14 minutes ago, ravenb99 said:

All this mask less fun finally and concerts back and I cannot partake.  Got hit with some undiagnosable virus / auto immune disease April 1st that dropped my cd4 scores to those of someone with aids (sub 200's).   Now forced to double mask if I do want to venture out.   Down to a few options to figure out what it is.  If not just have to live with not knowing and hope immune system comes back up.  Been a wild 6 weeks.  3 trips to ER. 11 days in hospital and 180k in tests to come up with not a single positive diagnosis and be told I'm healthy and fit other than being immunocompromised from what my body has been fighting.  

Get well buddy 😘

27 minutes ago, ravenb99 said:

All this mask less fun finally and concerts back and I cannot partake.  Got hit with some undiagnosable virus / auto immune disease April 1st that dropped my cd4 scores to those of someone with aids (sub 200's).   Now forced to double mask if I do want to venture out.   Down to a few options to figure out what it is.  If not just have to live with not knowing and hope immune system comes back up.  Been a wild 6 weeks.  3 trips to ER. 11 days in hospital and 180k in tests to come up with not a single positive diagnosis and be told I'm healthy and fit other than being immunocompromised from what my body has been fighting.  

Sorry to hear, snap back soon.

All this mask less fun finally and concerts back and I cannot partake.  Got hit with some undiagnosable virus / auto immune disease April 1st that dropped my cd4 scores to those of someone with aids (sub 200's).   Now forced to double mask if I do want to venture out.   Down to a few options to figure out what it is.  If not just have to live with not knowing and hope immune system comes back up.  Been a wild 6 weeks.  3 trips to ER. 11 days in hospital and 180k in tests to come up with not a single positive diagnosis and be told I'm healthy and fit other than being immunocompromised from what my body has been fighting.  

Dude. Get better and I hope they figure it out.

My complaint is that you’re going through this.


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2 hours ago, ravenb99 said:

All this mask less fun finally and concerts back and I cannot partake.  Got hit with some undiagnosable virus / auto immune disease April 1st that dropped my cd4 scores to those of someone with aids (sub 200's).   Now forced to double mask if I do want to venture out.   Down to a few options to figure out what it is.  If not just have to live with not knowing and hope immune system comes back up.  Been a wild 6 weeks.  3 trips to ER. 11 days in hospital and 180k in tests to come up with not a single positive diagnosis and be told I'm healthy and fit other than being immunocompromised from what my body has been fighting.  

sorry to hear. Wish you the best. If it's an auto immune disease those are hard to diagnosis since the symptoms overlap and vary person to person.

Edited May 15, 20214 yr by joch29

Thanks everyone.  Yeah nothing has every fully fit a profile.    They leaned viral meningitis with a type of seizure at onset of episodes.  They only last 24 hours though and then back to normal.  The seizure meds did stop those and the extreme headaches went away 3 weeks ago or so.  The cd4 staying low though didn't mesh with it being over so something else is still fighting.     Had 3 enlarged lymph nodes on lungs that are going to be revisited this week to see if they shrunk to determine if they were reactive of the infection /disease or possible lymphoma.  Although everything has gone against that so far too.   That's about the last thing we can check.   Had every test imaginable and mayo clinic did a panel of auto immune and all were negative.   The episodes themselves were scary.  Last one I lost sight (didn't know it) and ability to speak in normal language.   Apparently I made my own up.   

Thanks everyone.  Yeah nothing has every fully fit a profile.    They leaned viral meningitis with a type of seizure at onset of episodes.  They only last 24 hours though and then back to normal.  The seizure meds did stop those and the extreme headaches went away 3 weeks ago or so.  The cd4 staying low though didn't mesh with it being over so something else is still fighting.     Had 3 enlarged lymph nodes on lungs that are going to be revisited this week to see if they shrunk to determine if they were reactive of the infection /disease or possible lymphoma.  Although everything has gone against that so far too.   That's about the last thing we can check.   Had every test imaginable and mayo clinic did a panel of auto immune and all were negative.   The episodes themselves were scary.  Last one I lost sight (didn't know it) and ability to speak in normal language.   Apparently I made my own up.   

Holy crap, that’s insane.

A friend of mine just got diagnosed with MS after a few weeks of strange episodes and things that didn’t fit any one thing. They thought he had a series of mini strokes at one point. Turns out it was this rare flair up of undiagnosed MS that attacked several parts of his brain at once.


