Forum Replies Created
Crystal, with all your diagnosises, have you applaied for Social Security Disability? If not then do so this canhelp especially with medical care. I also want to let you know you are not crazy. Doctors do not always know how to treat correctly EDS and we have to educate them ourselves. We have to in some ways become experts in our own conditions and be educators. I would suggest you keep copies of all your medical records, so when seeing a new doctor you have everything right there. I am not sure in the state you live but there is always medicaid that can help with medical care and medications. Also in most areas there are community health centers that may be able to help as they alot of times have clinics for those with no insurance underinsured and also low income. they have many programs as most funding is federal. If not also check with Social Services where you live as they can also help with any resources of medical care where you live. Most teaching hospitals also have different programs as well. Need to investigate the resources in area and state and most importantly ask questions, if one does not know the answer then ask whom may know get names and numbers and keep going. Best of luck.
ChristinaJuly 31, 2011 at 10:14 pm in reply to: Thinning of Retina, EDS, and more pigmentation iris-POss TIa or Occular migraine #1366
No eye drops or anything for eyelash growth. The brown pigmentation seems new. I asked my parents and family and friends that have known me my whole life and none had seen this before. Also it is visible by naked eye. I will definately keep you posted. About 3 months ago I did have a leukemia lymphoma panel done because of still unexplained swelling of right arm with rash. It was negative. I seem to be one of those patients where some things have been found out that was once unexplained to others still no known idea. I also present in ways that do not always seem the norm. I expect may never know the answer to everything but am still vigilent in my learning process along the way.
Maybe you could ask your collegues if they know anyone at UCLA. Any lead is worth is worth investigationg.July 31, 2011 at 4:20 pm in reply to: Thinning of Retina, EDS, and more pigmentation iris-POss TIa or Occular migraine #1362
There are pictures under this heading under eyes-Brown Gold Halo around pupil.
Here are the direct link to see easier.
These were just taken about a month ago and it one of each eye close up. i am keeping close contact with my doctors. The opthamologist is writing a report to my primary care doc about the possible TIA and occular migraine idea, also to let him know to have a refraction done sooner than when i am dur in january 2012 so that with referral from primary doc the refraction will be covered by my optometrist I ahave been seeing for over 7 years. I also see the opthamologist for again in six months unless things get worse with the vision loss comming and going or other things that do not seem the norm.
I am near sited-not sure if very severe but can not see any detail without being fuzzy without glasses on, have astigmatism, diplopia, myopia, ect.
I am seriously thinking of second opinion from UCLA as I have a authorization in place that does not expire until July 5 2012.
Is there anyone at UCLA in opthamology that is familiar with EDS, and other eye issues that may be a good second opinion?
The opthamologist I see locally in San Luis Obispo California is Dr Derek Lauretzen whom is a retina aspecialist. The local Optometrist I see is Dr Douglas Majors in Paso Robles California.
Well the driver was late to my home and had to reschedule appt with dermatologist. Nerxt time get to see is Sept 15. So will know more that day and the driver taking me already has on schedule so there will be no mixups this time.
I see the dermatologist today and will see what goes from there. I will post what I know tomorrow as I will be home late. The endocrinologist is also going to do some more research into mast cell disease and will call when he may know more. Next week the weekly multi vit infusions begin and labs will be done again in 4 months of weekly infusions to see what improvement there may be.
The vertical ridging on nails is actually quite common and as we get older they seem to be more prevalent. Been told they are like wrinkles in a way. If ridging with other nail changes happen then need to make appt with doctor to be evaluateed as it could be something a little more serious.
Have a good day all.
mother1991 aka Christina
It could very well have played a part in the gastric bypass i had. I know the surgeon seemed to do a good job and that was confirmed from an enteroscopy i had in may at UCLA. The intermittant intusseption is beleived to be from EDS, and some of the gastric issues and malabsorbtion may be interlinked with other things as well. I am also looking into mastocytosis and the symptoms from it with me and seems to also be good match. Luckily I will see two specialists at UCLA this next week that i can broach the subject to because one of them will be a new one I see in dermatology and the other is my endo at UCLA as well. He is one that loves challenges. I also know some things have been found in the last year from going to UCLA and others still a mystery and will continue to persue what i can. If need arises I have an auth in place for for UCLA hospitals and clinics that does not expire until July next year so can see other doctors there if need be and explore new avenues. I can also see too have the IV vitamin infusions will do and if if I feel any better. I am willing to share my story anytime and more can be read under the Skin Wird changes in my nails where my whole hystery is mostly posted. I was not diagnosed with EDS until November last year at age 40 but think it has a alot to explain alot of things iin my life. My son also has a d deficiency despite taking supplementation and it seems that many with EDS also have d deficiencies as well. D plays a major in many aspects of our lives. A good website I have found is http://vitamindcouncil.org this has a wealth of info with many many articles and studies on vitamin d in varied subjects. Hope this helps as well. I will relook at the site you posted, I had been there before and read before but need to refresh memeory and think and will answer more by morrow or later today.
