Major Complications Almost 6 years-Chronic Nausea, vomiting, pain, severe...

I see the gastrointerologhist on Oct 27 for a follow up of the al biopsies and other tests.  i also have a follow up with the endocrinologist same day.  Not sure what results are as of yet but when the endoscopy was done with a pediatric endoscope they did a modifoed ERCP.  Told the endoscopy and colonospy was unremarkable except for a small area of concern so more biopsies were done in that area.  But i had many done in various areas of the small intestine, roux limb, and with the colonoscopy as well.  the endoscopy went all the way down to end of small intestine.

I tell you the marinol is great stuff even though I get buzz from it but it makes me very sleepy.  Still trying to get insurance to cover it.  they denied it once so in process of getting more info sent to them for reconsideration I also have my local assemblyman also on the case working thier influence from contacts within the state.

All i know i am very tired of getting sick feeling very nauseated and some days barely keeping self hydrated because the mausea is that bad.

Hopefully there are some answers but just need to take one step at a time and do all that is possible.

will update next week when i know more.

Also if not much is found from the last tests then the genetic department may be able to throw some light on the subject.

I got approval for PT so start WED to hopefully help strengthen the muscles to have a better stabilty of joints from being very hypermobile.

All I know is something is going on even the doctors at UCLA know too but trying to find and pinpoint it is this or this could be the proverbial needle in a haystack.

I do know I do tend to present in ways that are not the typical norm.

I hope that in the human genome prodject that I get picked soon so that maybe having all my genes coded could help shed the light in the dark recesses of human cellular and or gene variants not seen that often.

There are just so many unanswered qustions that I seek to always try to find some common thread in the insanity of health issues and symptoms.  May even boil sown to the epigenetic changes from life itself as it ever changes due to external and internal processes so the epigenes are told to turn on certain things that are not supposed to be on or turned off.

Just a quick follow up.  I got a call this morning that the appointment with the follow up with the gastroenterologist appointment is now 8 am and will be longer as per doctor request.  This has me a bit worried as I do not know anything as of yet.  Glad on one hand more time for fiollow up appointment but worried on the other hand that would negate a time difference for the follow up appointment.  I know will think about it alot over the weekend but I know since I do not know anything as of yet it is better to be calm and zen until I know the full details.  So will post more when i know more.

had the follow up with the Gastroenterologist at UCLA on Nov 8.  All the biopsies were normal except a small area called intestinal metaplasia.

Intestinal metaplasia is the transformation (metaplasia) of epithelium, usually of the stomach, to a type that bears some resemblance to the intestine. Initially, the transformed eptithelium bears resemblance to the small intestine; in the later stages, the epithelium resembles the colon. It is characterized by the appearance of goblet cells.

It is considered to be a risk factor for the development of adenocarcinoma.

So since as far as we know vasculitis, protein losing enteropathy, lymphedema of the intestines, other inflammatory processes, and TB of the Intestine ruled out from the biopsies.

The next step since my labs are still in the dumps and I am still not absorbing nutrients there will be a trial of Intramuscular Injections of all the Vitamins from vitamin A, All the Bs but already on B12 injections, Vitaminc, Vitamin D3 and Vitamin D 1, 25 hydroxy, Vitamin E, Vitamin K, and Calcium.  If this shows some improvement then a port will be placed for all the Vitamins to infused Intravenously this is sort of like TPN but is more specific In the Vitamins I need and may not have to be done on daily basis.

Also wants me have another Iron Transfusion which getting a preauthorization from Insurance.  For me they are so fun (facitious) because my veins are not good they are tiny delicate and blow easily, so a central line is placed before the iron infusion and after central line I get the first dosage of iron transfusion before comming home.  This a day surgery thing and done as outpatient, then every other day up to 5 infusions for more of the iron infusion which takes about 2 hours per infusion.  With the central line it is easily done and infused from there.

Other updates with labs my copper level was high even though had not had for at least 6 weeks prior to labs because of a backorder.  So now Copper is taken off the med list and will be retested with other labs in 3-4 months.

I also have an appointment end of November with the Genetics department at UCLA to see if there is anything genetically that could explain part of the malabsorbtion issues and also because I have Hypermobility Syndrome (basically over flexable joints).  I can bend my pinkies on both hands backwards more than 90 degrees, I can touch my thumb to wrist on both hands, my elbows and knees can be hyperextended more than 10 degrees, placing my hands flat on the ground with out bending my knees.  There are a few connective tissue disorders that are dominent (where it  could be about 50-50 chance of passing it on offspring or getting from mother or father) and can affect many areas in the body with varying degrees. 

The other wierd part was in CBC the doctor ordered both the auto differential and and a manual differential where my Red Blood Cells are of uneven size and shape called anisocytosis and this is considered rare but can be detected and formed with anemia or other issues.

I also have an appointment with neurology with the rash swelling of my right arm and hand that has been going for 18 months and still no answer to what is going on.  My strength in my right hand is now greatly reduced and I am right handed, plus a bit more pain too.  Hopefully neurology will know is going on.

marinol for nausea woorked for me but insurance is still denying it so now will have a state hearing hopefully will be before 1st of year, trying to get expediated.  Still getting sick daily but a little more than in past, still tired, still feel unwell, ect but taking one day at time.