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9 minutes ago, Alpinemaps said:

Holy crap, that’s insane.

A friend of mine just got diagnosed with MS after a few weeks of strange episodes and things that didn’t fit any one thing. They thought he had a series of mini strokes at one point. Turns out it was this rare flair up of undiagnosed MS that attacked several parts of his brain at once.


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Yeah they looked into that as well.   To me that and sarcoidosis seemed to have to most symptoms that matched other than the viral side.  I came in on stroke protocol each time as I couldn't speak coherently but passed all that.  Each ER visit started with stroke protocol, heart attack, seizure and of course covid.  Apparently I swung at the person that administered the covid test first time.  I was completely out of it that trip.  Put me on one of the heavy sedatives and I had opposite reaction and made me angrier and apparently tried to take out most the nursing staff.  Guess they strapped me to bed and I got my legs out and tried walking out with the hospital bed.  Next day was like nothing ever happened.  That time they discharged me with acute delirium.  Said nothing was wrong with me.  Wasn't until 2nd and 3rd time they got deeper in testing and had 6 specialists on the case.  The whole thing has been baffling.  

8 minutes ago, ravenb99 said:

Yeah they looked into that as well.   To me that and sarcoidosis seemed to have to most symptoms that matched other than the viral side.  I came in on stroke protocol each time as I couldn't speak coherently but passed all that.  Each ER visit started with stroke protocol, heart attack, seizure and of course covid.  Apparently I swung at the person that administered the covid test first time.  I was completely out of it that trip.  Put me on one of the heavy sedatives and I had opposite reaction and made me angrier and apparently tried to take out most the nursing staff.  Guess they strapped me to bed and I got my legs out and tried walking out with the hospital bed.  Next day was like nothing ever happened.  That time they discharged me with acute delirium.  Said nothing was wrong with me.  Wasn't until 2nd and 3rd time they got deeper in testing and had 6 specialists on the case.  The whole thing has been baffling.  

omg.. that's terrifying.  Stay strong and hopeful.  I hope they can figure it out. Perhaps a team approach of different drs from same hospital can figure it out.  We had gone to 15-20 specialists from different hospitals and no one could figure out what was wrong accept some sort of inflammation and borderline tests of some type of autoimmune disease. We even tried eastern medicine and herbal stuff nothing led to any real answers.

22 minutes ago, ravenb99 said:

Yeah they looked into that as well.   To me that and sarcoidosis seemed to have to most symptoms that matched other than the viral side.  I came in on stroke protocol each time as I couldn't speak coherently but passed all that.  Each ER visit started with stroke protocol, heart attack, seizure and of course covid.  Apparently I swung at the person that administered the covid test first time.  I was completely out of it that trip.  Put me on one of the heavy sedatives and I had opposite reaction and made me angrier and apparently tried to take out most the nursing staff.  Guess they strapped me to bed and I got my legs out and tried walking out with the hospital bed.  Next day was like nothing ever happened.  That time they discharged me with acute delirium.  Said nothing was wrong with me.  Wasn't until 2nd and 3rd time they got deeper in testing and had 6 specialists on the case.  The whole thing has been baffling.  

I assume they've looked into Lyme Disease?  Whenever I hear stories of long periods of tests without diagnosis, it seems they are often tied to Lyme Disease.  I haven't looked up specific symptoms, but it appears to impact auto-immune systems as well.

24 minutes ago, joch29 said:

omg.. that's terrifying.  Stay strong and hopeful.  I hope they can figure it out. Perhaps a team approach of different drs from same hospital can figure it out.  We had gone to 15-20 specialists from different hospitals and no one could figure out what was wrong accept some sort of inflammation and borderline tests of some type of autoimmune disease. We even tried eastern medicine and herbal stuff nothing led to any real answers.

Yeah mine was from same hospital. I just reached out to a different one yesterday and think will let them finish it out. See if some different people from another hospital makes a difference.  I was very happy with the team at mine but like you said after release more going specialist to specialist and still not getting anywhere.  Sounds like it will end that way.  

 

21 minutes ago, exciter1 said:

I assume they've looked into Lyme Disease?  Whenever I hear stories of long periods of tests without diagnosis, it seems they are often tied to Lyme Disease.  I haven't looked up specific symptoms, but it appears to impact auto-immune systems as well.

