Originally Posted by daniella

Hi
On the thought about chronic pancreatitis. I had this about 6 years ago pre all of this. Anyhow I did not have all the symptoms either but after testing I was dx with it. Im not saying you do but I dont think you have to have all the symptoms. I was placed on a special diet and my bloodwork was monitored etc.
I am sorry you are not getting answers and in my experience it seems that most doctors only stay in the speciality they are in. What I mean is that they dont connect symptoms always. So it does not surprise me that the neuro felt the gi is separate. It may not be connected but sometimes I feel they just dont want to go out of the specialty they are in.
Have the doctors suggested any type of meds or treatment? Have you been tested for Lupus?

Originally Posted by pg600rr

Background:

I was a very healthy 29 y/o, best shape of my life, gym every other day, running every morning, zero health problems and no meds. Started having 'off' days last August, maybe every other week were I would have GI upset. Then had a few prolonged periods in Sept.-Jan. of 3-5 periods when I'd feel pretty bad.

Mid-Feb. everything went downhill fast. First presented w/ extreme GI upset, 24/7 nausea, no appeptite, bloating, gas, fatigue, malaise, etc. Was in/out of ER, given fluids and sent home each time due to CBC being OK. Scope was eventually done, they found mild esophagitis and 3 distal ulcers in esophagus. Thought that was why I was feeling so bad (didnt really make sense tho) and month later recheck showed it had healed itself. Through March continued to feel worse, symptoms included:

Symptoms (past & present):
-GI symptoms (nausea 24/7, gas, bloating, distention)
-mid back pain (dull)
-very fatigued 24/7
-chest tightness
-orthostatic tachycardia [diagnosed with POTS by Dr. Freeman @ Beth Israel]
-lost 18 lbs. 2/25-3/15
-unable to gain much weight back
-not sleeping (getting up sometimes 3x night to urinate 4/6/8am)
-constant varying levels of dizzyness/lightheadedness (usually worse when I stand up from sitting), will get numbness on forehead sometimes, feel like passing out sometimes
-feel very cold alot, especially hands and feet
-whole body feels very sick
-sporadic dull headaches (usually just above/behind eyes but varies)
-muscles in legs, arms upper back feel tight/achey from minute I wake (horrible feeling) worse in the a.m., will have for a week or two then not for a few weeks...
-left side gland under tongue (almost feels swollen on the inside, like something is in there) can pinpoint exactly where this feeling occurs
-usually have feeling of adrenline rush through body upon waking in the a.m.
-neuro noticed left hand temors upon evaul
-very sporadic, non-itchy rash, just blothcy, usually in center of stomach/chest area, sometimes on neck or ribs (havent noticed in atleast 4 weeks) [see pics]
-eye doc has been following left eyelid droop (may be caused from Lasik surgery I had done in 2010)
-sporadic cheek muscle twitch left side
-sporadic eyelid twitch left side
-restricted breathing through nose (often have to sleep breathing only through mouth)
-sometimes get sensation of clogged/forced swallowing @ top of throat, feels farther back in head, around point where sinus cavities emptying into top of mouth/throat (almost like traying to swallow with your nose plugged)

From 2/25 till now I have been to all major Boston-area hospitals, seen 16 specialists trying to figure out whats going on. So far they have not found much except for "mild" POTS, borderline lyme WB's, some atypical lymphocyctes (8%), and most recently, the big finding, NLD-SFN, biopsy was normal at right calf, abnormal at thigh. Currently, many of the symptoms above have changed or lessened. The major ones continue to be the GI and the feeling in my legs (sometimes shoulders/arms to a lesser degree).

Testing I've Had:
90+ pages of blood work
EMG
EKG (multiple)
Echo (multiple)
Holter (multiple)
UGI w/ small bowel
Upper Endoscopy
GES (normal, although doc said it could have been a good day)
Breath Test: SIBO, lactose, fructose
Allergy Blood testing and select skin testing
CT: Abdominal/Pelvis/Chest/Sinus
MRI: Full Spine and Brain
Autonomic Testing x2 (cardiovagal, adrenergic, and auxiliary all normal, sudomotor showed sweat output was normal but QSART showed length dependent pattern w/ a decrease of sweat output distally atleast 33%)
Skin punch biopsy (showed NLD-SFN, nerve density reduced 52% @ thigh, normal at calf)

Questions:
I have yet to really get into see a specialist in SFN or the NLD kind. The nuero that diagnosed mine said that it was "mild" and some with this level of damage might not even experience symptoms, so I dont understand why I feel like I am dying most of the time! So I do have a few questions, any comments, suggestions, thoughts, answers all welcome :-)

1. do the sensations I am describing sound SFN related? I have NO burning, stinging, tingling, numbness, etc. it is like a jello-y, tight feeling, very unpleasent, comes and goes, mainly in glutes, thighs, and calfs (weird because biopsy showed no damage in calfs...) why would it be in the calfs if no damage there?

2. If the sensations are being caused by the SFN shouldnt they be somewhat consistent and not cycle?

4. read about dorsal root ganglia damage sometimes being related to NLD-SFN..how would this present? my neuro said it is not relevant to me, because my EMG was normal, I have no coordination or muscle weakness problems, and no difficulties with sensing heat/cold/vibration...

5. anything specific I should I have my PCP doc testing for to find an underlying cause given the acute onset, the progression, results of above tests, my age/health, symptoms, etc.?

Thank you so much!

Originally Posted by daniella

Hi sorry for my late reply. I had a ct scan of my stomach where I drank barium I think it is called and this was after my liver enzymes in blood work and other was off.
Have you thought more of sending your records to Mayo?

Originally Posted by ginnie

Your State senator, or Congressman, may have some options for you regarding getting funding to go to mayo clinic. My friends held an auction for me when I first got sick, which paid for my first surgery. I sure hope you can get to Mayo. that is where I was diagnosed and at least figured out what was wrong with me. I wish you all the best. ginnie

Originally Posted by daniella

I would call Mayo's billing and explain your situation. They may be able to suggest something or I think some are non profit so will work with you? I am not sure about Mayo though.
As for the pancreatitis and I guess I am asking you this does that create nerve problems? My past pancreatitis issues and now nerve problems I never thought of a connection.
You stated gi issues but what about bowel problems?
I know you stated you are not being treated with any meds but I wonder if you have tried any dietary changes? Have you thought about seeing a pain doctor?

Originally Posted by en bloc

I really think you should consider adrenal function testing. It can cause nausea, POTS, fatigue, frequent urination...frankly everything you list. I too have some similar symptoms and just asked about it myself. I have a ACTH cortisol/cosyntropin challenge test set up for Thursday first AM. Your mention of the adrenalin rush might be key. They always test adrenal function first am because cortisol increases as soon as you start moving in the morning.