I'm a 27 yo male and state health insurance has failed me by making me wait too long.

As I type this, I am nearing respiratory failure. My diaphram muscles have slowly been weakening since the middle of July and despite my many attempts to seek help, I have been rejected by ER's and ignored by my medi-cal appointed neurologist.

Back in July, I started having difficulty breathing at night when laying on my back. In the coming weeks this begins to get more severe with breathing difficulty during the day. At first, I couldn't properly explain it to my doctor. I'm a salesman and I first noticed that by the last sales call of the day, my lung muscles would be on fire. Drawing air in was like flames that could only be put out by resting.

Then the twitching began.

First in my calves, then all over my body. This was accompanied by a profound weakness starting in my left fingers that got progressively worse (ever so slightly) by the day.

It wasn't long before the weakness entered my right foot. The feeling I would describe is like a worn out muscle that doesn't improve with rest. My leg got so weak that I needed to use a cane by september.

I couldn't understand what was happening to me. The twitching throughout my body and weakness in my limbs were GETTING WORSE and there was no explanation. Obviously I was mortified when Dr Google pointed me in the direction of ALS. The research I did on ALS was extensive to say the least but even then I couldn't find a case quite like mine involving multiple areas being affected. The vast majority of information stated that most cases start in one place and spread; but now my breathing has taken the forefront of concern as the episodes of flames and weakness drawing air in get so bad, I collapse and 911 is called.

They took my case very seriously (at first), performing a CT, EKG, and multiple blood tests. They found nothing wrong. Everything was normal. No heart issues, embolism, interstitial disease, blockage, or obstruction. They did however find a 'elevated hemi-diaphram' on my right side via CT AND Xray Yet they insisted that 'this is nothing'. 'Maybe you were born that way', 'You could have been inhaling at the wrong time'. They stabilized me and sent me home ruling it as 'Anxiety'. No matter how much I tried to explain to them my neurological symptoms, they just looked at me funny and told me I was fine.

I'm no idiot...Elevated diaphragm on a ct can't be the same as an xray.

Fast forward 1 month to Oct and the symptoms are worse still. I've fallen silent as my diaphram has become so weak that breathing is a full time job. My back and stomach muscles are tired and overworked. I notice that with every deep breath I attempt, my shoulders shrug and my stomach tenses to assist in getting the air in.

I don't know what the hell is happening to me.

27 years old, twitching everywhere: legs, diaphragm, toes, lips, neck, shoulders, arms, and back; weak lung muscles, and arm + leg.

It's Oct 3rd and I'm finally able to see my neuro. His diagnosis: Hyperventilation. Tells me that hyperventilation causes all the symptoms i'm having: twitching, weakness, breathing fatigue etc.

I break down into tears.

I plead to the doctor that he's wrong and it must be something else. He pulls out a reflex hammer...

My reflexes are extremely brisk he says. My right leg (the weak one) in particular shoots into the air. "EMG" he says.

I immediately tell him 'i'm already half dead, I won't make it to that appointment' He calls me foolish and sends me on my way.

Unfortunately, I think I was right. My breathing is so weak as I type this that I'm certain I won't live through the weekend. My EMG is two weeks away anyways, and even if I do manage to survive that long, there is no way i'll see a diagnosis.

I just keep thinking (respiratory onset ALS at 27?!) impossible!. The odds truly are incredible; about .03 in 1,650,000.

It's Oct 17th and since my neuro appointment, I've been to the ER 7 times. That's right....7. What a waste of time that was. I finally understand how damaging an initial ruling of 'Anxiety' can be. I walk in, tell them I can't breathe, they take my vitals, and then I wait for hours just to have a doctor tell me i'm fine and are hyperventilating due to anxiety.

In fact, the last time I visited the ER, they didn't even turn on the vitals machine. The nerve...

So, obviously i've given up trying to get help. Medi-cal didn't care enough to process my referral in a timely manner and I will suffocate before I see a diagnosis.

