Who Wants to Guess What's Wrong with Me?

M

Mario martz

Member
Author
Feb 12, 2016
1,183
Tinnitus Since
02/2016
#1
So, this past few months have been a total roller coaster for me.
I don't even know where to begin... so I'm just gonna make a "short" list of my symptoms

Everything started on February 2016:

I woke up one morning with tinnitus in left ear...
Went to an specialist who told me it was ETD, I took antihistamines which obviously didn't do anything for me.
So at the end he told me "it's probably related to your exposure to loud music" .... it kinda made sense, so I didn't go for an audiogram cause I didn't want to spend more money trying to cure the uncurable.
I also developed floaters...

By March, April, June...
I started to adjust to my noisy ear, I started to notice some food like raw sugar, raw salt, and MSG would spike it, so I avoided them, as I was taking psychological therapy I started to get better, to manage and focus on the good things in life, I started to habituate etc..
I also started to notice... mild pain in my knees when waking up

By July I went to an "tinnitus specialist"
mostly because i wanted to know if it could be dangerous for me to travel by plane, I told him that my tinnitus came from years of loud music, but the doctors wanted to perform an audiogram at his office, he did it and even tested the super highhhh frequencies, he even told me that most etn wont test those (20k) etc...
and he told me well mario... your tinnitus doesn't come from years of loud music, you have a mild loss in the lower frequencies so after that I became depressed, because he throw out words like endolymphatic hydrops... meniere's etc, even that i didnt have the vertigo (but just the thought of it made me so fucking scared)
after that he ordered more studies which I didn't do because of the money...

October,
tinnitus was still under control, and I was feeling good, just the random pain in the morning that came and go, on of the most severe episode, was one day that I woke up with the left side of my jaw in pain, this lasted for 3 days and I would avoid eating or brushing my teeth cause it was painful to open up wideeeee, but besides that i was feeling fine... then one night i woke up in the middle of the night and when i opened my eyes i could see patterns like lots of tiny cells floating in all my vision. that shit was fucking scary.
obviously I went to a neurologist, he didn't take me so seriously, but ordered me to get an MRI and some blood tests.

November,
i started to notice more... my visual snow, this is like static on the vision, flashes at night, and casually i will see like tiny white dots "with fire" floating on my vision, after this i started to panic, i went to a neuro-ophthalmologist she told me my vision was 100% perfect, that didn't know the nature of my symptoms, in that time i was scared it could be MS, but she told me... she saw my eyes and there wasn't any evidence of optic neuritis, and my symptoms were not optic neuritis or nystagmus etc... so she basically told YOU ARE FINE, don't need to get an MRI, its probably just ocular migraines.

December,
my morning pain got awful!!! right when I woke up some joints were hurting, sometimes I couldn't even know what hurt the most cause my whole body was in pain, the weird thing is that after 15 minutes all pain was gone, and some pain returned during the day, some days my morning pain was gone but my both hands were numb, it was basically a roller coaster, also my vision every morning is blurry and after 15 minutes it gets back to normal, i also couldn't stand bright lights, driving at night was a torture, I also got after images, that means that i can see an object for a while moving on my vision...

Jan, February, March...
I started to have good days, bad days... the problem is that I don't have enough money to take the blood test and the MRI, I still depend on my father, and he just won't believe in me, I've never been a liar, but he just wont believe cause he doesn't "see it" in these months I started to have this body pain almost every morning, but I used to go for a run at the park etc...

Other weird symptoms.
-both legs twitching
-both arms twitching
-burning sensation on my left leg
-pain in my joints, ribs etc...
-now tinnitus on my right ear (yeah it went bilateral)
-general discomfort
-little libido
-erections are not spectacular either
there is also this weird that happen on my eyes not sure if its some form of nystagmus but in the middle of the night when I wake up seems like my eyeball is another position so when I open it it moves.. I don't know how to explain it....
and also other "little things", in the mean time i got my ANA test done:
it came back normal so... the possibility of an autoimmnune disease is 85% not likely.

These past weeks i started to cut sugar/carbs from my diet and it made a HUGEEEE impact, 75% better...

And I've been able to work, have a weekend job, have fun with friends, family, go out, etc...

but there is also this part of me who doesn't feel 100% normal.
some days I have this weird sensation that I'm not myself anymore, i feel very out of place,
i forget names, i have a poor short memory, sometimes i forget what i was going to say. i write stuff in the incorrect order...
but not everything is 100% wrong I have my days where I feel great and that's whats soo fucking odd??

finally this week my dad is believing me and has enough money to get an MRI, so wish me luck..
I honestly don't know what's going on..

It's not MS, that what all doctors tell me since this is not usually how MS strikes.
I think it could be Lyme but its not likely in my city (but I have travelled to places where they have the damn tick)

all doctors tell me it seems like fibro... but I'm not 100% sure, my guts tells me its something more
i just don't think it could be fibro and some form of Meniere's that would so fucking unfortunate, my doctors believe I have a tumor near to my pituitary gland, because also my hormonal test came weird.. is just that everything is happening so quick... 2 years ago I was really healthy.

