Who Wants to Guess What's Wrong with Me?

[Mario martz]

@Mario martz as you know i have pretty much about 85% matching with yours. Except my joints feel old ? My entire sceleton is cracking and making noises as i walk (specially legs). All statted right after i developed Tinnitus, Eye Floaters, then Joints. Other neuro things like mild tremors in leg and hands, muscle twitching and other things (problems with stomach).

I was very healthy before this started (good food, sports, very active) I have never felt like this, even remotely...

At this moment i am leaning towards possibility that Visual Snow and/or other neuro/joints issues could not be triggered by Acoustic trauma. I was researching online and could not find even a single case where person went to shooting range/club - got Acoustic trauma and developed all that Mario and i do have, not even Visual Snow.

There is certainly something else involved with this and tgat something screws with entire body.

P.S.

My eye floaters look like this: https://goo.gl/images/dkB1d3 and https://goo.gl/images/37vESF which i find to be very different from typical eye floaters

Thats how my floaters look!
im gonna make some pictures of how my visual snow and floters looks so you can see if they look like yours
maybe its time to get and MRI, we deff have the same stuff going on.
test for lymes to bro,
my skeleton doesn crack, but i think its part of the same
this borrelia list basically has every symptom im having lol let me know how much of it do you have!

http://www.anapsid.org/lyme/symptoms/tbi-symptoms.html

 

[Rubenslash]

Thank you Ruben, i think i fit
very very well in this criteria, i think its is lyme too.
i have been to places where lyme is common, BUT very briefly
and where i live is not that common....
so yes, after MRI, im taking this test. and if it comes negative ill order the igenix kit.

have you been feeling lately?
are your symptoms better?
do you have pain in the morning?
is your tinnitus biletaral?

im very postive that if i have lymes i might get better soon...
I have read of people getting so much better even that got rid of their tinnitus or reversed their hearing loss.
so lets keep our fingers crossed

http://lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf

Checklist of a lyme top doctor, id recommend to complete it and show the results to who ever doubts that u might have lyme.

I will answer on your questions in pm later today

 

[Mario martz]

@lolkas My floaters look the same, that is because in our case, there is a problem in the filtering in the brain, not with our eyes itself.

Most people with severe floaters see them because they are dark and large. We see pretty much everything that flies around in our eyes (even the minor floaters) which people usually filter out. We actually don't have more floaters than average, we have a filtering problem. (that's also the reason why we have blue field entopic phenomenon, usually people filter this out). When treated for Lyme, the floaters disappear which proves again that it's merely a lack of filtering because the actual floaters will not disappear.

Do you already have your results of Lyme testing?

this is fucking interesting!! im gonna make some visuals about how my visual snow/floters look to see if you guys see the same stuff, thanks for the info ruben

http://thosewithvisualsnow.yuku.com...e-Chronic-Lyme-Disease-Visual-Snow-Palinopsia

@lolkas @Mario martz

that case keeps me with hope,
i tried to contact the user but never replied, i found him on fb but didnt seem very friendly.
im happy he got better and i relate to his case 100%

 

[Mario martz]

Hello, I am 14 years old and I was diagnosed with intracranial hypertension. Not all of your symptoms point to you having this, but I would make sure your doctors really take a good look at your MRI to make sure cerebral spinal fluid isn't building up. 2 years ago, I was not seeing right. I saw spots everywhere and my vision was so blurry. I had neck pain and knee pain. I went to my doctors at least 10 times. They all told me that I was crazy and looking for attention. Finally, I went to a different facility and they took a scan of my optic nerve. It was COMPLETELY swollen. They thought it might be a brain tumor or a malformation, but after having an MRI, I had excess cerebral spinal fluid in my brain pushing against my optic nerve. My brain was basically beginning to swell. My mom then went to my normal hospital and yelled at them for not seeing this. They then made an emergency appointment and finally saw it also. My mom became very sad as she didn't believe me when I told her I've been having headaches and was so sensitive to light. I also had very slight tinnitus but learned to ignore it. Although, I don't believe that was related to my condition and usually you will hear beeping and I just heard ringing. Since then, I have had a lumbar puncture, 30 blood tests and have taken very some medication which I now know was ototoxic (diamox). I am now off the medication and am in remission. Intracranial hypertension is 1 in 100,000. It is usually present in overweight woman. But I am a 100 pound 14 year old. Anything is possible. So, I am basically saying that an MRI is the right choice and to always get multiple opinions even if they say you are crazy. If you are wondering why I am on this chat, I now developed bilateral tinnitus from a concert and Eustachian tube dysfunction from a cold. Good luck to you and my prayers are with you.

Thank you michelle you are very sweet, and i admire that you are very young and had to struggle with those symptoms.
for me its been hard because not only i have to deal with this shitty weird symptoms.
im also super anxious and afraid of the unknown, so having this and not know what it is has been a total challenge and of top of that not having the support of the family because "they dont see whats wrong with you" its hard,
im glad you got better!!
thanks for your advice, ill keep you in my prayers too

 

[light rain]

im sorry whats CFS?
thank you well i have a postive ANA, but its so low "its normal"
so i dont know, im gonna check my b12 levels, thanks Lynn

Sorry- CFS in the US is chronic fatigue syndrome; in the UK it used to be ME. Now I think they are trying out a new name but no one can remember it(lol).

Definitely get your B12 checked. Its a cheap easy test and B12 can cause lots of serious permanent damage. First dose of B12 and I felt heat going up and down my spine. I thought I was having a reaction. I got my level up and the tingling in extremities resolved but it actually made my fatigue worse. Some people actually take it for energy but it makes.me tired. So go figure.