My body is like an electrical twitching storm, or better yet: a machine breaking down. Every major muscle group takes turns twitching one at time. Most of the time the twitching comes in 'attacks' and a spot will 'spaz' for a few seconds before stopping. My right leg is almost useless, barely able to support my weight at this point. The same goes for my left arm; which keeps me in suspense wondering which will fail first. My arm? lungs? or leg? My bet is on my lungs

Finally, If I make it to my EMG it will be a miracle BUT i've since found peace with the situation. It's obvious that whatever this is, is not treatable. It must be some terminal mystery illness like ALS.

I've learned to take it 'minute by minute' 'breath by breath'. I just hope that god will be merciful on me and take me in my sleep.

Thanks for reading. It was important to me that I write this as I think a written account of my struggle should exist somewhere, and what better place than the internet.

If I don't return, godspeed.

Bryan Martinez

Dear Bryan,
I hope you find a cure, and soon. May the Creator have mercy on you. As long as you're alive, there is still hope!

-Jane

Hello wesker17,

I am curious why you are ruling out anxiety for your symptoms

Stress, anxiety and panic attacks have very real symptoms Anxiety can cause breathing difficulties as well as Neurological type symptoms

If you look through the link below you will see how stress and anxiety can make a person think and feel there is something seriously wrong.
http://www.anxietycentre.com/anxiety-symptoms.shtml

Hundreds of people each year end up in ERs for what they believe is a heart attack but in reality it is stress and anxiety.

If you have not been treated for anxiety you might talk to your Physician about doing so. Treating anxiety can, many times, decrease if not completely resolve all symptoms.

You may not be happy with my suggestion but in treating "anxiety" you can affectively disprove all of your Drs. that your symptoms are anxiety based.

How can that be? Simple.

If you take an anti-anxiety medication for X amount of time (giving it ample time to be effective) and there is no improvement in symptoms then you have discounted anxiety as a cause. If on the other hand your symptoms improve then you can then say "it's only anxiety, thank goodness" and move on with your life.

A person can spend hundreds of thousands of dollars going from Dr. to Dr. test to test and sometimes it was completely unnecessary.

I am not trying to down play how you are feeling and what you are experiencing. I would simply like you to try the less expensive and easiest way to, at least, rule out or in a reason for your symptoms.

As someone who has a Neurological disease and that has also dealt with anxiety on an extreme level I would like to offer you hope that you, more than likely, have time to live you life.

Take care.

Dear Bryan,

I am sorry to hear of your difficulties. I do not know anything about ALS. I am not a doctor and certainly unable to assist with your situation.

I do not doubt how you are feeling but I do find it strange to be turned away by so many doctors if your lungs are not functioning. Seven trips to the ER and NO one felt you had any medical condition at all? Not counting the doctor(s) you have seen in office.

I presented at a doctor's office with difficulty breathing and was RUSHED to the hospital. Like the monopoly game, I was not allowed to pass "go", collect $, or anything. It was directly to the hospital, admitted, and a nuclear lung scan performed promptly.

Respiratory distress is taken very seriously by anyone I know in the medical community. What were your oxygen saturation levels when you went to the ER?

Next month will be 24 years since my one and only respiratory distress event. I did not think I would survive. I thought sure I was going to die that day. When I asked (could barely speak) the doctor if I was dying, he refused to respond which made me feel that I might be correct in my assessment,.... that this was a critical situation. I could not walk. Actually, I could not even crawl.

My doctor saved my life that day. He is still my doctor and not a day goes by when I see him that I don't thank him for the past 24 years of my life. I am also grateful for the meds he ordered and they gave me intravenously that made me turn the corner and breathe again. Oh, did I mention that I had a fever that was nearing 105? So, I do know what it feels like to not be able to breathe and to think you are on death's door. The only shaking or trembling I had was due to the high fever. (No twitching.) I am NOT comparing my symptoms of 24 years ago to your symptoms.

Self-diagnosis is not a good idea without the proper medical training and even then, doctors should consult another doctor, even WITH their training, and not self-diagnose.

If your only indication of having ALS is by your own self-diagnosis, you are creating a problem for yourself. I am not saying you DO nor am I saying you DON'T have ALS. I am saying you need to have a complete work-up to find the cause of your symptoms.

