of you start to break down, you can easily become absorbed in everything that goes wrong and stop trusting your own ability to heal.  Doctors feed into this anxiety, by convincing you that every problem is their problem, and for them to treat or dismiss or  whatever.  This is nothing to do with your doctors, it is to do with you.  People turn to complementary medicine because its founding philosophy is wiser.  Practitioners show humility in the superior knowledge of the body.  Keep your doctors as you need them, and lose them as you don't.  You, like all of us, are built to last.  Your entire system breakdown is giving you a message, you need an entire system form of medicine.  Modern medicine struggles with this concept.  If you are acutely ill, and need urgent drugs or surgery, go to your doctor.  Otherwise, in your case, steer clear of them, and find more holistic practitioners.  I am biased, I am utterly dependent on pharmacy drugs and doctors, who I despise, and they don't relish my visits either.  The day I can break free of their nonsense diagnoses and treatments (I am now dependent on painkillers and partially disabled from their efforts) will be a happy day for me.  Get yourself out of their grip while you can, and get the treatment you need from highly qualified alternative doctors (research carefully).  I hope you find good health soon.
Avatar universal
I won't go into all my history and symptoms but I can relate. It's not in your head. Don't let thoughts like that enter your head. Two things you mentioned stood out. The stones and spasms. Please check out info on www.parathyroid.com. Docs told me for years I've been tested for "everything." I looked back over my records and could find where I was ever tested for my PTH levels.  This might account for a lot of your ailments. It's possible that it might account for all of them, but some of the things you mentioned aren't really associated with this disease. You may have more than one thing going on. Please check out the website, it's run by the lead doc on the parathyroid gland. It's very comprehensive and easy to understand. I think it'll help you a lot. Good luck.
Avatar universal
Frustrated64,

This is my first post on here..so forgive me if I am rambling...
In all your conditions...you never once mentioned your diet regimine.  Are you eating fruits and veggies?  Dairy? Soy? Meat eater?  Wheat? Processed foods.  Do your docs ever ask? Just curious.

NSAIDs, asparin, antibiotics, pain meds....those rip up your stomach.  Thank god for tomato juice, almonds, whole sour dough bread, ginger ale, club soda and alkazelter(which contains aspirin)!  My stomach can barely tolerate all the pain meds and 'other' meds my doc has me on.  And in a pinch, you could pour a 1/2 c of club soda, lime, bitters, and a pinch of salt for home made alkaseltzer, sans the aspirin.

I have been going thru similar problems(maybe not as severe as yours) and I hope that one of my many docs finds a way to make them stop.  I have even been doing mental therapy to treat anxiety from all this health stuff(it is stressful!). It helps relieve stress, making the symptoms less severe.  I highly recommend it.  I have had many sick relatives that this helped ease pain(from heart problems).  Medidation is good too.  But, when it is in a controlled environment with a trained expert teaching you how to do it...it is so much easier to relax.  :)
Doesn't make it go away, but, def. makes it much easier!

Good luck to you!
Mel n.
470024 tn?1242512706
Have you seen a Rheumatologist? I really think with all your issues you need to be tested to see if your body is attacking itself. Which it sounds like it definitely is. All of this isn't in your head-pain like you describe doesn't come from no where. I know how you fill. Even people in my family thought I was faking until I was approved for Disability and diagnosed with multi-auto immune issues. I understand the kidney stone issues you speak of-they're hell aren't they. I had three surgeries, 6 lithotripsy's, two hospitalizations and two ER visits due to those lil' bastards. Ahem, excuse the language. I've also lost my gallbladder and promptly developed Gastritis and Ulcerative Colitis. I have to take Aciphex and Cholestyramine to help with the over production of bile. Also, have your Vitamin D levels checked. People who suffer with chronic pain are often found to be deficient. I wish you the best of luck and you are in my prayers.

Sheilathatsme
Avatar universal
What happened and why so many? I have been afraid to stop my Allegra D because of sinus infections I get. you said- “Sinus infections became a problem in 2000. Multiple courses of antibiotics didn't kill the terrible infections, so I had my first surgery in 2001. Infections continued, drugs continued, more surgeries (9 all total). “

What do you do or use? you said- “I irrigate 3-5 times daily just to keep my throat myself cleaned out.”

I went to PT and this did wonders for me, BUT later I it flared up again & I have not been able to find another PT as good as the first one. I feel your pain. you said-"Fibromyalgia"

This is kind of creepy to read some else is living the way I was/is. you said- I lost my gall bladder in 2004. I had my gallbladder removed this time too, and was on Lipitor and one other RX and now on some other stomach RX, but later had polyps removed from my stomach. you said- " Ibuprofen was my biggest help, but it got me into trouble with ulcers, so now I take Prevacid to go along with my Lipitor 40mg."

I went to my doctor's fill in (he was out of town) and he said to me you do not need these pain medicines, I said yes I do! He said you need to learn pain management! Boy I wanted to show him my pain management plan for him! He gave me 2 pills, and said deal with it. You know what I was in SOOOO much pain and took one late that night and then I didn't take anymore from that day forward. The next time I saw him I went up to him and shook his hand and thanked him for helping threw my pain management. I took alot of 20 minute hot bathes to get me throught it. Two years ago I was told I have a Left Bundle Branch Block.

I noticed you never mentioned an Endocrinologist on your list of doctors. I just met my doctor and he is also researching why my white count has been high for at least 15 years. No one doctor could explain this. I have to have a ACTH test tomorrow at the Hospital. Checking my adrenal glands. With this endo. we are looking into all relation (Diabetes II, Fibromyalgia, CFS, and my Heart problems) are leading up to Subclinical Hypothyroism and maybe more?

I hope your doing better; I feel your pain, anger, and fatigue. I just found out a year ago I have Subclinical Hypothyroism and was not being treated for this. I got reemed from my GYN, and 3 other doctors who have looked at my chart. So I changed doctors and now I am on Levothyroxine for now, I was feeling wonderful but it only lasted a few days and I have more testing to do before he ups the RX. We are waiting for futher testing before increasing the doses. When I was diagnosed with Diabetes Type II I went to a dietitan and changed my eating habits and mangaged to lose 50lbs with diet and exercise for about 4 years until the thyroid issue.

Good Luck, try to keep a stiff upper lip and I find it helpful for me to slowdown and try to relax the anxiety I am not as tensed.
Wish you well,
JsType2
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