Lynn

 

[Mario martz]

@Rubenslash @lolkas

i made some visuals, ill make more when i have more time...

this is how my visual snow look like....

this is how sometimes i see when i wokeup

blurry and with white patterns..

or... i can see my veins...
(this graphic looks shirrty but you get the idea)

also i get this..
*THIS IS NOT DOUBLE VISION* its more like i see and object and then i see it again, an object... not a light, seeing a light after exposure its pretty common, but this is different....

im sorry for the shitty graphics i need to do more stuff...
ill post later other examples of things that happens with my vision..

 

[Rubenslash]

That last one is an afterimage I assume. I've the same as you but definitely not as bad.

 

[lolkas]

@Rubenslash @lolkas

i made some visuals, ill make more when i have more time...

this is how my visual snow look like....
View attachment 12861
View attachment 12862

this is how sometimes i see when i wokeup

blurry and with white patterns..
View attachment 12863

or... i can see my veins...
(this graphic looks shirrty but you get the idea)
View attachment 12864

also i get this..
*THIS IS NOT DOUBLE VISION* its more like i see and object and then i see it again, an object... not a light, seeing a light after exposure its pretty common, but this is different....
View attachment 12865
im sorry for the shitty graphics i need to do more stuff...
ill post later other examples of things that happens with my vision..

Ok VS is 1 to 1 but no veins and double stuff with fan. I can get that fan thing but its like q tiny bit out of main object - lime ghost of some sort.

I had MRI last summer and in late november (last time with contrast) - came out ckean.

With sugar stuff - pretty much same, but more on fatigue side. And i do have sugar cravings big time.

Weathet - does nothing to me (except joints?). Im ok with flaming hot / freezing cold temps.

Checked thyroid and vitamin levels - all good there. Off on hormones and something else - gotta check.

 

[Mario martz]

That last one is an afterimage I assume. I've the same as you but definitely not as bad.

I think my after image picture came a bit weird.. but you get the idea hahah

 

[lolkas]

Sorry wanted to jsutify that during day it is not that bad but is white shimmering like yours but not as bad as your ? at night it is a gazillion RGB dots which are tiny as hell

 

[Gman]

Hi Mario

This is my first post. I have most of the symptoms you describe. I have been on an absolutely horrible rollercoaster ride too!

I was going to list all of my symptoms, but it's a long list, so I'll spare you unless you want to read it. Along with the from ones in your list, my main one has been cold rain drop sensations on my body. The not feeling like you are yourself is spot on. I have never been focussed on my health like this. Always been active and adventurous.

I also have haywire T that's different everyday in tone and volume, despite the first 6months since sudden onset being very mild and stable. Luckily good days it isn't audible unless ears covered, in a quiet room or in bed. Usually it sits at about 9khz, but today it is fizzing at around 12+khz and noticeable above background noises.

In addition, I had Meniere's-ish symptoms develop a couple of days after an MRI. Had to take Betaserc, which helped immensely but still get vertigo and dizzy spells here and there. Totally weird.

No doubt anxiety/stress somehow plays a part, but whether as a result of the symptoms or causes them, who knows. I've had various stresses over the years and never had anything like this crazy stuff. Couldn't even make it up if I tried. Maybe the T is the icing on the cake that pushes it over the edge into this?

The tension myositis syndrome mentioned is interesting. There's also something called psychogenic pain too.
I've considered everything from fibro, lyme, intestinal parasites or overgrowth, diabetes, celiac, crohns, lupus, MS etc. Also considered perhaps some surgery upset my nervous system somehow.

What I have managed to find out so far:
- had a schwannoma removed from abdomen and lipoma from ribs (v traumatic experience under local - could hear the laser cutting and was shivering the entire time from cold)
- neck MRI revealed cervical spondylosis (can cause T - but the Eperisone I am taking is not improving it)
- borderline Chiari Malformation. A neurosurgeon said if my cerebellum was hanging just 2mm lower out of the base of my skull it would be Chiari, but because it isn't then it must just be stress and to "just see how it goes". Never mind the symptoms. Nice.
- full blood test was ok, but there were some elevated liver cancer markers that need to be followed up on soon.
- possible 2 basal cell carcinomas that also need to be followed up on.
- ENTs do not know anything, do not care and are well paid ear wax removers.
- Wikipedia will say you could have pretty much everything, so isn't much help.
- Humans can fly to the moon but know next to nothing about themselves.
- T can and will do whatever it wants even if you eat well, relax, sleep well, keep away from loud noise.

What has helped improve things recently for me (except for the T):
Vitamins - Especially B complex vitamins (mostly B12 with some B1 and B6), magnesium, vitamin c and a bit of zinc, plus a good all round multivitamin. Not all taken each day.

Probiotics - one of the ones with several bacteria strains. Maybe it's SIFO or SIBO causing malabsorption and vitamin deficiency? All I know is I've lost almost 10kg in a matter of months, despite eating well, but seems to be stabilising now (I think).

Chiropractor - they get a bad rap on this site, but I can now sit and lay down without excruciating pain. I now know I don't need hip replacements, just needed some aligning. Occasional nights I have slept the entire night, which hasn't happened for so long. Plus he's the only one who has cared enough to want a diagnosis and referred me to the Neuro.

Eye floaters have diminished a lot this week, or at least for now.

Of course try to find out what's wrong with you. But I have found that unless drs can neatly put you into a category, a lot couldn't be bothered, don't know or are too generalised or too specialised. It's very easy to slip through the cracks. Finding a good one is key.
I'm still going to keep trying to find out. My wife and local dr can think what they want, I don't care.
Don't give up.

G