Just Introducing Myself

29 years old. Diagnosed with thal-minor @ age 22. Had the blood work done because of sleep paralysis and fatigue. Since most Docs say that the minor has NO symptoms I just forgot about it. Since then I have been Dx with Idiopathic Hypersomnia with cataplexy. The Dx was going to be Narcolepsy but since I was having no Catapletic attacks during normal hours, and never hit REM during my MSLT they just said it was Idiopathic Hypersomnia. I am still always fatigued, constant muscle cramps, pins and needles in my extremeties, and cannot do any (serious) excercise more than 5 minutes or I feel as though going to need at O2 mask.
 It has been a very uphill journey for me with doctors. My major in college was Human Medicine B.S.
Because of this the docs think I am just scared of the things I learned.
  Not True 'No Fear' Man. Just fix Me.
Anyway in pathology, genetics, hemo.. they all said no symptoms with Thal-Minor. So it was never even given a second thought.

Im glad I found this site. Really changes the way I am going to start heading with the tests.
Great threads and posts.

Glad 2 Be Here
WB

  Waterboy   

I am asking all thal minors with symptoms to tell their doctors they believe the symptoms are related to thal and to also tell them there is a group with many people who are thal minors who say the exact same things about symptoms. Ask the docs how can it all be in their heads and how would it be possible for them all to express these same symptoms. The only way the docs will change their view is if patients speak up.

Best luck to you and I hope we can be of some help.

Welcome Waterboy and we are happy to have you with us.


Andy, would it be helpful for thal minor (with symptoms )  to transfuse once, could be annually to avoid these symptoms or it is not medically recomended as they could have high hb

Manal

Manal,

I don't think an annual transfusion would help much, as transfused blood doesn't really last very long (weeks, rather than months). I also doubt whether doctors would be willing to transfuse someone unless their Hb level indicated it was necessary.

Hello Waterboy and 

Thal minors do have symptoms, i am one big example of it  i think we minors should sue the doctors who make fun of us by tellin g thal minor has no symptoms  .

ZAINI.

I just ran across this while looking for some information about thal intermedia and was surprised to see this admission.

http://journals.elsevierhealth.com/periodicals/ymai/medline/record/MDLN.9668554

In contrast, there are simple beta-thalassemia carriers who, for unknown reasons, have an unusually severe clinical phenotype.

Every thal minor who is brushed off by his doctor should go to that article and print it out and take it to their doctor. Thalassemia is complex and factors besides the basic genotype have moderating effects, some positive and some negative.