TL;DR fans just skip it - there's a happy ending at the end



About 3 months ago at work I started feeling light headed and slight dizziness. Then I would notice during some technical discussions it was difficult for me to keep up which is unusual for me. I also had an incredible itching on one arm. I went to an after hours clinc and he gave me an antiobiotic in case I had an inner ear infection and told me the itch was dry skin due to the cold weather.



Time went on and it just got worse. Eventually it was getting hard for me to work and more dizziness. Not really dizzy but if you looked at like say the fuel gauge in the truck and then back up it took like 15-20 seconds to get back into focus of what I was doing instead of a quick glance.



Went to the ER on a weekend and went thru the symptons including the incredible itch on one arm that by now I had scratched entirely thru the skin and was causing a funny feeling coming from the area on the wrist and insto my thumb. The did a cat scan and declared me "OK" and see a neurologist.



I went to nuerologist and he could see the catscan from the ER and said it looks like possibly you had a stroke and ordered an MRI, along with some blood work and a sonogram of my arties in my neck...but when I was scheduling the MRI and follow up they came up with all test except blood work being done 7 weeks in the future and an appointment to see the Dr. after that. 7 weeks???





I couldn't get an appointment with another neurologist so I tried an internest thinking he could coordinate all the testing. By this time I was having difficult walking, I had to use a cane, was not working, really having difficult concentrating, couldn't feel hot/cold on one side. Dr. walked in and he was an old guy with a cane, it was a good choice. He instantly said you need to see a neurologist and let's get it done NOW. They ordered a MRI 3-4 days away and scheduled a neurologist for the same afternoon as the MRI.



So 3-4 days later I had an MRI (by now I couldn't drive and my mom drove me) I had a really difficult time walking etc..I did the MRI first thing in the morning. It was ordered as a regular MRI with no contrast. The tech came in and said let's run it again with contrast. I knew I was in trouble at this point. I declined as I had a bad reaction to the dye once before.



I went to the neurologist that afternoon. I sat in the car where it was comfortable waiting to be called. It was tough. I told my mom (who was helping me drive and I had been staying with them now as I could no longer take care of myself) that "this isn't going to be good".



Dr. came in and asked me 3-4 questions and walked out to look at the MRI. He entered back into the room and ignored a question from my mom (middle eastern Dr.). He said "I have not so good news, you have MASSIVE brain damage. He said it's either from lots of strokes or MS. He went on to say "it will never be better than today and that if it's MS he expected me to never walk again.



Not gonna lie that was tough. Never better than today and that was THE WORST day yet. I couldn't walk, I had to get help getting into a wheelchair the Dr. provided, I coudn't feel hot or cold on one side of my body. I couldh't pick up an empty coke can with my left arm. Things were bad. I did not take it well but my mom who is 69 and had breast cancer last year and a recent scare of them telling her she had liver disease but turned out she didn't, she was a rock. She just kept telling me we'll figure something out (I'm 43 and single) and move on.



The Dr. scheduled a spinal tap a week in the future to confirm MS, I had to wait a week to get off of aspirin in case I bled. I went and had the songrams on my arteries. So a week passes of pure hell and I arrive at the hospital with my mom for a 6am spinal tap. So 8:30 rolls around and he never shows up. So we leave and call him from home (We live 1-1/2 hours away) and he won't even return my call.



So time passes and eventually I get to where I can walk but really wobbly. The entire time my boss keeps paying me and telling me to do whatever it takes to get it straigtened out. I really started dropping symptons pretty quick and after 2 weeks I drove myself to work to talk to my boss. He said don't sweat it, come in and work if I can or not. If it's something that will take a few days I can take it home and draw it.



By now I'm starting to accept I have MS an start doing lots of rearch.



I never got my results on my songrams on my neck so I made an appointment with a vascular Dr. I show up and he says I really don't want to trust someone elses test but we can do it right here in the office and it won't take 10 minutes. They do the test and he says the arteries look fine and well below average for my age which is good. I explain the pain in the ass probleams I've had and his nurse makes me an appointment with another nuerologist.



The appointment was yesterday, I will never forget that appointment. The Dr. was young, 35 and educated at Harvard. His nurse is nice and fills out all the stuff. By now I can walk without a cane and only really have numb feelings in  one hand and one foot and some wobblieness tho my mom says it's hard to spot. I fully expected an exam and an order for a spinal tap to confirm MS.