It will be very sad if you are being dismissed but you also must be open to finding out the reasons for your symptoms. Feeling that you are at death's door with NO medical concurrence is putting too much stress on you.

Doctors are human and do make mistakes. They "practice" medicine. I just don't see how so many different doctors could ALL be so inferior to not find any reason for your symptoms.

My hope is that you will not only make it through this weekend, but also that you will be around for a long time writing to us on NT as you seek answers and solutions to what ails you from your doctors.

I hope you realize that you have many of us concerned and will be looking for additional posts from you. Please let us know how you are doing from day to day. Wishing you better health and a diagnosis. Knowing what you are dealing with is part of the battle.

Waiting to hear from you again.

Update: It's sunday night and i'm still here. My ability to draw breath still continues to gradually weaken.

Thank you to all who read and replied. It seems the general consensus here is 'Anxiety' which i'd like to put to bed. Anxiety has never been an issue for me, that being said it's definitely showed it's face when my breathing weakness became alarming. I can't say that i'm not in emotional distress as my lungs continue to fail me, but that being said Anxiety is not to blame in this case.

When the doctors could not find any issue with my lungs, heart, thyroid, etc. It was they who first suggested something neurological.

Not being a doctor, I know that the internet is not the place for any type of self diagnosis and Dr google in my case threw nothing but ALS at me as I googled my symptoms.

I'm scheduled for an EMG that took far too long for the state to process. As I said earlier i'm doubtful I will make it to that appointment as my ability to draw air in is almost completely gone.

A list of my symptoms:
1. Profound and progressive weakness in breathing muscles
2. Constant twitching,jerking of muscles in right leg and diaphragm with sporadic twitching elsewhere
3. Right leg unable to hold my weight (using a cane) Progressive over 4 months
4. Hyperreflexia (as noted by neurologist)
5. Exaggerated emotions (my words) this is hard to explain but I've progressively become more emotional. The most inane things my make tear up easily. This could be stress I think but something is not right about it in from my observation. Needless to say, i've never been a cryer.
6. Memory problems. Again could be stress, but i've had the the most difficult time lately putting my day, and events in order. Some things that happened in 'that day' feel like a week ago (such as a family member visiting).
7. Eye fatigue. Imagine reading and your eyes are cooperating with you in reading the lines. My eyes tend to jump from place to place especially when tired.

Thanks to all for your concern. I'm still here for now. I will check back again and try to reply if I can.

-Bryan

I am so sorry for what you are going through.

Can you give us a list of the medications you are now on and the dosage ?

I will keep you in my thoughts and prayers.

Debi from Georgia

Poor breathing (rapid shallow breathing) causes all sorts of alarming symptoms. Blowing off too much carbon dioxide upsets the acid/base balance in the blood.

Here is an exercise to minimize rapid breathing and to help stabilize your body.

http://altmedicine.about.com/od/opti...m#step-heading

Hi Bryan,

Thanks for posting an update. I am very glad you made it through the weekend and hope you continue to post and seek answers from medical professionals for your symptoms.

In your list of symptoms, the one that gives me the most concern is your breathing problem. The others, while not normal, and need investigation, are not life-threatening in and of themselves unless the underlying cause of the symptoms is a life-threatening condition.

Breathing IS essential for life. You mentioned having CT, EKG, and multiple blood tests. You also stated that all were normal but do you have a list of the blood work performed and the lab results? I am assuming the CT was a "chest" CT. Is that correct?

All your symptoms began within the past 4 months? What was your health status prior to the past 4 months?

I hear you when you say that your symptoms are "causing" you anxiety. The pain and inability to speak, move, breathe, during my respiratory episode was very frightening. I was absolutely fine, healthy, one day and the next day I woke up feeling a little out of whack and had some difficulty dressing for work. By the time I got to work, I could barely walk from the parking lot into the building. When I did reach the building, my co-workers said I looked like death walking and was rushed to the employer's nurse. She put me on oxygen and took me to a family member. By then, I could barely speak. Family took me straight to the doctor's office and was immediately sent to the hospital.