Yeah they did. Negative as well

50 minutes ago, ravenb99 said:

Yeah mine was from same hospital. I just reached out to a different one yesterday and think will let them finish it out. See if some different people from another hospital makes a difference.  I was very happy with the team at mine but like you said after release more going specialist to specialist and still not getting anywhere.  Sounds like it will end that way.  

 

Yeah they did. Negative as well

So I am sure they have run a differential diagnosis and ruled out all environmental (warehouse or home) and dietary culprits like mercury. Neurologist should have ordered CT of Brain and sleep deprived EEG. It is not likely autoimmune MS with both CNS and PNS symptoms as those are two different cells. Sounds like a brain tumor (which they would have found) and that those lung nodules are just coincidental. Wife is not poising you? Travel to any tropical destinations?

You know who you need... 

One the most awesome things about this community is how we rally to support and offer words of encouragement to one of our own in their time of need.  Please stay strong ravenb99 and may you get a diagnosis soon.

25 minutes ago, Pseudoty said:

So I am sure they have run a differential diagnosis and ruled out all environmental (warehouse or home) and dietary culprits like mercury. Neurologist should have ordered CT of Brain and sleep deprived EEG. It is not likely autoimmune MS with both CNS and PNS symptoms as those are two different cells. Sounds like a brain tumor (which they would have found) and that those lung nodules are just coincidental. Wife is not poising you? Travel to any tropical destinations?

You know who you need... 

heh I watched that while in the hospital,  not as cool when the episode is one where someone actually died.  Yeah they did all that.  Brain was fine,  has a small cyst on the top but said it was nothing and lots of people have them.  Brain was clear.  Had multiple ct's, multiple mri's,  2 lumbar punctures one free hand by the neurologist and one with the guidance.   Funny enough the free hand was less painful.  2 eeg's of which I closed my eyes and he goes that defeats the purpose.   I told him it was bothering me.  

Naturally I thought the goal was to collect the most possible tests in shortest time frame...

Naturally I thought the goal was to collect the most possible tests in shortest time frame...

At least you're succeeding in that! I hope the doctors are able to figure it out soon, and you get better.

Yay LEGO!

Sorry to hear everything you’ve been through @ravenb99 and like others said, I really hope you get to the bottom of this soon.

Sounds like you’ve had a great team of Drs so far. Might be a silly question, but have you had any tests for vertigo/ear scans yet?

Edited May 16, 20214 yr by BricksBrotha
Typo

Sorry to hear about all this raven. Hope things go well for you.

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11 hours ago, ravenb99 said:

Naturally I thought the goal was to collect the most possible tests in shortest time frame...

I had 17 vials taken at one time...looks like you beat my record

Hope the Drs can figure it out.  And I hope you feel better bro!

5 levels of Catcha just to open a freakin Walmart website

[and then having to scroll thru BPer to find the "Complaint Thread" to complain about it]

 

dangit...I've become one of those whack jobs that comment on FOX news articles

4 minutes ago, $20 on joe vs dan said:

5 levels of Catcha just to open a freakin Walmart website

I've had similar problems with that site.  I've found that, when it asks for a Catcha, that you can just enter via walmart.com (no specialized link) and bypass the whole Catcha routine.  In other words, if I use my link to go to their grocery side or a certain set, if it trips the Catcha, walmart.com lets me in without having to go through that BS.

 

1 hour ago, $20 on joe vs dan said:

5 levels of Catcha just to open a freakin Walmart website

[and then having to scroll thru BPer to find the "Complaint Thread" to complain about it]

 

dangit...I've become one of those whack jobs that comment on FOX news articles

Get the app.  It is actually pretty decent.

I guess I am the guy that replies to a comment left by a whack job on Fox News article.

 

20 minutes ago, Darth_Raichu said:

Get the app.  It is actually pretty decent.

I guess I am the guy that replies to a comment left by a whack job on Fox News article.

 

what app?  

1 minute ago, $20 on joe vs dan said:

what app?  

WalMart app

When the hell is Ninjago City Gardens going to come back in stock, have had an alert on it for over two months at this point I think. It randomly popped up on Kohls website but soldout before I could get an order in a few weeks ago.

9 hours ago, $20 on joe vs dan said:

what app?  

https://www.foxnews.com/download