My symptoms, please help, any advice and anyone similar on this board?
 

Hey guys
First time on here for me, I am a 30 year old male from Melbourne Australia...

My symptoms have been ongoing for almost four years now with no diagnosis what so ever and are not stopping only getting worse.. Symptoms are as follows ..

Besides some general fatigue, the odd muscle twitch here and there this is how it all started..

The symptoms came on over 2 days, the first day i did some gardening and noticed my right hand tremoring and very weak so i stopped, the next day i played basketball and that night all hell broke lose on my body and i woke with twitches all over that lead into these symptoms..

symptoms:
1. high quantity of twitches everywhere in my body, you name it, i have twitched (still current)
2. postural tremors felt and seen as well as tremors if holding weight etc on any limb, body part (still current)
3. Proximal muscle pain and feeling of weakness
3. myclonic sleep jerks and now some electric shock type jerks whilst awake that move my body and a limb (still current)
4. GERD, heartburn, scalloped tongue, slurring of some words my th's sometimes turn to f's, tongue biting on occasion whilst eating (still current)..food getting stuck in throat and needing a extra swallow
5. extreme muscle stiffness throughout whole body, feels difficult to hold my posture most days (still current)
6. extreme muscle pain that is sporadic and all over body periodically like sharp pains or deep pain (still current)
7. tingles and ticklish itchiness that drives my crazy through out my whole body (still current)
8. a few cramps that kill or a feeling of a cramp like deep pain through out body parts (still current)
9. extreme clicking of joints with pain involved(still current)

medical history for these symptoms
1. 8 neuro visits:
2. clinical exams always fine and passed, no clinical weakness seen even tho i feel weak and am tremoring and less stable
3. 5 emgs over 2 years, first emg was suggestive of mild chronic denervation, the other 4 were completely normal and clean
4. Dismissed by rheumatologist, said I was clean
5. All endocrine issues are fine besides a low vitamin d
6. Brain MRI is fine
7. Slightly elevated spinal fluid and pseudopapildemia in my eyes


I have consistently bought up my concerns of kennedys disease but due to my CPK blood work being normal neuros won't test me for it ...not even for piece of mind..

I am usually bed ridden and I'm over it, it's so difficult to even to on or plan a future being this sick and not knowing what's going on with me at all..

I'm guessing Lyme disease is not common in australia? I have had massive break outs of red dots everywhere but dr says it's just campbell de Morgan spots ..

Any help would be greatly appreciated.. I hope we can all support each other.

Hello and welcome to the NeuroTalk Support Groups.

Were you sick with anything before this started? Flu like symptoms? If so has anyone mentioned Post Viral Syndrome?
Lyme... Our Govt authorities have said in the past that Lyme doesn't exist here, and that the only people who could have Lyme disease are people who were overseas in certain areas and got it there, but there are some hard working GPs in some areas that believe otherwise. There is one in Bellingen in Northern NSW. . I used to have a lot saved on computer but most of the links are years old and not working so I'll try to find it and post back. Another on Sunshine Coast in Qld from memory. Found mention of one GP in Melbourne in article below and a number of others...

Added: ABC Radio National - Lyme: A Four Letter Word
That's from 2013 so some changes probably have happened since then.

Another place for info regarding Lyme Disease or Lyme like Illness is the
Karl McManus Foundation
"The KMF is a promoter of evidence-based research and
clinical practice for tick-borne diseases and an advocate
for better testing, treatment and education in Australia."

Check out the section on that site - Murdoch University Tick Research raise new questions

Edited later to add:
http://www.health.gov.au/lyme-disease
Australian Government Department of Health
Lyme Disease

I'm really sorry you're so sick and for so long. I hope you find some answers. That's an awful lot of symptoms you're experiencing. Not good.

Hi Tb12,

I am sorry to say but I am clueless, void of any ideas, of what may be ailing you. After reading your post, I feel compelled to say how well you have outlined your symptoms and medical consults thus far. Made for easy reading.

I hope someone will respond that may provide some possible insight or ideas for you.

Sorry to hear of your suffering. Wishing you the best in your search for answers and relief.

Any Known Chemical Exposure(s)?
 

Hi Tb12,

Welcome to NeuroTalk! :D

Please make yourself at home here on any forum(s)!

I am sorry you have been challenged with a condition(s) yet unidentified by your medical caregivers. Has to be frustrating and maybe also a bit demoralizing at this point? :(

I had read your entry earlier today and have given your symptoms some thought.



You have mentioned "massive break outs of red dots everywhere," your doctor has identified these dots as Campbell de Morgan spots.

These are also known as Cherry Angiomas. While Cherry Angiomas are often not a sign of anything in particular, they sometimes appear in response to exposure to chemicals.

http://www.healthline.com/health/cherry-angioma#Causes3

Had you had new and/or ongoing exposure to chemicals?