I am sitting in a chair when the neurologist walks in and we go over all the past symptons that came and went and the MS diagnosis and problems with the previous Doctors. He ask me to get on the exam table.  I take 3-4 steps and he says "STOP". Walk down there and back. When I get back he ask me to hop on one foot. I try and succedd but it's really not pretty and then he ask about the other foot. I hope 3-4 times and kind of wander all over. He ask me to touch my nose and then arm wrestle him with my previous weak hand.



He said "I am 90% certain you don't have MS" What?



He says if you have your first episode of MS problems you don't go from can't walk to hopping on one feet in 3-4 weeks. I then tell him about the incredible itching. He looks at my bicep from 10 feet away and says "That's shingles and it's the smallest outbreak I've ever seen, smaller than a dime". He then says I'm 99% certain you don't have MS.



He said let's look at your MRI. He pulls it up and I say I rather not look since I had the "massive brain damage' diagnoses. He says ok stand behind the curtain. He looks for a minute and then says you really should see this. I look and I have 3 lesions on my brain about the size of a small pea. He says these lesions aren't from MS. They're the same age, recent, and if it was MS you would have lots more lesions and varying age even if it was a new diagnoses.



He says you have ADEM. He explains it's a reaction to the shingles virus (or any virus) that gets into the brain and causes these lesions (they short cirtuit like MS so I couldn't walk) and swelling of the brain (causes the blindness in one eye and dizziness).



He then says "I predict a 100% return to normal in a few weeks to a few months if you don't push it



What? I ask about the lesions and he says we'll schedule another MRI in a week or 2 and I expect by then you won't have any new lesions and in time (maybe 2 weeks) they will shrink and totally disappear....what?



So I ask what about medication? He says just let it pass it's just shingles, the worst has happend. It ONLY happens to a handful of adults per year in the US. It's common in kids who get measles, chicken pox and even vaccines. I looked it up and there's a chance some of the symptons I have will stay with me. But really it's only an odd feeling in 2 fingers at this point. I'm lucky the virus was shingles and they could see it instead of a virus that you can't see and it can be fatal.



He listed all the shit that went wrong.



The Dr. at the clinic missed the shingles early when they could give me the shot for shingles and make it go away quickly

The ER missed shingles and dizziness which would have been a red flat for brain swelling

The first neurologist missed everything

The 2nd nurologist missed the shingles virus causing problems AND apparently can't tell a MS MRI fro a minor one.



So yesterday on the way home I bought a lottery ticket and fired up a 1964 Padron Anniversary cigar when I got home.



What a day. I should return to normal or almost normal and mainly am waiting to get over the fatigue feeling



The Dr. I saw yesterday called me at home tonight (wow) and wanted to say he checked with 2 other neurologist to confirm and they agreed. None of them had ever seen it in an adult and none of them knew a nuerologist that had personally seen it. I went back to work today working part time.



I know TL;DR

damn you said don't click and I still clicked it.  fuck

tldr

I have two friends that have it and both are avid cyclist and they say the exercise helps. Good luck to you and keep a positive attitude.

Damn, that's a hell of an experience you had there. Glad everything worked out, and you don't have MS. If I went thru that, I'd probably have ulcers.

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Ha!  Didn't know I could quote myself.

Sweet.  On the down side you will have to go back to sitting on your hand to get the full affect of "the stranger" again.  Glad they were wrong and you are okay.

Positive attitude now is I never had MS and I'm down to a funny feeling 2 fingers and in the next few weeks that will disappear. The Dr. I saw yesterday called me at home tonight and said he called the previous Dr. and they "had a conversation". I asked what he said and he wouldn't comment any futher than "He shouldn't be giving out a diagnoses of MS to anyone".

Wow!! Glad you're doing better OP. Hope you didn't rack up too many bills from all the bad visits.

It shouldn't be too bad. The ER visit was only $1800 and 3-4 office visits and one MRI so far.



 

Had a lot of down times and family with the same. As I think you learned here, don't ever count yourself out before you truly know it.

Take your mom on a cruise.

I'm glad you're OK, OP.  Knowing somebody with MS, I only wish that particular case was as minor as yours.

