Feeling Very Desperate

[Mario martz]

Hey guys,

I don't have anyone to talk about to be honest.
My family is kinda in denial, or just don't wanna hear about my health issues.

first of all as you all might know, i've had tinnitus for at least 10 months already.
obviously something very unfortunate but i've been able to manage, and at this moment its not a problem to me of course, very low right now, and kinda easy to mask.

nowadays im very concerned that my health has been very much affected by something bigger.
i think i might have MS, or something i can not find out what it is.

besides my tinnitus,
after a month of my onset, i started to experience floaters, and it didnt bother me.

also visual snow started to appear, which was only mild and not bothering.

but for some reason these past days it has been acting pretty weird.

first, i have woken up in the middle of the night and when i open my eyes theres the snow vision, and also weird, patterns, lines, lights etc... and even if i close my eyes im able to see it.

and a few nights i have experience like "flashes" when closing my eyes.
also i have some sensitivity to lights, and im a graphic designer....

today i opened my eyes and i could see like electric thunders, or my cells i dont know what it is.

so lets see i have the tinnitus, the visual snow.

and i have had mild body pain all over my body since the cold weather started

a little bit of tingling (but mostly when i change body position)

my jaw jointed hurt for 4 days and it was almost impossible to chew, the pain usually comes and goes, and it's moderate to mild, the only one who was kinda severe was the jaw join, even my ear was hurt.

it only hurt when i bit something, or while sticking my tongue out.
after 4 days it went away... back pain, etc.

i went to a neurotologist a few weeks ago,
he told me MS was unlikely but that it seemed that there was something going on.
next week im getting my first MRI, and some blood test.

he even suggested that fibro was more of a possibility, but my pain is almost mild (only jaw pain was awful when chewing).. and comes and goes, and i have heard that fibro pain is horrible.
also i have read that ms, doesnt strike the whole body... lyme is not an option, because its not common where i live and i havent had fever.
its just, tinnitus and then after 9 months, random body pain, and then after 10 months weird episodes of visual snow.

first doctor i saw told me that it was likely i had menieres/endolymphatic hydrops.

so im very confused, and desperate.

i also have sleep apnea since late 2014 , candida since 2009, and my mother had transverse mylietis back in the late 70s, left her in a wheelchair, she never had recurrent MS or any other complication, just one episode that left her in a wheel chair, she had me after that of course, in the late 80s.

no one in my family has similar symptoms.

back to 2014 i was a super healthy kid (just the candida)

any comment is very welcome

 

[MikeGreen]

Im very very sorry.. currently my family doesnt realize what a chronic issue is and they think its just.. an ear issue. I feel very bad. Im glad Im not the only one.

 

[MikeL1972]

Hi Mario,

Sorry to hear you are going through all this.

Just continue to take the clinical route; go see all the various specialists and screenings. Hopefully they will be able to help you! Best of luck.

 

[jumping jack]

@Mario martz, until you get a definitive diagnosis your mind can be your worst enemy -- catastrophizing over the latest disease you read about on the net, and jacking up your anxiety to unbearable levels. I doubt anyone, whether here on the forums or your docs, will be able to give you a clear answer until you have more tests done, and in the meantime the best advice would be with regards to coping strategies when you are faced with the unknown. I do not know for certain what will put your mind at ease, but the usual suspects include meditation, reading up and practicing CBT (especially, the bit about re-programming catastrophizing thoughts), and engaging in relaxing pastimes.

On the topic of the diagnosis, have you had the quick and dirty blood work done -- complete blood count, blood sugar, CRP, testosterone (and probably other tests I can't recall that may apply to the symptoms you experience)?

 

[Candy]

A few years ago when I was stressed had an episode of tingling, body hurt, almost like when u have a temperature...it eased off after three weeks. They told me it was a virus.

The other symptoms are all common common, tmj, visual snow.