I need to mention I suffer from candida albicans since 2009 and "sleep apnea" since 3 years ago..

But that's it guys, I don't think anyone would read the whole things but I need to rant a little.
thanks
 
#2
No one? or too long to read?
ill make it short...
these are my current symptoms....

-Tinnitus that started in left ear and now is bi lateral (mild hearing lose in the lower frequencies... thats what the doctor said)
-Visual Snow (after images, poor night vision, light sensitivity, etc)
-Morning body pain in the joints
-burning sensations (leg)
-Buzzing in right leg
-paresthesia in both hands (just in the morning)
-rib pain (that comes and goes during the day)
-no libido haha
-sexual issues
-lighthead
-brainfog
-forgetting stuff, forgetting names, poor short term memory
-twitching around the body
-sleeping distubence
-tiredness
etc...

and thats pretty much it.
got an ANA, no evidence of auto immune (lupus, AS, RA, AIED)
MS usually doesnt strike like this...
so my doctor suspects a tumor... (and for other reasons)
and i suspect lyme...
worst case scenario: a rare form of MS or... Fibro, or fibro and hydrop (early meniere)
idk...
 
#3
I don't think anyone's answered because its too hard to answer. You haven't had any dental implants or anything like that have you?
 
#6
Flamingo said:
I mean, if it were ALS or MS or something like that it would show up on a test...
Click to expand...
Sometimes though, these types of conditions can take a bit of searching to get a convincing diagnostic picture. There is the issue of stage of disease vs sensitivity of tests.

Not meaning to scare you though Mario, just sayin....
 
#7
Hi Mario,

Judging from your post you seem to be in a lot of stress (which is of course no surprise seeing what you're going through). I've had similar symptoms and many more and was never diagnosed. Well, they did diagnose me with health anxiety. An overdose of stress and/or anxiety can give rise to many weird symptoms. The symptoms you describe could be due of an overly stressed nervous system. Take a look at all the symptoms one could suffer from when being overly stressed:

http://www.anxietycentre.com/anxiety-symptoms.shtml#symptomslist

I think I understand why cutting from sugars helped you. If I am correct (read a book about it a year ago or so...): the body uses adrenaline to process sugar, thus cutting from sugar could restore your adrenal glands and make you feel better. But again, this may only work if you have been in an overly stressed state for a long time.

If what I am saying is true, you might want to consider relaxing yourself on a daily basis. Relaxation exercises, mindfulness, yoga, meditation, those sort of exercises will help to make you feel better. Only ten minutes a day will already give you health benefits.

I hope you feel better soon!

Kind regards,
Rudy
 
#8
It's lyme no doubt, I've the same symptoms (well, fewer symptoms in fact) and I am positive on Lyme. Have you done the LTT test at Igenix? REgular tests have 40% false negative (although I was positive) so you should not stop with the typical ELISA/Western BLOT test.

And don't believe the average doctor about Lyme, they know nothing about it.
 
#9
PaulBe said:
Sometimes though, these types of conditions can take a bit of searching to get a convincing diagnostic picture. There is the issue of stage of disease vs sensitivity of tests.

Not meaning to scare you though Mario, just sayin....
Click to expand...

The chances of having ALS or MS are extremely small!
 
#11
Could all be stress related symptoms, but tinnitus + floaters + joint pain + twitching is at least suspicious for Lyme if you live in a place where you might have had exposure.

There are several different blood tests, none of them are close to 100% accurate, though. Because the treatment is generally hardcore antibiotics that don't necessarily play nice with tinnitus, I wouldn't treat for it unless you become very sure you have it...
 
#12
The candida is interesting. Fungal infections can be very long lasting. It is interesting that cutting down on sugar helped things. Might be worth trying an anti-candida diet for a few months to see if that improves things.
 
#14
linearb said:
Could all be stress related symptoms, but tinnitus + floaters + joint pain + twitching is at least suspicious for Lyme if you live in a place where you might have had exposure.

There are several different blood tests, none of them are close to 100% accurate, though. Because the treatment is generally hardcore antibiotics that don't necessarily play nice with tinnitus, I wouldn't treat for it unless you become very sure you have it...
Click to expand...
Many people have success with herbal treatments though, which is fine for tinnitus. But I agree that he should first be sure.

And this is not stress related imo, way too much symptoms in all body parts.
 
#15
Have you had B12 levels tested and vitamin D.

I was having lots of neuro issues and my b12 was 135 (I think). It is often not checked and is a great imitator of ms. My D was 6 which was severely low and also affects things.

I however also have CFS and migraines and had positive ANA years ago which all cause weird issues (nerve, vision,ect).

Lynn
 
#17
RudyL90 said:
Believe me, I've had many more symptoms in all my body parts. This can be stress related.
Click to expand...
I've read countless stories of people with Lyme first being misdiagnosed with stress, anxiety, fibromyalgia, CFS and sometimes even MS, ALS etc. They accept the diagnosis and only years, if not decades (and many symptoms) later they discover it's lyme ;)

And okay, maybe stress can cause these symptoms, I am sure stress can cause bad symptoms. But first he should explore all other possibilities before accepting such a diagnosis.
 
