[Tb12]

Hi Lara

Thanks for your message

Did you mean you think it could be Lyme? Or no?

Gynecomastia was found when I was in my mid teens and they operated and it has come back now but the only explanation I get is that it must run in the family.

As far as my elevated spinal fluid and pseudopapildemia that was found from a eye specialist who then referred me to a neuro and they did the spinal tap... They put my on medication and then 6 months later said if the medication is annoying you, you can stop it as the spinal fluid wasn't that elevated but it was over normal and both those issues were never spoke of again..

I went to one endocronologist whilst all this was going on and she took bloods and then said all looks good but vitamin d.... Then dismissed me..

I also currently have a raised CRP, ESR, Ferritin ... But drs don't know why and again are dismissive..

If that helps paint a better picture..

[Lara]

Hi again,
I thought the Gynecomastia had occurred in the past few years with your illness. I couldn't see where that would fit with a Lyme illness and had wondered why you asked about Lyme in your first post. Thanks for clarification.

[Tb12]

Hey Lara

Thank you for your message

Did you mean you think it might be Lyme? Or not?

As far as a endocrinologist, I have seen one in between all these symptoms she took bloods and said low vitamin d and then dismissed me and my symptoms.

I do have a elevated CRP, ESR and Ferritin that dr's don't know why.



Gynecomastia I had as a teen and it was surgically removed and now is back but no dr or specialist can tell me why it happens..

A eye specialist found my psuedopapildemia and sent me to a neuro who did a spinal tap and said it was elevated and put me on medication and then a few months later said it wasn't that high so you don't have to continue the medication but he never retested the spinal fluid level.. So for all I know I have idiopathic intracranial hypertension... With no answer why or what's going on? Again dismissed by neuro..

I have been dealing with white worms, black floaters in my eyes for years, as well as burning in them and feelings of fluid in my head I can swish about and feel it move with no answer at all!

I went to a ENT specialist to see if I could get any answers and they did a tilt table test or something which sent me dizzy and I almost past out and then they said you do get dizzy and sent me on my way again as they obviously didn't find much else...

Brain MRI has been fine besides a 15-20 white non specific dots..

So yeah that's where I am at on top of everything else I gave expressed..

[kiwi33]

Hi Tb12

As far as your low levels of Vitamin D are concerned, you might might find it helpful to search this NT forum; http://neurotalk.psychcentral.com/forum49.html . I would be inclined to focus on what mrsD has contributed there - her comments are always evidence-based.

"I do have a elevated CRP, ESR and Ferritin that dr's don't know why."

My understanding as a scientist is that all of these can, but need not, indicate an underlying inflammatory issue. Sorry that I can not help more with this.

[mrsD]

Hi Trent. I have been thinking about you... so I am sorry I am late to your thread.

Let me just list some ideas:

1) gynecomastia in a teenage male, who is not using antipsychotic drugs for psychiatric reasons, can indicate Klinefelter's syndrome (aka Fragile X). These drugs can cause breast enlargement in males.

These males have an extra X chromosome. This is not hereditary, and is thought to be an accident that happens when the egg is first fertilized. These males can often have low testosterone levels, which impacts bone strength and muscle strength and functions. Many males can go thru life and never be diagnosed.

http://www.medicinenet.com/klinefelt...me/article.htm
There are many other sites on the net for this that you can find easily too, to read more. Each male's experience can be different with this syndrome and symptoms vary quite a bit.

2) I wonder if you were exposed to pesticides and weed killers when you worked in the garden. Your fast onset seems like a poisoning of sorts. Pesticides do irritate the neuromuscular junction where the efferent nerves connect to the muscles to cause movement. A severe form of this problem is called Myasthenia Gravis...where that junction is attacked by antibodies to the proteins there. There are antibody tests for this, but many have seronegative results. We have a forum here on this topic.

3) Elevated ferritin in a male is problematic. It may signal hemochromatosis...iron overload. I'd get that looked at further.
As the iron builds up, it affects, the whole body and can be ultimately fatal over years of dragging one along.

http://www.niddk.nih.gov/health-info...ges/facts.aspx
This however does not suddenly occur like your symptoms have. But you may have just crossed a metabolic line, where the build up became obvious and symptomatic.

These three things are suggested by your symptoms so far.

I'd get tested for B12 levels, and make sure you have at least 400pg/ml... Many doctors accept very low readings still as "normal".

I'd also try a magnesium chelate product (not oxide) as a supplement to see if your twitching lessens. Muscles not getting enough magnesium will twitch and cramp. The dose would be about 200mg elemental of magnesium citrate, malate, taurate, gluconate, lactate... whatever you can find.

This is my magnesium thread:
http://neurotalk.psychcentral.com/showthread.php?t=1138

You can also soak in lukewarm epsom salt baths, and see if this helps too. If it does then you can assume your body needs magnesium.

[Tb12]

Thank you so much for your insight and advice msrD it's so greatly appreciated!

I will be looking into Klinefelter syndrome and getting a test, which specialist would be best to get that done from? If you know?...

One thing that truly scares me is klinefelters is a X chromosome problem and kennedys disease is a x linked mutation problem, does that have any correlation or put me more at risk for kennedys disease?

If you know much about how the genetic blood works.

[mrsD]

There are many X mutations .... but those people still just have one X if male.

Kennedy's disease:
http://www.ninds.nih.gov/disorders/k...s/kennedys.htm

Klinefelter's differs in that the male has TWO X's and one Y.

It is a whole other issue. (and is not hereditary).

Kennedy's is a mutation, and would appear in your ancestry if you could find it.

Klinefelter's is an error of cellular division in the beginning embryo. The only way the two could occur together would be if the patient inherited the mutation on one of the X's from his mother to give Kennedy's on top of the Klinefelter's. That would be pretty rare, I think.

I think any doctor can order the test for Klinefelter's. My son told me about this last year when a guy he worked with went to the doctor because he was having trouble building muscle at the gym. He was working out alot and getting nada results. His doctor tested his testosterone which turned out low...leading to the DNA test for Klinefelter's.

If you go to the Klinefelter site it might have more details for you:

https://www.genome.gov/19519068

[Tb12]

Thank you so much for your quick reply...

I was researching whilst you Messaged me about klinefelter and realised I had a secondary and third issue

I had hypospadia as a child and needed surgery, I also had walking issues that went I diagnosed...

On top of my ongoing gynecomstia and believe it or not I was a avid gym junkie that could never put muscle on and gained weight even tho I ate healthy..

Last time I get my testosterone levels checked I was just on border line of it being normal...

Does that rule this out? Could klinefelter be cause for a lot of my issues? Or?

[mrsD]

Yes, you have many of the signs. Finding out now would be a good idea.

There are disorders (mostly autoimmune) more common in Klinefelter's males. Once you have this identified, you can then get prompt diagnosis later if any of those autoimmune diseases spring up.

There are many degrees of Klinefelter's depending on how many cells are affected.

You might be able to find a doctor who treats other Klinefelter patients in your area too.

[Tb12]

Thank you again mrsD ..


You are invaluable, just a quick question, I have had a terrible run with drs in Melbourne Australia, I find them very dismissive and not very knowledgable, I learn more and get more information from the forums like this..

I'm curious if you know a site or anything that has links to really good GP'S and specialists in my country and state or how I would go about finding good professionals in my specific areas..

I bet if I went to my GP tomorrow and mention klinefelters he would be googling it and then give me some reason why he can't test... That's basically what I get from the drs and then they just want to hand me pain killer prescriptions or repeat routine bloods I have had dine millions of times.

I'm loosing hope.