Just get checked out due to your family history but take it easy, don't think about the worst case scenario...x

 

[Jkph75]

Really it could all be a migraine. Look into it. Do you have any neck problems? I have a pain that comes and goes right by my ear and under my ear. I went to a TMJ expert who said that I don't have TMJ. Finally, I figured out that it is my neck being out of whack that's causing the pain.

 

[Mario martz]

Really it could all be a migraine. Look into it. Do you have any neck problems? I have a pain that comes and goes right by my ear and under my ear. I went to a TMJ expert who said that I don't have TMJ. Finally, I figured out that it is my neck being out of whack that's causing the pain.

but the thing is that i dont have headaches...

best scenario i have tinnitus with the usual visual snow.
and body pain is just poor circulation, wich ive been told before.

but the visual snow is more likely to come from optic neuritis (and that means that MS is a possible cause)

 

[Jkph75]

but the thing is that i dont have headaches...

best scenario i have tinnitus with the usual visual snow.
and body pain is just poor circulation, wich ive been told before.

but the visual snow is more likely to come from optic neuritis (and that means that MS is a possible cause)

You don't actually have to have a headache for it to be a migraine.

Do you have the snow all the time or just sometimes? If it's all the time then it's not a migraine but if it's just sometimes then it could be

 

[CDNThailand]

Let me try to make you feel better.

I've had all your symptoms except for sticking out the tounge one!

That was 8 years ago it started, floaters, seeing stars, tingling ect..name it, I've had it.

Some came, some went, some will come again....didn't kill me☺

Its health anxiety, unfortunately I still have it...and t is just great for that!

See a doctor to check, but from my experience it is, was, nothing.

 

[UKJon]

Hi Mario. I'm sorry that you're going through this fear patch. Do not discount stress. Stress can cause so many things from stomach problems to skin problems. Stress is the biggest enemy of modern society.

Also, look up 'Ocular Migraines'. I've had these in the past. There is no headache but there are patterns in one eye that last for some seconds and leave me blind in that eye for a very short time. I have not had one in many years and they always pass but they are not nice.

But I would suggest that stress is your biggest problem. You have noticed some mild symptoms and have built it up into a monster and scared yourself which has added more stress. I've been doing this all my life.

 

[Tweaker]

Mario, try not to get too anxious. Many of us have other symptoms or have had other symptoms. When my tinnitus started, I also developed atypical facial pain (nerve pain) and TMJ. Within 6 months I also had a vetigo attack. All this made me very anxious. I didn't know hwat was going on inside my head. Like my nerves were seriously messed up. Amitriptyline helped my AFP and the vertigo didn't really come back. I get some dizziness at times but not too bad. I was told I had Menieres by one doctor and labryrithitus by the ENT. These days, I have less symptoms, so things didn't get worse for me apart from the worsening tinnitus. I also wondered about MS at the time. Sometimes we don't really know what causes these things but it doesn't necessarily mean there is anything serious going on, or that things won't improve for you..

 

[Coyotesheaven]

Have they looked for autoimmune diseases (Sjorgen's, Lupus, vascular autoimmune issues, etc.), or some kind of bacterial or viral infection? Back in September I was put on high suspicion for Lyme disease, which ended up being false. But it is an outlet you should check out just in case.

Also, again, your sleep apnea can be causing harm to your vascular system. Do you use a CPAP machine at night to manage your symptoms?

I am sorry you are going through all of this. It's making me very upset because that was what started happening to me a year ago. I hope it does not progress to the severity of my problems. Please note me if you need any help or are struggling.

Also, for the sake of not making your anxiety worse, you should not assume the worst possible disease like MS without substantial evidence and diagnoses by a doctor. That disease generally presents with far worse symptoms than you have. For the record, they also assigned me that diagnosis in the early days and it ended up being very untrue. Do read, google, and research, but do not assume the worst from your condition.

 

[Kitty99]

Hi Mario, r u still der?? I'm experiencing the exact same kind of symptoms as u r having . Can u tell what MRI scan revealed for u??