Sick of No Answers

[NotKnowingSucks]

I really Need Help Here - Comprehensive List of Symptoms
What is wrong with me is my question?
I am a 36 year old Male

When symptoms first started I was 31 years old I am now 36 and the symptoms have come back on me recently. Here are my symptoms from onset to how I am feeling today:

2005 Onset

November 14th
- Got sick, seemed like an infection of some kind. Was sick for over a week and got worse so went to doc.
- Doc gave me antibiotics (amoxicillian) a refill or my inhaler because i have had sports induced asthma my whole life and he did want it to get bad for me

December 2nd
- Went on thanksgiving vacation to Hawaii and got worse the entire time I was there so when i got back i went to the doctor again
- doctor prescribed me a stronger antibiotic (some sulfate drug) and some prednisone and told me to take it only if i needed it

December 14th - December 22nd
- Was getting way worse so I decided to start taking prednisone (could hardly breath anymore)
- Chest opened up and seemed like I was getting a lot of the mucus out of my chest yet i still felt sick like the antibiotics just weren't working still
- Chest got a lot better but head still felt full, I still felt sick and felt again like I need strong antibiotics but I am no doctor so I stayed the course

December 23rd
- I still felt sick although my chest felt better, started packing for my trip to the East coast with my girlfriends family
- I was so looking forward to this trip yet felt very head sick still (all stuffed up)

MAJOR ONSET OF PROBLEMS
On an airplane from LA to NYC
December 24th
- left ear started radiating heat
- left face started to radiate heat (felt like my head was cut in half and only - - the left side was very hot, like a bad sun burn)
- left neck and shoulder started to burn also
- Had some major dizziness all of a sudden
- Got off the airplane feeling dizzy and not with it, still having the burning and - left sided awkwardness

December 25th
- Went to the ER doctor performed CT scan on me and showed completely normal
- Visual horizontal nystagmus reported I was prescribed vertigo pills and sent on my way
- Felt even worse, dizzy, out of sorts, malaise but continued on with my day

December 27th
- Had some sort of attack, woke up soaked in sweat with bile taste in my mouth (Girlfriend told me it looked like a seizure) All my muscles were tight
- Major weakness on my left side, neck, shoulder
- Went to another hospital got an MRI with contrast done
- Neurologist stated I had torn my vertibral artery in my neck and that I could have stroked out and they rushed me to columbia presepeterian hospital stroke ward to help me
- Major fatigue

December 28th - Columbia Prespeterian Hospital
- Blood Thinners given (coumadin)
- They performed heart doplers
- neck doplers
- spinal tap
- MRI with contrast
- Xrays chest
- They found nothing that could have explained the issues I had, they did not agree with the vertebral artery tare but they had no idea what was causing the issues and that if it was a blocked artery it was cleared now.

January 1st 2006 (Back in Los Angeles, couldn't sit up straight on entire flight or I would very quickly get sick to my stomach)
- Couldn't sit up straight without getting sick to my stomach within 60 seconds
- doctor found out that the spinal tap they did to me did not close up correctly and I was leaking spinal fluid
- Doctor did blood patch on my spine which closed off the fluid coming out of my back
- I felt better but still had major issues going on from before

January - March 2006
- Nerve pain and burning down the left side of my neck, shoulder and arm
- Night sweats
- irregular heartbeat (seen on two different EKG's at the same hospital)
- heartbeat slowed way down at night to a point where is kept me up, hard pounding
- vertigo
- soar left ribs
- Stiff back, major pain down my spine
- Spine started cracking on every vertibre ar at least it felt like it
- Twitching all over my body (no place was spared, everything twitched)
- Major fatigue
- Could barely make it through a day of work with lots of pain meds

March - June 2006 (during this time I began treatment for Lyme Disease seeing I am from East Lyme CT and no other doctor could help me, I tested positive for a Lyme co-infection called HGE titer was 1:160 which was highly positive or so the doctor said, I was hoping for anything at this time)
- left side weakness in neck
- Left side weakness in swallowing
- left side jaw weakness
- Left side weakness in body
- Left Arm, shoulder, leg (not clinical weakness though)
- Went to dentist for root canal thinking maybe an infected tooth was causing some sort of infection wreaking havoc throughout my body (doctor said tooth was very infected
- Cracking in right jaw joint (first time my jaw ever cracked in my life) this continues to this day
- During this time I also was seeing a neurologist, infectious disease doctor and an endocrinologist at kaiser permanente who tested me for everything under the sun (had MRI with contrast of head and neck, 2 EMG's, 2 NCV's, every blood tests available, 3 neurological clinical exams, barium swallow test all came out normal or within normal range) they made a joke that I am the million dollar man, all these tests and nothing was wrong with me although i was very sick at the time so it wasn't funny to me
- Was in and out of hospital with symptoms 10 times during this time period looking for answers and never getting them

