NeuroTalk Support Groups - My symptoms, please help, any advice and anyone similar on this board?

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Another thing I want to note that I have and am also using this to track symptoms is ....

A overwhelming amount of petechia blood dots all over my body, they are just doubling and doubling daily..

I have constant rib pain even when I breath in or sneeze and it's sore to the touch been like this for years..

Bleeding gums and also had blood coming from penis and in urine.. It's on going on and off and yet again no answer at all to any of those issues either..

When I got my blood pressure done and they take the machine off my arm it's like ten to twenty petechiae appear in lines.

causes, of petechiae

http://www.mayoclinic.org/symptoms/p...s/sym-20050724

and more here:
https://en.wikipedia.org/wiki/Petechia

Since you were in Thailand twice, this new disease spread by mosquitos, does leave lingering joint pain and other issues:
https://en.wikipedia.org/wiki/Chikungunya

HI,

In your very first post in the beginning of the thread, you outlined things for easy reading. You did not mention any medications.

Are you taking any medications now or recently?

Maybe I just missed it.

Any supplements, over the counter meds, herbs, etc. ?

Quote:

Originally Posted by Tb12 (Post 1169597)

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..

You might find this Australian site helpful; https://www.healthshare.com.au/ .

Anybody can ask questions there and its Health Professional members try to answer them. You can also search it for Melbourne-based doctors who might be able to help you.

Quote:

Originally Posted by Tb12 (Post 1169266)

Thank you so much to everyone above that has reached out and given support and advice..

Just to touch on a few questions and statements people made.

As far as being exposed to chemicals I am not sure at all, I have travelled to thailand 2 times and both times ended up with what I thought was food poisoning and was throwing up for days..

I also got sick whilst in America and had dizzy spells and stomach issues after being bitten by what I feel was bed bugs.. But don't know if anything I have experienced overseas has attributed my symptoms.

Question for kiwi about kennedys disease, I just rang my mum and she said no one male she knows has ever been diagnosed with any neurological disorder not her brother or her mums brother... Does that mean it's a definite no? ..I also have a normal CPK blood test which I hear is usually high in Kennedys disease. My concern is my and proximal weakness and gynecomastia which are both kennedys symptoms.

My neurologist has dismissed me after seeing me for year and saying he can't diagnose it and things it's not neurological..

Rheumatologist also couldn't find anything..

Endocrinologist the same..

So do I go get even more opinions again? Anyone on here from Melbourne Australia? That knows good gp's and specialists?

Hi TB12,
There is quite a bit of controversy about Lyme Disease here in the US as well and there are many tick born illnesses besides Lyme.

The fact that you were in the states and got bit by something would suggest that at minimum your docs need to test for tick born illnesses.

I am sorry for what you are going through. I got Lyme Disease in my late 30's but it wasn't dx'ed until yrs later.

Here is some info from top docs in the US, pertaining to Lyme Disease, etc.

Dr Richard Horowitz
http://www.cangetbetter.com/

Dr Joseph Burrascano

http://danielcameronmd.com/lyme-conv...on-burrascano/

http://www.google.com/url?sa=t&rct=j...xfusFn8eTgx95g

My feeling about tick borne illnesses, especially Lyme Disease is, a month of doxycline is SO inexpensive and after a couple weeks on it, you will know if it is alleviating your symptoms or not. The fact that docs get their dander up about treating tick born diseases is just beyond ludicrous.

Also, there are, at least 300 strains of Bb, the bacteria that cause Lyme and that is why the symptoms are SO diverse, it depends on what strain you get.

Dr Horowitz's book is a wealth of knowledge...he is a brilliant guy who has fought the medical establishment here in the states because he knows the widespread damage that tick born illnesses can bring.

I am not saying you have a tick born illness but it certainly is something to investigate. I went yrs, to plenty of docs before anyone figured out what I had.
Thank God I had a solid work history and none of my bosses thought I was nuts or just making it up, they all saw me slowly descend into severe illness and were supportive of me. This was many yrs ago however, they know much more now.
You can order Dr Horowitz's book on Amazon and even get a used one to save costs.

I wish you well...I know how frustrating it can be to seek out treatment for a seemingly inexplicable set of systems. Honestly, I thought...well maybe I am just having a nervous breakdown and all these crazy symptoms are in my head yet deep down I guess I knew that sudden onset migraines, unbearable light and sound sensitivity, diverse joint pains, insomnia, neuropathy, etc could not all be in my head.

My best TB12.....ask me anything you want....am happy to help.
Diandra

Hey guys,
Thank you so much for your ongoing help and support:)

To answer the question about medication, I am currently not on any..

Quick story before all my symptoms started I went to a dr complaining of general fatigue, a little nerve pain and joint pain and he said possible fibromyalgia and put my on lyrica... I took them for about 3 weeks and didn't like the feeling so I stopped cold turkey and it was about 2 weeks after stopping them that all these symptoms hit me it once..

Could getting of lyrica have anything to do at all with symptoms?

Other than that drs have prescribed me baclofen and something else they put me on for the intracranial hypertension but I can't remember...

I'm currently on zero medication at all.. Besides over the counter pain killers

Low platelets will cause bleeding like this and petechia too. Have you been tested?

Quote:

Originally Posted by Tb12 (Post 1169601)

I think you should get to a rheumatologist and get evaluated for the various autoimmune diseases.

You are having way too many confusing issues, for a regular general practitioner.

Males can have a condition called Reiter's syndrome.
https://umm.edu/health/medical/altme...eiter-syndrome

It is possible you have Klinefelter's syndrome and this is making you prone to other autoimmune disorders... which have their own array of symptoms. So when you look at the whole list of your discomforts, they are all mixed up there and difficult to separate.

For example, a food borne illness of "stomach flu" type symptoms can come from poorly cooked contaminated chicken by a bacteria called Campylobacter. This infection causes all sorts of neurological symptoms (neuropathy) in addition to the vomiting and diarrhea, and this neuropathy can last a long time after the stomach settles.

Keeping a daily journal of what you do, what you eat and how you feel, may be very helpful for you to see what is going on, waxing or waning, and then may help your doctor(s) sort out what is important and what tests to order.

I agree so very much with the suggestion of documenting your daily experience/symptoms.

I did this for a few years and I do it again whenever things become confusing and there seems to be a lot of overlap.

I have tracked as many variables as I have wanted to and some of those variables have changed each time I set up a new diary.

This helps me to clarify things. I can then see patterns/correlations and can present those when I meet with a doctor.
My rheumatologist reads copies of my daily diary when things become more complex.

(By the way, such a diary can often also be introduced as evidence in disability claims/claim renewals, etc.)

Warmly,
DejaVu

Hey guys quick update..

Waiting on results for klinefelters, should know in the next few days, I have also sent fourth referrals to genetic dr for kennedys test just to rule out hopefully( fingers crossed)

Also referrals to a neuro again and another rheumatologist and endocrinologist so hopefully can get some progression on what's going on.

Just a quick question could lyrica withdrawal cause such crazy symptoms to come on all at once within a few days?