Wow.  What a trying time for you.  Hopefully the Shingle problems will disappear soon.  Good Luck.

P.S.  You might want to change your thread title for the TL;DR crowd who now believes you have MS.

I've got 20 years in the Medical Field and could have told you in the first exam it was MS.

Shingles is an extremely debilitating disease state in some patients.
stick with that last Doc.

I'm glad your better.
Hopefully it doesn't turn into Guillain Barre syndrome later on down the road.
Do some research on it.

wat?

My mom was diagnosed with MS when I was born 40 years ago. My aunt diagnosed about 10 years age. It sucks when you body lets you down. Medicine has helped my mom tremendously. Good luck.

At least it's not Lupus.

Yayyyyyy. Happy ending OP. Congrats.

Having gone through an MS scare myself, I feel for you.

Wanna know how I know you tl;dr


Eta excellent news OP. Enjoy life and take it easy. You'll be back to 100% before you know it.

Happy ending.  My Pop fought MS for 30 years.  Shingles can be a bitch but believe me it's preferable.

Dr. came in and asked me 3-4 questions and walked out to look at the MRI. He entered back into the room and ignored a question from my mom (middle eastern Dr.). He said "I have not so good news, you have MASSIVE brain damage. He said it's either from lots of strokes or MS. He went on to say "it will never be better than today and that if it's MS he expected me to never walk again.



^^^^You tell this fucker you want your money back

Fuck that, GET  A LAWYER and sue those other incompetent fucks. Congrats on the better news!!

Wow!

I'm hoping that you get back to normal soon!

It's not even really the shingles. Your body reacts to the virus much like MS. In face ADEM is often diagnosed as MS and if you can't see a virus like shingles they can treat it as MS for years. In some cases the reaction is fatal. It produces lesions somewhat like MS on the brain and the autoimmune system attacks the nerves much like MS. Once you remove the virus it can go away.





 

I hope you're fully recovered soon.

Yeah. Someone I had discussed this whole deal as it was going on said they never thought it was MS, they had their money on advanced siphylliis :)



 

Damn dude what a ride. Fucking lazy ass doctors. Just damn infuriating that they could basically ignore the rapid decline in your condition at the beginning as well.



But at least you don't have MS!

WOW. That's a much better outcome than what I expected.

I get a bonus in the summer that amounts to 20-40% of what my normal gross salary is, her and dad are going to Alaska on me. This was planned before all this they just don't know it yet.



 

Nice!  We're the same age, and stuff like this gives me the willies...

I was with you up to "remove the virus."

I read the whole thing, it was interesting. Thank God that you will be okay! And I mean that seriously and literally. Thank God!

How does the virus manage to hide inside the body for so long? Some day someone will figure out how to actually exterminate the virus itself and ACTUALLY cure people of stuff like chickenpox/shingles and herpes(can all the herpes viruses lead to shingles, or is more of a chickenpox-only thing? Another odd ride down that viral family)...



I used to be a lot more into the whole virus thing, but never really got that far into studying it. I still have a very expensive book on molecular biology on my wish list on Amazon though...



 

Congratulations OP.  Glad to hear you're on the mend.

My primary Dr is a bit over cautious.  His concern about prostate cancer, is not something one looks forward to at their annual checkup.  (in addition to the PSA check)  But he isn't going to miss things so I likely won't have to go thru what you did and if there is something that needs attention, it will be taken care of.

Well not remove but supposidly you can only have the symptons described when you have an active outbreak like in the  shingles case. Other viruses you never see an outside phsical synpton to even know it's a virus.





A guy I work with, his wife was diagnosed with MS and they treated for her MS for years, like 15 years. She had a paralyzed leg along with some other stuff. But the MS never got worse and it never really got better. Eventually they sent her to Baylor Medical where they determined that she had a virus and did the same thing ADEM and by the time they figured it out the damage was done and a lot of wasted time/energy on MS. They were relieved to find out it wasn't MS and wouldn't deteriate like MS but the damage was done by then.



I've had shingles before and it was nothing like this one. Last time I had it in the back, more shingle like looking sores and pain like everyone talks about. THis time it's been at least 3 months and only got about the size of a dime or a little larger and only really itched, no pain.