July - Oct 2006
- According to my notes I came to feel better in October with many of my - - - symptoms starting to go away
- Left side weakness went away on my body
- I had tongue and swallowing issues still but not as bad
- I felt 80% back to my old self
- I could surf again, play soccer again
- Way more energetic and grateful thinking the Lyme treatment was working
- Jaw still cracked everyday

April 2007
- Symptoms came back
- left shoulder weakness
- left swallowing problems
- jaw weakness
- energy level decreased
- started to see floaters in my eyes
- Went to see ALS specialist at USC who saw me and after a brief neurological exam stated I definitely didn't have this disease, although I was scared cause my grandmother died of it and my symptoms were bad

January 2008 - Septemeber 2011 (stopped heavy Lyme treatment)
- Symptoms in remission or ignored
- Didn't really have any issues with weak left side anymore
- jaw weakness went away
- swallowing wasn't a major problem (although still a problem just not as bad as in the past)
- Left arm, shoulder, leg weakness went away
- Recurrent infections occurred every 3-4 months (sinus, chest) took antibiotics and they went away
- still had floaters and the floaters seemed to get worse over night
- TMJ or right side jaw cracking remained cracking 7 - 10 times per day
- everyone kept telling me it was all in my head, I hate going to the doctor and never had gone before 2006 so for someone to say it was in my head was horrible.

Oct 2011 - Present
- floaters and flashes in my eyes made me want to see optimistic
- He said my my symptoms I should go to Retinal Surgeon ASAP
- Retinal Surgeon said had retinal tear treated and repaired with laser (right after laser treatment is when all the major symptoms came back on me full force)
- vision problems (retinal surgeon says eyes optic neuritis)
- Left side jaw weakness (feels like it will stop working if i use it too much but it hasn't yet)
- left side neck weakness
- left side swallowing problem (hyoid bone popping like crazy when i swallow)
massive pressure headaches (CT scan showed swelling in my left side rear brain area)
- left side face burning and radiating heat
- left arm and shoulder radiating heat
- left eye pressure pain
- major fatigue
- difficulty concentrating
- difficulty remembering names and things I used to remember quickly
- depression (due to not knowing what the hell is going on for 5 years)
- Left hand gets really cold to the touch (I am a lefty)
- Body temp low when waking up 97.1 on average
- forehead scaly, dry and flaking off skin
- pain in certain points on my spine (feels like pressure pains)
- Left shoulder feels like jello
- Feel stronger in the morning and by time work is done I feel very tired, weak and need pain killers
- muscles twitching all over my body

11/25/11
- Went to Mayo clinic Saw Neurologist
- He started off by saying it was all in my head (before i was even examined, horrible neurologist)
- during his clinical exam he found very brisk reflexes in my left arm (he tested is 30 - 35 times compared to the right arm).
- No other findings in clinical exam but he also stated he is not a neuro muscular expert so he is not able to determine wasting (left side mastoid muscle is much smaller than right side mastoid, has been since 2006 onset)
- Set me up for tests all this week and next week and he said it was all for me not for him cause he is sure it is all in my head and that I needed to see a psychiatrist and not a neurologist.

Needless to say I am going back to LA to get all these tests done now that a neuro at Mayo said i was nuts, my mother is a psychiatrist, I am a successful high level scientist who is very sane but obviously upset due to onset of symptoms that have never really been worked out for me.

These symptoms seem to have gotten better and gotten worse a few times over the past 5 years or maybe I just got used to them. They are at their worst now and getting worse every day. I now have a pressure like pain on my 5th thoracic vertebrae, painful to the touch, if i extend my arms out it pinches the vertebrae and it feels like a small ball between my shoulder blades (swelling no doubt)

Family History of Sickness:
4 generations of Thyroid issues from graves disease to hypothyroidism on my fathers side
Grandmother died of ALS age 71 (Bulbar Onset), only case of this disease noted in the family (this was on my mothers side) all other family members lived to very old ages (my grandmothers sister just died at 94)

Current drugs:

1 mg of klonopin at night (last 5 years)
500mg vicodin (need at least three weeks of these at night for pain and uncomfortable feeling)

Somehow this really helps me feel better, my jaw feels less weak if that makes any sense, don't want to be on this anymore

I am a smart guy and very level headed so I think I have some kind of recurrent disorder that keeps coming back but I don't know why or how

I have gotten no help on this for a very long time and I could really use some help here.

ALS still stuck in the back of my mind because of the swallowing and jaw weakness I have right now along with pressure points on my back (thoracic supposed to be the strongest part of your back).

