Feeling like i'm going to die (doctors no help)
 

Hell everyone and thank you for reading. If you don't feel like reading I will provide a summary at the bottom. I'm 27 yrs old male and have been suffering from a progressive weakness of my respiratory muscles over the last 11 months with no answers to doctors.

It started in august of last year where I developed weakness and pain in my left hand/arm as well as strange episodes of rapid shallow breathing. I also started having muscle twitching body-wide and my first fear was ALS. I ran straight to a neurologist who did a needle EMG and said that there were patterns suggestive of ALS. He wanted to wait and see how it progressed and do another EMG in 3 months. I waited in fear until I noticed the strength was returning in my arm and around this time my right leg began to feel the same weakness.

Fast forward 3 months and now the episodes of shallow rapid breathing are becoming more frequent and the weakness in my leg is getting more severe yet my arm now has full strength again (weird). I have my second EMG and the neuro says that I am showing signs of pinched nerve and orders an MRI. MRI comes back clean, neuro then ordered a CPK and choline blood test to rule out Myesthenia Gravis and Muscle disease. All came back clean.

He then threw his hands up in the air and said 'I'm sorry but I don't know' and drops me as a patient. I then see a pulmonologist to assess other possibilities for my breathing difficulty. He ordered a chest CT which came back in perfect health and then ordered a sleep study. The sleep study as expected came back terrible my O2 levels were in the low 20's during sleep which is dangerous. He then ordered a breathing test which came back terrible. My forced vital capacity at that time was 61% which meant the muscles for breathing are performing poorly.

With the twitching not going away after 6 months and with my breathing and weak right leg I decided to pay out of pocket to the most expensive ALS clinic in the country. They did a diaphragm stimulation and a very thorough EMG this time and the doctor said he was positive I did not have ALS and that neurologically my nerves are firing 100% and could not offer an explanation for the muscle weakness.

So this is where i'm at now. I am out of breath all of the time now and my breathing is very shallow. It seems to be getting worse a long with the weakness in my right leg. I really feel like whatever this is is going to kill me with no explanation.

I've been tested for muscle disease, and nerve issues, as well as thyroid disease. I just don't know what it could be!! Could it be a hormonal problem?

Any ideas would be greatly appreciated and thank you for reading this lengthy entry.


SUMMARY: 27 yrs old male. Severe respiratory distress/weakness and right leg muscle weakness. ALS and all neurological diseases ruled out by best ALS clinic in the country. CPK and Choline levels normal. Tested for thyroid disease which was also normal. Lung disease ruled out by CT scan of lungs. Body wide muscle twitching and muscle fatigue/shooting pains. Chronic cramping of diaphragm. No answers. Could it be hormone related? Relentlessly progressive and forced vital capacity now below 61% HELP! Any ideas would be appreciated!!! Thank you

Have you considered any alternative care - acupuncture, naturopathy, possibly chiropractic? Experts of course... check them out for ratings etc...
since you have a complicated condition....

Slight misalignments won't show to MDs they don't look/consider that , not in their training.. a chiro evauation might be beneficial esp if you ever were in an accident or sport injury..hits/falls .etc..

Were you tested for primary pulmonary hypertension?

This is a blockage in the pulmonary blood vessels, so you cannot oxygenate your blood properly. It is not common, but it happens. It is more common in women. And has a genetic component in some people. Treatment is with an IV pump containing Flolan. There are other treatments too.

http://www.lung.org/lung-disease/pri...nosis-and.html

See if you can find out if you have been tested for this.

Hi, my health started to go downhill when I was 53 and I suspected sluggish thyroid and my tests were normal for 10 long sluggish depressed years. Thyroid controls SO MUCH...and I'm just saying this as this was my issue for 10 yrs and the numbers told my MD otherwise....

In the "old" days before labs, the old time doctors gave people desiccated thyroid when they came to them with a laundry list of symptoms/conditions....

I see only integrative MD's and work with my health on my own as much as the internet and my friends help me, and they are all helpful.

Two books that are lifesavers on thyroid is: Living Well with Hypothyroidism....... Mary Shomon and Stop The Thyroid Madness, Janie Bowthorp.

I have a post on DHEA here in the "sexual" section here....DHEA starts to decline in our bodies at 20-30 yrs of age. There are lab tests for this hormone. My integrative MD first tested me over 10 yrs ago, I had never heard of DHEA.

These are just 2 of my suggestions that could be OFF and need to be addressed more.

Hope you can get help and start to feel improvements.

I read, talk to people, joined support groups...you name it...I'm considerably older than you but we are all unique and our bodies do what they do, when they do it.

You talk about muscle weakness....here is an informative link, HypoT is mentioned here as well.

http://patient.info/health/muscle-weakness

Mostly I just want to encourage you not to give up. I've had a few different health problems that took sometimes a few and sometimes more than a few doctors to get to the bottom of it all. And one affliction, really only needed vitamins to correct...something that was a big, but very nice, surprise.
An integrative doctor might be someone to try. Just keep asking questions, reading and moving forward. Best wishes.

I'm so sorry you are dealing with all these symptoms. Have you considered a tick borne illness?

I recently listened to a podcast where individuals had ALS type symptoms and had Lyme or some other tick borne disease.

http://methylationsupport.com/dev/podcasts/

Scroll down to the one with Lyme and ALS in the title.