The sudden onset, the inability to speak, walk, the concerned look on the faces of others, the not knowing what was going on with me, if I was dying, were all very frightening. One minute I was a very healthy active person and then woke up the next day slipping away FAST.

The NOT knowing what is causing your symptoms must be frightening to you, too.

If you want to share what blood tests and results, your oxygen saturation levels, etc., someone here might be able to give you some ideas. We can't diagnose you but we can offer ideas to discuss with your doctors. Did anyone at the ER do an ABG? (arterial blood gas) Are you on any medications? Do you take any supplements?

I realize you have many other symptoms other than your difficulty breathing, but that is the one that concerns ME the most. For diagnostic purposes, ALL your symptoms must be taken into account, but since I am not here to diagnose you, I am concerned mostly about the life sustaining act of breathing for you.

My concern from your depiction is whether you are having pain and difficulty breathing but actually getting enough oxygen to your body or if your lung function is compromised to the point that you are NOT oxygenating your body and mind.

Viral and bacterial infections need to be eliminated if not already done.

Do you have a primary care doctor? What does he/she say about your symptoms? Did I miss that in your post? I only recall your mention of ER visits and seeing a neurologist. Other than ER docs, how many docs and how many visits have you had during this several month journey of symptoms?

Wishing you the best.

Hi Bryan,

Have you been to an Ophthalmologist about your vision? If not that would probably be a good idea to make sure your vision is fine. If vision tests fine you might be dealing with eye strain.
http://www.mayoclinic.org/diseases-c...n/con-20032649

Is this something that happens when you are falling asleep, asleep or both? Sometimes sleep disorders can cause this to happen. A sleep study can rule in/out if this is due to a sleep disorder.

Bryan, if you are hyperventilating, or you are not breathing correctly it can feel like you are unable to get a breath. Many people, for different reasons, forget how to breath correctly. Sometimes we need to retrain ourselves on proper breathing techniques

For many years I did not realize my breathing was shallow and I would (unconsciously) hold my breath and I would hyperventilate. It was suggested (by a Dr.) I use a small paper bag (paper lunch bag) and put it over my nose and mouth and breath This helps to regulate your breathing.

I had my son do this one time when he had a migraine and the pain was bad enough he was hyperventilating. Due to the hyperventilation he was experiencing numbness and tingling. The paper bag helped bring his breathing back to normal and the numbness and tingling went away.

Using proper breathing techniques can also be very helpful. They can take time and practice but they do work. This can help in a wide range of health problems. I hope you will at least try it
http://www.coedu.usf.edu/zalaquett/H...ens/breath.htm

Hello everyone,

I felt compelled to update for everyone concerned despite feeling pretty awful.

In my last post I mentioned being referred for an emg test of my muscles/nerves.

My neuro called and took me in early.

The result? Very bad EMG.

It's funny because at first the neuro was so confident that there wasn't a neuro muscular problem.

He does my right leg first and is surprised "hmmph could be a myopathy in your leg, have you had any back injuries?"

Then he finds my spinal ct that came back normal.

Next is my left arm which returns an equally bad result then he goes: "Intersting, could be ALS but thats a fatal disease! and very rare"

He then is intrigued to test my other limbs: my left leg returned a pretty good but not great result as did my other arm.

Then he tests my neck and the machine goes haywire. He tells me "Relax relax! are you holding up your neck?"

He adjusts my pillow and tries again, the machine continues to go haywire. "I think I got a bad ground"

He makes some adjustments and still the same result.

Then he goes "I'm going to refer to USC Irvine" and walks out of the room.

He disappeared. I couldn't talk to him despite asking the desk he was all of a sudden with another patient and too busy.

So yeah,

My biggest fears realized. I have ALS, a disease for which there is no cure. My lungs weakening weren't hyperventilation. It wasn't in my head.

Now, i'm at peace. A mystery solved. They only refer people to universities that have rare diseases for study.

27 years old which a disease that is usually diagnosed between 40-60. What a shame.