If you ever have any questions feel free to post here if want more private chat can email me at [email protected]
thsnks mother1991 aka christina
zinc and magnesium both help with d absorbtion. the burning of hands and feet can be part of secondary hyperparathyroidism, Skin itchyness, and rashes but may not be all attributed to it. I do not know about the parathyroid tumors but if offfer to have scan do it to make sure or ask. Tiredness is a big one too. I feeel tired all the time.
the only problem is I am severely allergic to sulfa drugs and with this med (diamox) from what i read would not be really able to take. I am not sure if i am mistaken on this. Also is not diamox also like HCTZ, if so need to be very careful because of lymphedema as it can exasperate it. But hey I am willing to try different things if it helps even if there is no explanation as to why it may help.
Here is full list allergies, meds, supplements, and conditions. This i think may also be helpful. The supplements may be stopped because of the IV infusions I take will know next week.
**CT Contrast even with high doses of premedication still had reaction of instantaneous hives and itching around face even for a couple of days afterwards negating taking Benedryl
50 mg TID for 4 days. Advised no more Contrast do MRI instead.
**Compazine and Reglan cause Tardive Dyskinesia.
Ambien CR 12.5 mg QHS
Marinol 2.5mg BID
Calcitriol 1mcg TID
Creon 24000 IU 2 tabs with each major meal or 6 per day with food.
Multi Vit IV Infusions Q month
Oxygen 2 Liters at Night
Farrow Wraps for Lymphedema
B12 injection Q Month
Gas x PRN
Tens Unit-Knee pain
**Promethazine and Zofran ineffective in control nausea and have failed.
**Kytril, Anzemet, and Benedryl tried and failed to control nausea.
Multi Vitamin and Mineral/no Copper QD
Calcium Citrate 250mg four time’s day
Vitamin D3 50,000 IU TID
Niacin 500 mg TID
Vitamin A 30,000 IU QD
Vitamin E 400 IU QD
Vitamin K 1000 mg QD
Vitamin B Complex QD
Zinc 50mg QD
Magnesium Citrate 140 mg QD
Vitamin C Ascorbic Acid 2000mg Four Times Daily
Copper D/C 10/1/10 due to high Copper Serum Level
Ehlers Danlos Syndrome Hypermobility (Type 3)
Gastric Bypass RouxNY 2004
Mixed Headache (Migraine/Tension)
Focal Intestinal Metaplasia
Intusseption at Jujunjujunostomy
High Iron Unbound
Low Iron Saturation Percentage
High West Sed Rate
High Vitamin D 1,25 Dihydroxy
Low Serum Ion Calcium
Niacin B3 deficiency
Vitamin B12 deficiency
Vitamin D deficiency
Vitamin C deficiency
Vitamin K deficiency
Low Serum Beta Carotene
High Serum Copper
High Neutrophil Rel
Low Lymphocyte Rel
Chromosome 2p16.3 microdeletion
(Not know more on this but told very rare.)
Lymphedema Bilat Legs
Lipodema Bilat Legs
Pupils Large 4 cm Bilat
Some dryness in eyes
Right Arm swelling rash 2 1/2 years
Marked decrease in strength right hand
**Erosion patchy area afferent jejunal loop. Two clips placed to control bleeding.
Bx report-Flatten Erthymatous Mucosa, Duodenum Biopsy
Small bowel mucosa with focal minimal gastric surface Metaplasia, consistent with healed injury. No features of acute duodenitis.
**Left Knee-Complicated and Chronic tears in ACL and Meniscus tears both lateral and vertical. Mild water on the Knee. Mild arthritis.
Widen Nostrils Age 3 months, 6 months, and 2 yrs
Eye-cut and stretch muscle-Age 3, 6, 9
Adenoidectomy-Age 3 and 5
Tonsillectomy- Age 5 and 26
Tubes in ears 8 times from age 8 months- 7 years
C-Section 1989 and 1991
Lap Choley 1996
Umbilical Hernia Repair 2001
Gastric Bypass Roux N Y 2004
Ventral hernia Repair 2006
Feed Tube Placement 2005
Port Placement 2011- Bard power port right side.