#18
Rubenslash said:
I've read countless stories of people with Lyme first being misdiagnosed with stress, anxiety, fibromyalgia, CFS and sometimes even MS, ALS etc. They accept the diagnosis and only years, if not decades (and many symptoms) later they discover it's lyme ;)

And okay, maybe stress can cause these symptoms, I am sure stress can cause bad symptoms. But first he should explore all other possibilities before accepting such a diagnosis.
Click to expand...

I totally agree.
 
#19
Rubenslash said:
I've read countless stories of people with Lyme first being misdiagnosed with stress, anxiety, fibromyalgia, CFS and sometimes even MS, ALS etc. They accept the diagnosis and only years, if not decades (and many symptoms) later they discover it's lyme ;)

And okay, maybe stress can cause these symptoms, I am sure stress can cause bad symptoms. But first he should explore all other possibilities before accepting such a diagnosis.
Click to expand...

@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
 
#20
@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?
 
#22
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.
 
#24
PaulBe said:
Sometimes though, these types of conditions can take a bit of searching to get a convincing diagnostic picture. There is the issue of stage of disease vs sensitivity of tests.

Not meaning to scare you though Mario, just sayin....
Click to expand...

Dont worry PaulBe,
i have talked to at least 2 neurologist, and a tons of regular doctors.
AND also i have done an extensive research on both illness.
and its not whats going on with me.
ALS is scary, and sadly is something that evolves very quickly
and one of their rules.. is that it doesnt affect the eyes or ears.
and one of their main symptoms is tripping and clumsiness and i dont have those.
Ms is more "likely" but.. my symptoms are in both sides of the body.
and MS doesnt strike like that for the way the body is wired...
so no, but well see
 
#25
RudyL90 said:
Hi Mario,

Judging from your post you seem to be in a lot of stress (which is of course no surprise seeing what you're going through). I've had similar symptoms and many more and was never diagnosed. Well, they did diagnose me with health anxiety. An overdose of stress and/or anxiety can give rise to many weird symptoms. The symptoms you describe could be due of an overly stressed nervous system. Take a look at all the symptoms one could suffer from when being overly stressed:

http://www.anxietycentre.com/anxiety-symptoms.shtml#symptomslist

I think I understand why cutting from sugars helped you. If I am correct (read a book about it a year ago or so...): the body uses adrenaline to process sugar, thus cutting from sugar could restore your adrenal glands and make you feel better. But again, this may only work if you have been in an overly stressed state for a long time.

If what I am saying is true, you might want to consider relaxing yourself on a daily basis. Relaxation exercises, mindfulness, yoga, meditation, those sort of exercises will help to make you feel better. Only ten minutes a day will already give you health benefits.

I hope you feel better soon!

Kind regards,
Rudy
Click to expand...

Thank you so much Rudy,
well my guts tell me that its something more, im under a lot of stress because of this and work, but i have my days where people doesnt believe i have this kind of problems, like for example yesterday... i went out with friends, its all laughs and stuff, i have my moments where i just relax and watch a movie, listen to music or jog in the park.
but tinnitus/visual snow and some others, are always present... thats whats weird.
but im gonna keep this in mind if my tests come clean.
thanks you pal
 
#26
Rubenslash said:
It's lyme no doubt, I've the same symptoms (well, fewer symptoms in fact) and I am positive on Lyme. Have you done the LTT test at Igenix? REgular tests have 40% false negative (although I was positive) so you should not stop with the typical ELISA/Western BLOT test.

And don't believe the average doctor about Lyme, they know nothing about it.
Click to expand...

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 :)
 
#28
linearb said:
Could all be stress related symptoms, but tinnitus + floaters + joint pain + twitching is at least suspicious for Lyme if you live in a place where you might have had exposure.

There are several different blood tests, none of them are close to 100% accurate, though. Because the treatment is generally hardcore antibiotics that don't necessarily play nice with tinnitus, I wouldn't treat for it unless you become very sure you have it...
Click to expand...

Hey Linearb,
thanks for your message... well i think it could be lymes,
and now that you mention it... i have read of people with lymes reversing their ear damage after taking their treatment... soo its weird, because some of them also causes.. tinnitus... mm just weird.
 
#29
volsung37 said:
The candida is interesting. Fungal infections can be very long lasting. It is interesting that cutting down on sugar helped things. Might be worth trying an anti-candida diet for a few months to see if that improves things.
Click to expand...

Yes, im having an improvement to be honest,
and when i eat carbs or sugar... symptoms go bad the next day.
i guess its related to Neurotransmitters, whenever i eat sugar or MSG
i feel worse, they are like gasoline to this shit....
 
#30
light rain said:
Have you had B12 levels tested and vitamin D.

I was having lots of neuro issues and my b12 was 135 (I think). It is often not checked and is a great imitator of ms. My D was 6 which was severely low and also affects things.

I however also have CFS and migraines and had positive ANA years ago which all cause weird issues (nerve, vision,ect).

Lynn
Click to expand...

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 :)
 

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