Mystery symptoms

[ott70]

Part I

So it's been a crazy three months for myself:

38 years old, male, 180 lbs., 6’ 2”

Symptoms (major -- or what I consider bothers me the most): Palpitations, abdominal pain, back pain (lower, sometimes just below ribs), difficulty sleeping on my side sometimes, numbness/tingling in legs and sometimes in fingers and face (both sides), chest pain, joint pain (changes), fatigue

Symptoms (minor): Low-grade headaches, occasional night sweats, changing bowel movements, indigestion, frequent urination, chills, hot "feeling" on skin (no fever), giant papilliary conjunctivitis, epididimititis, flushing, lightheadedness, vision changes (comes and goes), throbbing in left leg (back thigh, can be sharp), ringing ears, possible TMJ (at least some jaw pain), swollen submandibular glands (they’ve been that way for years, but it seems the right side has increased a little mote lately)

*Note on the symtoms, they are over the range of three months. Lately, a lot of the symptoms has subsided or lessened.

Doctors seen: Primary, ER and urgent care docs, cardiologist, urologist, neurologist, gastroenterologist, eyes-ears-nose doctor, alternative medicine

Tests: Blood work (numerous times), chest X-ray, chest CT, echo/stress, holter monitor, head MRI, urine samples, unltrasound on thyroid, heart cath, upper GI, lumbar x-ray, abdomen CT

Findings: Low potassium (back up), low vitamin D (abnormally according to primary), moderate acid reflux in esophagus, mild gastritis in stomach, kidney cysts (one in each kidney), 5 mm non-calcified non-fatty nodule in right lung, high bilirubin

Meds: Inderal 40 mg (but now going with 20 mg half-tablets), Mirtazapine 15 mg, Protonix 40 mg, Pataday and Alrex eyedrops

[idesofmarch]

Also if you have FMS your thyroid test will come back normal unless they did or do the detailed more expensive bloodtest.  An RA if they're good will order a brain MRI to check for MS brain matter (gray areas)?  Good luck and keep up to date on your medical issue knowledge.  Keep a journal of symptoms for the new Dr.  Have them copy it just in case you ever need to stop working .  It will be useful for social security disibility insurance case.  Goes for you to Melissa 70817  Best wishes

[Melissa70817]

Wow...you sound just like me although I don't have some of the symptoms you have.  I have had Bacterial Vaginosis for the past 7 years (very bad thing to have reoccur)  I feel your pain...my rhumi diagnosed me with FM in less than a year but I cannot accept that diagnosis.  He at least helps some of the pain but the other symptoms such as the brain fog, sleeplessness, feeling tired ALL OF THE TIME no matter how much or how little sleep I get, extremely dry skin, hair falling out, depression......I have no help with this... each time I go to him I am put on a different med.  I take about 6 lortabs and 6 soma's a day which helps SOME with the pain but I have not been able to hold a job.  In the past year I have had 2 jobs and looking for a 3rd.  I wish you luck..it sounds like we are both looking for the same thing.... ANSWERS

[PlateletGal]

I think many people with autoimmune diseases and with syndromes such as fibromyalgia and chronic fatigue syndrome have overlapping symptoms. I know I have dry eyes, a dry mouth and I'm frequently thirsty... although I do not have Sjogren's syndrome. I sometimes have pleurisy like symptoms, but I do not have lupus. It is frustrating to say the least... but the treatment protocol I'm on is treating all of these illnesses and sums our illness up as a "Th1 inflammatory illness". Its nice because we can all relate to each other although we have different diseases.

[ott70]

Thanks for the comments. I have an appointment setup next week with a rheumatologist. I guess I'll see how that goes. Maybe I can get someone to finally listen.

[julia111]

Check in at the MS forum - there are a lot of "limbolanders" there without a dx. but everyone is very helpful and informed.

I have a dx. of fibromyalgia but also have a lot of MS symptoms - same as some of your sx.s - facial numbness and pain;  numbness and tingling in hands, feet and legs;  urinary urgency; chest pain; vision changes; fatigue.

MS is sometimes difficult to diagnose or takes years to diagnose and presents itself different in everyone - you'll find a lot of undx'd folks in that forum who have heard the "anxiety and stress" line from there dr.s.

I'm not implying at all that I think you have MS - they just know a lot about everyhting over there since so many things have to be ruled out for the dx.

Good luck!

[luckydzack1]

Your best bet is a rheumatologist. Tell him everything, write everything down before hand, with FM comes brain fog so you are likely to forget things and remember after you have left the office.
With FM misdiagnoses is very comman. My rhuemy figures I have been misdiagnosed for the past 24 years. When this first started with me I was diagnosed with lupus went to a lupus specialist he said you don't have lupus. Did blood test said I had hepatitis. Went for a physical years later & was told I had rheumatoid arthritis. Moved to another province told that doc everything, she did blood tests and said I had nothing. Changed doc's as she misdiagnosed me for years about womenly things & ended up having my left ovary removed because of her misdiagnoses. Found another doc with this flare up I was not taking it is nothing as an answer. He sent me to a rheumatologist which has diagnosed me with FM and says that all the other misdiagnoses was the FM also. I have now been put off of work as this flare started in October & has not let up.
Go see your family doc & ask if he will send you to a rheumatologist.
Good luck
luckydzack1

[ott70]

Part II

Supplements / Vitamins: Potassium 100 mg, Vitamin D 2000 IU, multi-vitamin, herbal tinctures (adrenal glands, thyroid, immune, lymph/detox, kidney/bladder)

Negatives: On just about everything it seems. Heart is fine, arteries to the heart are clear, blood work checks out fine, none of the major autoimmune diseases, thyroid is fine, no concerns about gland in throat. No lupus, rheumatoid arthritis, or celiac disease. Vitamin B level is fine.

Conclusion: So I’m going nuts, right? Stress and anxiety and hypochondriac? The doctors seem to state stress and anxiety. I can agree that stress led to some of the symptoms, but I know my body well enough that something happened to it. The only doctor that has seemed to help is the alternative medicine fellow. His findings so far were a “virus” in my system and a staph infection. Honestly, his tinctures have seemed to help the most out of everything done for me so far. I don't want to be one of those Health channel medical shows where it took years to find out what was ailing me.

I’m not convinced I’m past whatever it is. I would like another opinion but I’m not sure who to go see. Another primary? An endocrinologist? My insurance allows it, but the endocrinology department wants a referral from my primary (who probably thinks I’m nuts by now). I have also thought about a doctor who specializes in chronic “diseases” like CFS and fibromyalgia. Maybe a rheumatologist?

Any suggestions? Any of the above findings I should follow up on? I would like to think that the gamut has been run on me that nothing serious has been overlooked and maybe just something that is chronically minor. I have actually been feeling better lately with less fatigue, so I hope that would mean it’s unlikely something serious is going on (?) Thanks in advance.