My D has been low for years. Low vitamin D is associated with a condition called secondary hyperparathyroidism. This is where the parathyroid does not work right and the body also does not absorb calcium very well because the parathyroid tells the small intestine not to absorb calcium. It is a way the body thinks it is protecting itself. One test that is usually done to check the parathyroid os a blood test called PTH Intact. This will measure PTH (Parathyroid) and also tests your calcium and serum ionized calcium levels. This helps to determine if the parathyroid is effected but someties it is even with readings close to normal. There is a medication that is a form of Vitamin D 1, 25 hydroxy that is used to help lower PTH levels. Your case may be a bit different. Good thing you have an Endo that will help with this.
I also suffer from malabsorbtion with many vitamin deficiencies. I have trie the supplement route and my levels are still crap. I now get Multi-Vitamin Intravenous Infusions. This was just started at 1 time month but is being changed to one time week. They are also adding extra vitamin C, Vitamin D, and Calcium to my infusions. I had gastric bypass surgery in 2004 with complications since day one one. It is believed I developed what is known as short gut syndrome where the small intestine was shortened for surgery somehow should have still worked okay because only a smaller area was bypassed and the area left sort of stopped working.
I wish the best for you and hope you feel better soon. If you have any questions I will share more if you need on my story.
Also can read more under the heading under Skin titled Weird changes in my nails
mother1991 aka christinaJuly 21, 2011 at 3:45 pm in reply to: Glaucoma or Dry Eye Syndrome & treatment successes? #1323
I also have dry eyes along with other eyes issues. I was told by my opthamologist whom is also a retina specialist that in those with EDS dry eyes were common. If you can try to get to get to a teaching hospital or major medical center to see a geneticist whom would be best bet for diagnosis of EDS. With all the other evidence you have this will be very helpful. GL if finding out what is going on so that you can find out specifically what collegan and connective disease you may have.
I do not have glaucoma.
My dry eyes are still considered mild so I use water washes as need be and close and rest eyes when can.
In relation to GI symtoms I do have IBS like symptoms, have been told when intusseption act up can have gas swelling bloating with pain and nausea in early part and can get worse from there. Was told when this happen go NPO except for light fluids, water, gatorade half water mixture, tea like chamomile or mint, and broth for a day or two and rest stomach gastro tract. If pain symptoms worse then goto ER.
I was started on Creon 24,000 2 tabs each major meal total 6 per day. This helps some but not all of symptoms.
Still seems like some gastro areas a mystery.
Stools run from watery to harder, times slow to rapid evacuation with severe stomach pain and increased nausea sometimes vomiting and I no have stomach virus or bacterium, from normal size to skinny, from baby bright yellow to darker sometimes green. Can have movement from 2-4 daily to 5-6 days between. There is no pattern.
Have taken med flagyll for poss overgrowth bacterium in Jan 2011 but made me so sick for 3 weeks. Even reg antibiotics I can take make me very sick. Talk is if need may do IV antibiotics to bypass gastro tract or watch closely and use antibiotics sparingly.
I do take probiotics daily but have found really no difference than without.
The mast cell disease I will definately bring up when I see the dermatologist on the 27th at UCLA because of the erythema rash and swelling of my right arm that is still undiagnosed. The swelling is worse around wrist. I have had in Sept last an endoscopy and colonoscopy with many biopsies to determine if possible vasculitis, lymphedema, protein losing enteropathy ect. All biopsies were normal except for focal intestinal metaplasia cause unknown but possible to bile. This is in my stomach. ANA, PANCA, other autoimmune disorder tests all negative. In May I had an enteroscopy performed because on a CT with contrast Abdomen pelvis done in March 2011 showed an intusseption at the Juejunojuno stomy. This was also on Ct from Oct 2010 as well. At the time no sign but there was a couple of ulceration patches in the efferant limb and biospies were taken. Also clips had to be placed due to bleeding. Result was thought to be from old injury and healing. Concluded it is an intermittant intusseption. I am not candidate for surgery as thought may have been there before surgery or develope afterward. Because of way reacted after gastric bypass surgery, malabsorbtion, current chronic nausea, EDS, and multiple vitamin deficiencies I am not a condidate for surgery. The doctors feel it will more likely develope again. Right now the intermitant intusseption does not compromise the small intestine. If it does then surgery will have to be performed.