I never really kept up with it since I had shingles 30 years ago. The Dr. yesterday did say there's a vaccine now to prevent an outbreak. They say shingles is aggravated with stress, as is MS. It was a pretty stressful time, we were working our businest time of the year with long hours, lots of pressure including weekends and I just moved to the city for the first time in 20+ years. I'm going back to the country and enjoy my 1-1/2 hour commute.





 

Thank you for sharing.

Now what are you going to do with your new outlook on life?

Good to hear you are going to get better. I got the Shingles vaccine as soon as I turned 50 after having a couple of friends suffer through that crap.

I forgot to mention when it first started I had massive fatiuge really before anything. My boss had lyme disease back before a lot was known about it and the test were really expensive and only one lab was doing it. He got it from a tick on a quail hunt in GA. I've known him all my life (my dad retired from the same company) and he's a human dynamo. He had heart bypass surgery and missed 3 days. He said he knew something was wrong when he would just lay down in his office and go to sleep. He's the kind of guy that you think must have a drug problem he's always on the go lol.



Since I am a big outdoorsman (I used to live/work outdoors 24/7) he suggested at least get it checked. I would come in frm work at 4 in the afternoon and be in bed by 4:30 and get up to go to work at 6:30 in the morning.



I couldn't get the first Dr. to at least put that down on the blood work so I paid a private lab to test for it and it came up negative. This was when the really symptons I had were fatigue and joint pain. I figured what's one more test going to hurt and it was easy to check.

Glad to hear you're going to be ok.

Hookers and blow, are you new to ARFCOM?





I did make a donation to the MS Society today after researching it for the last 30 days. I did just take this job and move to a new state and pretty much had just started a new chapter in my life. I was really lucky about my boss being udnerstanding. Of course I've known him all my life. In fact I just realised my team membership expired. Pretty much was working 12-16 hour days right after the first when it expired and then a couple of months where I really didn't even care lol.





As soon as the fatigue is gone I'm house shopping and going back to the grind of working. I did get out and ride my bike late yesterday. Funny thing I don't ride often but I figured at one point I would never ride a bike again. I no longer own a standard transmission car but if I find someone who has one I'll drive it for the same reason.





My normal vacations include backpacking trips. I'll probably do the same. The last one I did the teton crest trail, I might do it again. It will have to wait because I pretty much blew thru at least 2 years of vacation in the last month.





Everyone said I stayed really positive thru the whole thing, which is really odd because I'm a pretty negative guy. In fact at work I'm known as Mr. Negativity in a joking way, only because it's my job to see future problems before they happen and it helps to have a negative outlook lol.





 

Shingles suck, I had them a few years ago, on the right side of my face from my fore head, down the side of my face, extremely painful, worst 3 weeks of my life, took lots of pain killers, I was lucky and was diagnosed pretty much immediately. I was in college and had free healthcare with my insurance so why not go in if you feel like crap. I was also lucky that all my professors understood and gave me extensions to get things done, as I was pretty much out of commission for about 3 weeks, with the lasting effects maybe 6-8 weeks, the longer affects were weakness, fatigue and generally just feeling crappy.

OP , glad you are Ok . That is a scary doctor visit .

How old are you if you don't mind sharing?

Also, I think I would collapsed and started crying from the relief of hearing "Return to 100% normal in a few weeks."

And to think I was going to come in here to make a joke about being infected with the Bill Gates virus.

--------------

I had a Bell's Palsy scare the month before I left for law school.  The entire left side of my face went numb.  My GP couldn't figure it out.  Went to the dentist a week later for a scheduled cleaning, and told him about it.  He asked, "Are you under any unusual stress?"  Long story short, I was unconsciously clenching my jaw.  Not grinding, just hold my upper teeth in contact with my lower teeth all day long.  It went away the next day.

Glad I read the whole post!

Keep kicking butt!!

43. I'm not gonna lie I had a 1-1/2 hour ride home with my mom after the "you have massive brain damage, it will never be better than today" speech. That was a tough one. Not afriad to admit I had a good cry that day.



The one where he said I would return to normal I just said "I would hug you if you wouldn't get offended" and just joked about it. I just kind of looked at my mom and titled my head like "is this guy for real?"



 

I'm uncomfortable with you not having a spinal tap.