Good news my PTH levels are lower from Sept this year from 98 to 72 but this is still considered high but better than before.  I started in September on Calcitriol for Secondary Hyperparathyroidism started at 0.5 mcg twice daily, then upped to 1 mcg twice daily now new dose 1 mcg 3 time daily but at least the PTH is falling which is a good thing.

I follow up with gastroenterologist enf of january, next follow up with endocrinologist is begin of january and the follow up with rheumatology is in january sometime.

So far since Mid July have seen specialist at Stanford for Lymphedema, Bariatric specialist UCLA, Gastroenterologist, Rheumatologist, Dermatology, Endocrinology, with new Nov 29 with genetics, and Dec 9 with neurology so getting there and hopefully can a bit of sanity back in life of some sort.  Not asking for miracle cure all of that it and fix scenario but know that If I get the nausea down by 15-20% I would be ok with that and get vitamin levels closer to a normal level either from injection, intravenously, or via digestive track then I will be ok there.  i know may never really the true cause of everything but some knowledge is better than nothing.

I have stated before I am not the norm and know with the issues i face some you may also being though some sort as well and in my journey for knowledge I hope to be able to help another on the way to better understand thier issues or learn new things that they may not have known that they can discuss with thier doctors.

I thank everyone on the forum for the support and asking questions and i like learning from you all as well as some things I may have not thought that made me look at things from a different perspective.  All of journies are individual but also as a whole support to keep us all moving forward with knowledge understanding and companionship where we are never alone.

Here is a copy of the labs thus far:

Routine Chemistry
All normal ranges except:
Alkaline Phosphate               High
CRP                                          High
Iron Unbound                         High
Iron Saturation                      Low
Copper                                     High

Lipid Panel-  all very good

Immunology/Serology Studies
PTH                                         High -lower from Sept.
Calcium Level                       Normal

Other Chemistries-all normal except
Vitamin D 25 hydroxy         Low
Vitamin D 1, 25 Hydroxy    Low
Vitamin C                               Low
Vitamin B1 (Thiamine)       High
Copper                                    High

Hematology
CBC-  all normal except
MCHC                                     Low
RDW                                       High
MPV                                        High


Auto Diff-  all normal except
Lymphocyte relativity   Low

Other send out tests are not in as of yet. 

As you can see there are either deficiencies in Vitamins and or being high.  Hopefully things can be figured out.
      
Manual Diff-  all normal except
Segs Man                              High
Band man                              High
Lymphocyte Man                  High

Morphology
Anisocytosis          Rare  **Note means the Red Blood cells are of uneven sizes

Other Hemetology
Westergren Sedimention Rate-----High

Urinalysis
UA Macroscopic- All Normal except
UA color                      Amber
UA Appearance           Turbid
UA Leuk Est                25
UA Ketones                 5
UA Urobilinogen          1
UA Billi                         1

UA Microscopicll normal except
UA RBC                        Rare
UA Amorphous           4+
UA Moucus                  Rare

Thyroid Studies  Normal

Quick Update
Have an appointment with neurology at UCLA today.  Hoping to see if anything is going on like nerve damage from abdominable surgeries but my vagus nerve is still in contact as far as i know.  Will give update tomorrow as I will be tired when I get home later.

Have a good Thanksgiving all.

Had appointment with Neurology and the weakness in my right hand arm may be ulnar neuropathy so a nerve conduction test will be scheduled.  Also some other labs were ordered drawn too which are Rapid Plasma Reagin, Homocystein, Methylmalic Acid, Protein elctropharesis, and Urine protein electrophersis.  Will have results in a few days on the labs.  I will know the date of nerve conduction test later next week.

Monday is my appointment with the genetics department and see what more of ideas from there and what else to look at possibly.

So still baffling physicians, but at least making a little groundwork and knowing more as time goes on.

Well saw the geneticist on monday and was diagnosed as having erhers danlos syndrome tye 3 the hypermobility aspect but also affects connective tissues throughout body.  it has chronic gastritis as one things it affects and people can varying degrees in this class as well as the others classes as well.

ednf.org is the ehrlos donlos syndrome foundation website to leran more. .  at least this helps in some of the gastrointestinal issues i have but not all.  taking one day at a time still.

have a good day all.

Someone may have already mentioned this... but have they tested you for gastroparesis.  While for many people its a wasting disease and they shrivel away to nothing, for a small number of people actually GAIN weight even though they are suffering from terrible malnutrition.  All your symptoms are the same as those of gastroparesis and its commonly not diagnosed for years.  Going on a gastroparesis diet may ease some of symptoms and a digestive aid supplement might help with the absorption of the vitamins too.  If you can tolerate it.  I hope you find some health and well being soon.

 
HA!  I should have read ahead to page 2, you do have Ehlers-Danlos Syndrome!  I had a friend that had a significantly serious problem with her ED Syndrome.

If you have any children you should have them tested, it is genetic.