My vitamin deficiencies are Vitamin C which is half what the norm should be so clinically scurvy, Vitamin D 25 hydroxy 18, Vitamin K sometimes, sometimes B12, and Niacin (B3) has come back non-existant. Serum Ionized calcium is low.
My PTH levels last tested May 2011 was 109 despite Calcitriol 1 mcg TID since November 2010. This has risen from 92 to 109 from January 2011-May 2011. I was diagnosed with Secondary Hyperparathyroidism in Sept 2010.
Also conclusion from the Endo is that i also short gut syndrome so absorbtion does not happen with me. The wierd thing can absorb macronutrients but not micro nutrients. No one still knows the reason for this.
My multivitamin infusions will be moved from Q month, just had first one on July 13 to Q week. Calcium, Vitamin D3, and Vitamin C will be added extra to vitamins.
I speak more on this matter to the Endo on monday when i see him. He called me yesterday as he got back from a conference recently. Turns out I was a bit curiosity there as he shared my info with other physicians and concluded the same. We are supposed to talk more indepth on this matter then and some suggestions that were given.
I also just had labs drawn and will know more whe they come in as many are specialized send outs:
Magnesium, Zinc, Serum Copper, Comprehensive Metabolic panel, PTH Intact, Serum Ionized Calcium, Lipid Panel, C-Reactive protein, West Sed Rate, CBC with auto and manual diff, Vitamin A, Vitamin B1, Vitamin B2, Vitamin B3, Vitamin B5, Vitamin B6, Vitamin B7, Vitamin B12, Vitamin C, Vitamin D 25 hydroxy, Vitamin D 1,25 di-hydroxy, Vitamin E, and Vitamin K, and Folic Acid.
It has been consistant for alost 3 years that the CRP and Sed rate are high, almost double than highest norm. Still to this day no one explain this as it ususally indicative of inflamatory process.
The results i do have from new tests is my CRP is 1.08 mg/dL with reference range of 0.0-0.50.
and Alk Phos is slightly high at 107 int_units/L reference range is 32-104. Rest Routine Chemistry normal except BUN 6 mg/dL. I was fasting for this test.
Lipid Normal-have never had cholesterol issues and HDL has always been high.
Folate and B12 normal.
CBC all normal except MCV, and MCHC, are low and RDW, and MPV, are high. Monocyte Relativity low. This seems to be consistant with other labs in past.
Awaiting results of rest.
Can a person have mast cell disease but biopsoies both from esophagus to stomach, small intestine and colon nad some large intestine be normal showing no inflaamatory process, and all tests for autoimmune all normal? There have been no skin biopsies performed.
Can Mast cell disease show up in genetic testing? I had a Micro- Array CGH done and the only thing that came up was Chromosome 2p16.3 microdeletion. DNA fingerprinting agreed to finding but was also partially inconclusive. I will have copies of these results monday when I meet with the geneticist again. All I know from what genetic counselor stated was that this chromosome abnormality is very rare. I can not really find anything on it online but will have more info when I see doctor.
I have lymphedema and lipodema bilateral legs, EDS type 3, seconday hyperparathyroidism, REM disorder, malabsorbtion syndrome, intermittant intusseption, focal intestinal metaplasia-stomach, mix headache tension/migrain, chronic and complete tears of the ACL left knee and menicus left knee, photophobia, amblyopia, presbyopia, strabismus, myopia, some dry eyes, pupils larger than norm 4mm even with glasses off, chronic insomnia, chronic nausea/vomiting, and osteopenia. I do have bone spurs both feet as well. Wierd rash swelling right arm unexplained. I also have hard time adjust body temp, have preiods of extreme dizzyness, low blood pressure or pulse, and I always tired.
I have ridging on all my nails as well. They are soft, and will be break easy. More than likely due to all my deficiencies as well. I have multiple ones. I am now currently getting multi vit IV infusions was for monthly but being changed to weekly. Hope in a couple of moths I am not as tired and crappy feeling as i am now.
Not too sure. Last time copper was checked in Oct 2010 it was high. I also had been on copper supplements. The copper was discontinued and just yesterday, bunch of new labs drawn and copper serum is being checked again. This will take about 2 weeks to get results of copper in as it is a specialized send out test. If copper levels are high again then they will look at possible Wilsons Disease, but my liver is fine at this time.
I do have an appointment with my opthamologist on July 29. He is familiar with EDS and other collegan disorders and is also a retina specialist. I will let you all know what he thinks too.
Dr. Diana if you have any comments on this or ideas to further explore could you please reply and let me know so we all can learn.
here is the other eye cropped a little closer than last