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Sick for Five Years and no answer yet

Hi, I'm a 26 year old man from Kansas, I live with my parents.  September of 2008 I began Testosterone injections for my Low Testosterone syndrome; began low at 50 mg and we worked up to 300 mg for a year; then the head aches came and were constant and then my left eye twitched and popped; it was now unable to stand light of any kind, the next week the right eye did the same, then my eye sight went from "eagle eyes" to almost blind, light sensitivity, next went my ears and became sound sensitive, teeth began to chatter.  At the ER I was told I had Grade A migraine head aches.  Many years, everything got worse.  the head aches are constant and getting more severe, same with the light and sound sensitivity and teeth chattering, then all of a sudden weight gain from no where and I'm eating very little.  I can barely walk, barely get out of bed or a chair, extremely weak, fatigued; can't handle a car ride of any distance.  Yesterday, making breakfast for my mom, I fell into our old fridge.  Now I am having pain in the bones of my face and jaws, hands tremble, my memory is fading, this illness is getting the better of me every day and is getting progressively worse; and our doctor can't figure what it is and now is not believing my parents and I when we tell him of a new symptom or a symptom is getting worse.  My strength in my hands and grips are gone.  I could go on, we would like to know what it is that is wearing me down to nothing.
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Avatar universal
Hi there. You poor man! I am in the Uk, just an ordinary person with C.F.S. I tell you this because we are not even told our blood group here! As I understand, patients are told everything in the US.
If I was that bad I would beg, borrow or steal some cash to start off with a private Neurologist consultation.
From all that is happening to you, you have to start somewhere. Tell your doc, don't ask, that you need to see a neuro.
It might even be something to do with your injections as all these things seemed to commence from the time you started them.
This is just a Mum's common sense reply, but if you were my son that's what I would suggest. Also, seems as if you need a detailed blood screen.
I know about various aspects of your problem but all together must be a nightmare.
My daughter, 30s, visited the ER 12 times. The last time we went I got my notebook out and wrote everyone's name and what was happening. The doc asked me why and I told him we were bringing an action of negligence against the hospital. In 5 mins my daughter was admitted and had every test known to man! She was in for 3 weeks and what do you know,  a diagnosis! Maybe that's the way to go!
I urge you to drive the medics crazy, and if you have the cash, see a private neuro. Good luck and wish you wellx
Helpful - 0
1530171 tn?1448129593
Hi aj26714.

Hey aj26714. Welcome to the forum.
This has become a systemic condition, which unfortunately was not addressed and treated earlier before reaching a state of total imbalance
and dysfunction but for a valid reason: Most physicians have limited knowledge in testosterone issues.
Nonetheless,you will need a very open and co-operative Endocrinologist who will give you a lot of his/her time, and or a Naturopathic Doctor knowledgeable in Adrenal/Hormonal/Endocrine issues to help you get out of this.

You may have inadequate testosterone levels, specially free testosterone,
even with injections. Your threshold could be higher than most labs.
Labcorp has raised their range to -350 ng/dl, while most other labs are at
-280 ng/dl. many men are experiencing symptoms at 400 ng/dl and higher!

Also you should get a complete male hormone panel, including estradiol
, thyroid (Free T3, Free T4 and reverse T3 - NOT TSH, T3 & T4
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