EDS, other symptoms, Rob, etc More to add

[Guest guest]

I just realized that I should list all of my other symptoms to see if there

are any cross similarities between us all. It just hit me now after reading

Robbin's post since I saw a few things I have that Mellisa has ... this

would be very interesting to do a survey on at AJAO.. maybe have people fill

out papers. There is a research data base for Rheumatic diseases... i wonder

if they would be interested.... I always fill out stuff for them every so

many months...

Issadora Age 30

- born slightly premature, had jaundice... never got the initial i can't

remember what it's called but as my mom says 'natural antibiotics' from

mama's milk because of this. In addition, I had immunizations at the earlier

part of when it's time to get them. So in the proper range of time but at

the earlier part. I state these issues because they are both my mom's

thoughts on why I might have the problems that I do.

- Astigmatisim and amblyopia (big words for saying lazy eye and i don't know

what else... LOL). I'm legally blind in my right eye. This has been present

since I was before age 4.. not sure when it started exactly but it's been

there.

- JRA (atypical).. never quite fit the criteria and always have the presence

of a high CRP and ESR no matter what they do

- Fibromyalgia, Myofasical pain syndrome, and once was dx with Chronic

Fatigue syndrome when I was around 7ish

- Asthma (allergy triggered, exercise triggered, infection triggered)

- possible pulmonary fibrosis due to PFT values always showing some lower

value of lung capacity

- Multiple allergies to food, environmental things (dust, mold, chemicals,

certain atmoshpheric changes) and some IGa or ige.. something like that

shows that my allergies are very high... i dont really understand this test

but its something that was told to us.

- Mild Scoliosis int he thorasic spine

- migraines

- Polycystic Ovary Syndrome (PCOS) with Hair An syndrome, over production of

Cortisol, ancanthosis nigerians (think thats the spelling.... has something

to do with some skin discoleration), had a teratoma/dermoid cyst

removed/right ovary/fallopian tube, very painful periods... high risk for

diabetes with PCOS

- Diabetes (Type II)

- now tenosynovitis in the thumbs/hand, have also had archilies tendonitis

or inflammation as well long ago

- flat feet that sorta roll so not completely flat but more so one one

part... wear AFO (Ankle foot orthosis) to correct

- near chronic anemia... or just barely normal... also something with the

MCV? part of the blood cells are frequently underdeveloped (my mom also

seems to have this issue too!!! but no one knows what it is or why).. mine

was always blamed on the JRA. Also, I have a increased bleeding time than

normal. It isn't severe but it's longer than the average norm.

- low grade fevers, heated body, chills

- Immune system issues esp when I was younger, multiple episodes of

bronchitis, infections, ear infections, tonsillitis (had tonsils and adnoids

removed), had shingles, and microplasma pnemonia, and frequent nose

bleeds.... (ear infections and nose bleeds seems to have finally left me

around 6 years ago)...

- skin issues.... eczema, a few psoriasis plaques, dandruff (scalp very

major and allergic to most products), hives, very sensitive/reactive skin,

sun sensitivity,... um, im not sure what kind of light they use in

orthodontisis but every time that I had my braces tightenened or whatever,

the light they had in my face would cause it to dry out and peel and get red

and blotchy rash on it.

- I have a aunt with Lupus.. she got it in her older age which is more

unusual I believe... just random factoid...

- Oh yes, I also have Osteoarthritis in my knees and shoulders and not sure

where else but was told that after a car accident

- slightly enlarged heart

- I've had some kidney thing. protein in the urine showed up on several

occasions but cleared up after removing this or that medication. I also had

a slightly abnormal IVP but I dont know what the exact issue was as this was

around the same time I ended up having the terotoma.. the nephrologist

wanted to do more test but I was too ill and we never followed up because I

never had any markers that made it seem like a big deal. I don't know if

this still is a problem or not but when my labs are checked for kidney

function, they are fine most times

- oh yes and the new sciatic nerve involvement with the chronic back pain I

have had forever. Back pain has increased esp in the lumbar sacral and

thorasic spine. i also have a buffalo hump... nice.... but i think thats

endocrine related.. i think ..

- TMJ... mouth is also rather small so I had to wear braces and have some

teeth removed

- cracking, crunching joints, esp the elbows, left shoulder, ankles, wrists

- nerve pain esp in arms and legs.. not chronic but episodes and this was

long before I was dx with Diabetes so not related to that. Chronic pain in

general. Pain became more consistent and continuous around the age of 14 I

think. Before that, it was more episodic.

*** end of list.. finally... this is depressing but I'm still fighting just

as we all are.. I have some emotional challenges as well with depression but

didn't think that was relevant so didnt list ******

--

" Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI-

Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is

within me awaiting to find a space to find it's flow...