I hope you find the explanations(s) for your illness and the assistance/treatment(s) needed in order to feel much better, as soon as possible.

Hope to see you around the forums here.

To our healing,
DejaVu

Hi Tb12

Welcome to the community - I hope that you find it as helpful and knowledgeable as I have :).

I think that Lara is right about Lyme Disease - whether it or other tick-borne diseases are found here is controversial but her links are certainly worth checking out.

You mentioned Kennedy's Disease. It is an X-linked recessive disorder. It might be worth finding out if any men on the mother's side of your family have been diagnosed with it.

If so, it is worth investigating. If not, I would not worry about it.

All the best.

Persistence Tends to Pay Off
 

TB12,

There are also "non-dystrophic" neuromuscular conditions in which CPK is normal and EMGs may remain "normal" for years.

Keep tracking your symptoms and continue to present to your neurologists.
Your persistence is apt to pay off. Are any of your neurologists also specialists in neuromuscular medicine?

I had many symptoms for many years. This was complicated by co-occurring conditions. My neuromuscular diagnosis never became clear, despite years of repeated testing, until I was in a rather severe neuromuscular crisis in the ER and was seen while in crisis -- with overt and serious neuromuscular dysfunction, witnessed by a very bright intern in Neuromuscular medicine.

The many symptoms/signs I had noted over many years, which had been noted in my chart for all of those years, were read by this intern and had helped him to make a case to get me into the neuromuscular clinic for further evaluations.

Please keep good notes, just like the ones you have presented here. Continue to hand copies to your doctors.

If possible, seek second opinions, as well.

I also agree with Lara and Kiwi, also look into the possibility of Lyme Disease.

I hope we can support you in your finding your path to healing.

Warmly,
DejaVu

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

"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."

Writing as a biomedical scientist, not a health professional, I think that what your Mum has told you means that you can rule out Kennedy's Disease.

The fact that your CPK level is in the normal range supports this - elevated levels of CPK can indicate Kennedy's Disease but many other things as well.

So, probably a "definite no". You might find this Victoria-based link helpful; http://www.betterhealth.vic.gov.au/b...'s_disease .

I hope that you get answers soon.

Kiwi,
Thank you so much for your support and knowledge. You have given me more information than my gp and neuros... One GP said how do you spell it and didn't even know what is was and my neuros didn't even go into detail about it..

I didn't know the CPk blood test was actually used as a pretty decent marker for it's potential like that information states coupled with the fact that no one in my mothers family has it is a great sign..

Even tho it mimicks all my symptoms I must remember they can be symptoms of anything neurological and most symptoms I would assume cross over?..

The neuros have ruled out ALS due to my last 3 emg's being clean and after 3.5 years I should have a complete tell tail ALS sign as that is no joke of a diagnosis...

Have you ever heard of Benign Fasiculation syndrome? Or maybe I should look into fibromyalgia and of course Lyme..

My big concerns besides the non stop body wide twitches are the postural and distal tremors when the muscles are put under stress and the joint pain in all my joints is on a scale of 10 constantly and they feel so unstable ..

This board is a great support and help

Hi againTb12,

These are just my personal thoughts after reading all your posts again...

If I was in your position, and putting all your symptoms in a list together, I'd be seeking out the very best Endocrinologist that is available in Victoria.

Not sure how often you have seen one or how long ago you saw an Endocrinologist and what they had to say to you. Personally I'd be seeing one of them rather than a Neuro considering some of your symptoms.

I can't see how some of your symptoms could be caused by Lyme or Lyme like disease, but I'm not a doctor.

Gynecomastia for example. I'm not understanding how they could tell you that
<<All endocrine issues are fine besides a low vitamin d>>

Plus this

<<Slightly elevated spinal fluid and pseudopapildemia in my eyes>>
How have all these doctors explained those symptoms to you?

It's your health and it sounds seriously debilitating and you really need to find out what is going on. This person below may not treat patients himself I'm not sure, but it might be worth contacting them even if it's for other leads. Some are more approachable than others, but I'd go for it myself.

http://www.findanexpert.unimelb.edu....ay/person15807
Professor Jeffrey Zajac

You could also check out
Austin Health
http://www.austin.org.au/departments/
or some of the Links at
http://www.melbournebraincentre.edu.au/

Ask for help.

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..

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.

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..

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.

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.

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.

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

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?

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.

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.

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. ?

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.

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?

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.

Documentation
 

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?

It is difficult to say about the Lyrica. Two weeks is not really very long to be using it.

Hi Tb12

You might find this link and links therein interesting in the context of Lyme Disease in Australia; http://www.huffingtonpost.com.au/201..._ref=australia .