I know your not doctors but anyone have anything like me before? Any help from you wonderful people would be amazing right now.

 

[Ms. Pie]

Basically, the only ALS symptom you have is that a relative had ALS. I don't know what you have but it does not sound anything like ALS to me.

Good luck to you.

 

[llwlpn]

I agree with Ms.Pie. Your symptoms do not sound like ALS. If you had ALS that started in 2005 you would know it by now. Also, ALS symptoms don't come and go they come and stay.

Good luck in finding answers.

 

[Okie2]

Please don't dwell on ALS, it does not sound at all like the things those of us that have it have gone through. Please find help with this, and good luck.

 

[Al]

What the heck is going on this week. Every new post is a longer book than the last. Did I miss a memo about a contest?

AL.

 

[BarryG]

Well he's a smart guy who can type so he's gotta use a lot of words to tell us that he doesnt have ALS.

 

[Alyoop]

Are you having another brain and spinal MRI to rule out Multiple sclerosis? With a history of optic neuritis and symptoms that come and go, you need to get ms ruled out. The mayo neurologist would have thought about that though!

Thankfully you do not have any symptoms of ALS at all.

 

[trfogey]

Well he's a smart guy who can type so he's gotta use a lot of words to tell us that he doesnt have ALS.

He's not so smart, actually. If he were as smart as he claims to be, he'd see the difference between his symptoms and ALS. And, if he had really even read any of the stickies, he'd know that what he thinks are ALS symptoms actually aren't. So, it's pretty obvious that he's too stuck on himself to be able to relate to anyone else's experience.

 

[notme]

I'm with Aly. Optic neuritis is classic for MS, as are symptoms that come and go. No clue why he'd even be considering als at all

 

[BeckyUK]

I'm starting to wonder why this forum has a section called 'Do I have ALS?' if all people do is give posters asking questions a hard time. The original poster is obviously ill and concerned and wants the benefit of people's opinions, so why treat him as if he is an idiot? Just because he might not have ALS is no reason to be tough on him.

We've all been there and needed help, but please don't invite questions if you don't want to answer them. I don't think I'll bother reading these forums any more as it really depresses me how people can dismiss the concerns of others who so desperately need help.

 

[Ms. Pie]

Becky, we did give him some answers. His symptoms don't sound anything like ALS.

 

[trfogey]

I'm starting to wonder why this forum has a section called 'Do I have ALS?' if all people do is give posters asking questions a hard time. The original poster is obviously ill and concerned and wants the benefit of people's opinions, so why treat him as if he is an idiot? Just because he might not have ALS is no reason to be tough on him.

Nobody's been tough on this person -- yet. However, if he continues to tell us how smart he is and that the list of symptoms he has listed have anything to do with ALS, I imagine he'll draw some criticism, as well he should

The reason that we have this forum is to stop hysterical individuals like this person from posting all over the rest of the board. And we answer most questions that are put to us -- at least the ones we can answer. And we will continue to answer questions that are within our competence to answer.

We've all been there and needed help, but please don't invite questions if you don't want to answer them. I don't think I'll bother reading these forums any more as it really depresses me how people can dismiss the concerns of others who so desperately need help.

Obviously, you don't agree with how other people have responded to this individual, so I invite you to respond to the original poster in the way you think he deserves. Put your knowledge and your experience on the line here in public on the forum so we can critique how you are handling things. Or are you one who'd rather sit on the sidelines and snipe at the ones who are actually trying to get information across to these folks in their time of fear and need?

Time to put your money where your mouth is. What words of hope, knowledge, and wisdom do you have for this poster? Show us how it ought to be done.

 

[hn7609]

If you were able to type that manuscript in less than a day I'd say that you do not have ALS

 

[HelenL]

haha, that thought crossed my mind as well... I have to admit I also put together a timeline when I went to the ALS specialist, but I had already been diagnosed, and was trying to convince the neuro that I couldn't have it!

I guess it could also be copy and paste.. but what strikes me, is having actual dates when something happens, I can barely remember what I ate from one day to the next. It's obvious something is going on, but going on for this long, it's pretty obvious that if you're still walking, moving your arms and eating, then you don't have als. I was talking to my friend who was visiting this weekend, and she was shocked a bit how much worse my walking is from this time last year.

Notknow does suck, but looking for the answers in the wrong place isn't going to solve the issue, and you have to listen to your docs... not all of them can be wrong despite what my Dad always thought!

 

[trfogey]

Most of it is cut and paste. Found this post on another health-oriented board:

I really Need Help Here - Comprehensive List of Symptoms - Neurology Message Board - HealthBoards

The only stuff that appears to be new for our benefit is his visit to the Mayo Clinic on the Friday after Thanksgiving, which appears to be a bit of a stretch, but.....you never know.