I have a question for you....have you experienced having shortness of breath?
The reason I ask is because I have experienced the jerking of legs, extremities, cramping, GERD, feelings of electrical pulses, and tingling. The only one that isn't a part of what I have is the GERD.

I suffer from chronic iron anemia. My liver doesn't store iron like other people do. My body flushes extra iron out of my system, so I do not have an extra supply if I happen to have something throwing my iron levels to lower. Mine will just continue to lower if I don't get iron infusions and/or blood transfusions. One of the signs of not having iron stores is a feeling of being tired, twitching, tingling and itching of extremities. My iron levels 3 years ago got so low that I had to have 4 blood transfusions and 2 iron infusions over a week while in the hospital. I almost died, so I am an advocate of getting your iron stores checked in addition to your iron levels.

I hope that this will help you to at least have one more thing to check and knock off of your list. It isn't very common. It is unusual to have chronic low iron stores but it is worth checking because you could also have acute iron issues which are quite common.

Shortness of breath and tiredness and lethargic are huge symptoms on top of my symptoms..

My only concern is my routine bloods are fine besides a few markers here and there that change like ferritin, csr, ESR, Atl liver... But last check everything was fine on routine bloods?

Ferritin is the one that you need to keep an eye on. That is the marker for iron stores in your liver. If it is high, or low, it can cause quite a few of your symptoms.

My symptoms, please help, any advice and anyone similar on this board?
 

:confused: I'm shaking my head here, just reading your symptoms and the range of tests and comments by medical professionals that you're reporting - I'm not in Australia, so no help re: any specialists local to you, but KEEP DIGGING! By sharing your story, you're helping all of us. THANK YOU!
And I hope you've made some progress.

Just a couple of questions/thoughts:
If you thought you were bitten by bed bugs, maybe it was something else, and that little biter's carried a micro-virus or something into your system.
If you were in the US, have you considered contacting the CDC in the US?

On the other hand, if experts seem to be ruling out disease, then maybe this is the result of injury? Any head-knocks or awkward tumbles, either at work or play? Football, hiking, biking, climbing, watersports, what-have-you?
My story is workplace injury, full faceplant under a loaded 5'x5.5'x1.5' castered laundry rack. Very lucky I didn't actually break my back, neck or skull, but since then I'm dealing with persistent pain, tremens, spasticity, unreliable muscle response and motor functions, and profound fatigue, such a short rope for energy, use it up so quickly when I'm trying to cover up my inadequacies and make like I'm just fine. Some days I just can't fake it.
Doesn't seem from your writing like you have any confusion or brain-function problems...but maybe you don't focus on what isn't working well in that regard. It took a year for me to get diagnosed as having had concussion, what with the doctors and the workers' comp system all saying that the symptoms I was reporting were just my imagination. I was so ashamed, thought I was going mad. It wasn't until others reported or witnessed for me that I got what help I've had.
So I wonder if you had a head injury, maybe not even a major one but an accumulation of a series of apparently minor ones? Doesn't need to be a major skull-crush to mess up your neuro-muscular responses. The effects can be tricky to get a good 'picture' of, because you seem like me, just wanting to get whatever it is fixed and get your life back, which makes it likely that you'll be the first one scoffing at yourself - add that to the less-is-more/just-get-over-yourself response of a lot of doctors and insurance schemes, and presto, you have the perfect shaming/trivialization chorus, which is worse than no help at all!
You have a right to be as well as possible; keep asking for what you need, never give up!

Thanks for your message it means so much..

As far as concussions I am unsure, I use to do pro wrestling and I took a huge amount of pounding on my head and body...

I had to leave due to back problems..

After that I started getting black eye floaters ..

I never felt the same again, I always felt weak and what not..

I then started having sensory issues like a numb face and what not on occasions and my memory to me is really bad I can barely recall any of that time I wrestled unless I watch tape or what not..

I can meet someone these days and within a few days forget their voice and facial features..

I'm hit sure if that's normal or not...

But then I got hit with all the other ongoing health issues..

The dr finally sent me for a few gene tests for klinefelters syndrome and kennedys disease but these test take 2 months to come back so my anxiety is at a all time high..

Thank so much for your concern it means a lot.

Possibility
 

It sounds like Functional Neurological Disorder (FND). It also has several other names: NEAD, Conversion Disorder, Pyschogenic Non-epileptic Seizures (PNES), Psychogenic Movement Disorder, etc.

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I hope you find the answers that you need. If it is the above, it's a very long road!! I would like to hear a follow-up of how you are doing.

Tb12,

I have a friend that had some horrible symptoms and was often stuck in bed. She was finally diagnosed with Idiopathic intracranial hypertension or pseudotumor cerebri. Her neurologist and ophthalmologist worked closely together to get her symptoms under control.

I wish you the best.

Thanks for the comment bdouglas

Did she have any symptoms I have above? Especially the neurological ones or?