Unknown Prolonged Illness Of Two Years Duration

[RCA 7591]

Hello all,

My name is Ryan. I have quite a long story to tell. If you have some time to read the comments below, I'd appreciate some advice on this situation.
I'm an electronics technician by trade, and have been working in this industry for the past 10 years. On September 8 of 2004, I developed an acute onset of shortness of breath, numbness/tingling sensation, a rapid pulse, vision loss in one eye, cold extremites, and clenched hands. Within a period of five minutes, I went from normal to near "paralysis", unable to breath. I haven't had any similar feelings during my life. My father ended up calling for an ambulance.
Hospital testing revealed an abnormal arterial blood gas, showing alkalosis and low O2 saturation of 86%. No other abnormal findings were appreciated, and I was released on Albuterol. It was felt that "heavy metal poisoning" was the culprit, from using a lead based solder alloy in my work.
Upon arriving home, the same sequence of events took place about two hours later, but were far less severe. While in the care of my family doctor for follow-up, an event similar to the first transpired. This time, the pulse-ox was reading an O2 saturation of just 81%. The doctor called for an ambulance. Again, no abnormality (other than the ABG) was appreciated.
I have seen dozens of specialists since this time, with no definitive etiology for the symptoms. It was suggestesd that I speak with a psychiatrist (I did), who found no abnormalities. He prescribed Klonopin, which I'm reluctant to try (0.5 mg PRN). My concern is respiratory depression. Any thoughts?

Ryan

[RCA 7591]

Some additional comments:

EKG - Stress Test - Echo are abnormal. The EKG reveals right bundle branch block, the echo reveals an enlarged left ventricle and increased pulmonary pressure of 22 mmhg.

The stress test suggested a blocked RCA (right coronary artery).

Recent cardiac cath was normal, and this is what has led the cardiologist into believing that anxiety is a large component for the symptoms.

Blood pressure on two medicines (Atenolol and Diovan) spikes to 230/130 for no apparent reason. Pheochromocytoma was ruled out.

Recent psych evaluation was completely normal. The psychiatrist felt that Klonopin may be useful regardless, and prescribed 0.5 mg twice daily on a PRN basis. I'm reluctant (terrified) to try the Klonopin, due to breathing problems and apnea.

The symptoms are variable, other than the shortness of breath. In general, the symptoms consist of:

-Tachycardia
-Numbness/Tingling
-Imbalance in coordination
-Vision disturbance
-Cold hands, blue fingernails
-Extreme shortness of breath
-choking sensations

An "event" can last anywhere from 5 minutes to several days.

Any thoughts?

Best regards,

Ryan

[chcnme]

Hi Ryan.  Very significant history there with some major warning signs.  The symptoms you have had with an O2 saturation of just 81% and abnormal EGK and right bundle branch block with these BP readings and blue fingernails / cyanosis is .... it's unconsciounable to me that ANY doc is saying this is ANXIETY.  Anyone of those wonder specialists you've been seeing EVER talk about doing a cardiac cath????  Or the possibility of pacing you with a pacemaker ????  For Christ sakes, this would sure seem to warrant a cardiac catheterization if one was ever warranted. I'm sorry - but you have VERY significant signs of coronary insufficiency, and you need to get all your records and go see a cardiac doc who knows what the H he is doing.  Go quick is my advice. Best of luck.

[RCA 7591]

Hi chcnme,

After the positive stress test (showing possible RCA blockage), a cath was performed (back in November of this year). The cath was completely clear (and the muscle looks good, according to the cardiologist).

Echo showed that the left ventricle increased from a high normal of 56 mm to 62 mm, a mild enlargement. This was over a two year period. The cause was pinned on high blood pressure, for which I'm taking several drugs for at the moment.

The EKG is showing an RSR complex in leads V1 and V6 (right bundle branch block), and the EKG was "normal" two years prior as well.

Several other life-threatning etiologies have also been ruled out (pulmonary embolism, and pheochromocytoma specifically).

After the cath was found to be negative, it was then suggested by the hospital that I speak with a psychiatrist about the symptoms I'm experiencing. The hospital mentioned that the abnormal findings do not "jive" with my physical symptoms.

I did speak with a psychiatrist last week, a one-hour session. Nothing obvious was found, even anxiety. Regardless, the pyschiatrist prescribed Klonopin 1/2 mg to take on a PRN basis, as he felt it may help with at least some of the physical symptoms.

Would it be worthwhile to try the Klonopin? Or, is this risky in light of the shortness of breath?

Best,

Ryan

[chcnme]

Hi Ryan.  I saw where I missed that they had cathed you.  Sorry about that.

Reserving too much judgement and with due respect to your docs or the hospital telling you to seek psychiatric care, well - your symptoms also do not "jive" with anxiety.

What I'm seeing  (in spite of what they've told you is a normal cath and ... that your symptoms are not cardiac in origin) there is a positive EKG with right BBB (the block).  While that is no huge "big deal" and is quite often seen on EKGs, it becomes significant if the patient begins having symptoms (dizziness, passing out, cyanosis, blue fingernails,02 sats way down, shortness of breath, tingling, enlarging left ventricle.)
Many cardiac patients who are symptomatic like are eventually recommended for pacemakers.  And there symptoms abate.

Reading your notes, I'm surely not comfortable with findings of the diagnostics and your symptoms and someone saying you need to see psych because it's "not jiving".  In spite of any anxiety you might have, you also have cardiac disease in my opinion.

I don't know how  many cardiac docs are in your area or what level of expertise they have, but if you were my family with these findings I'd be getting you somewhere for a second opinion.  I would tell that cardiac doc I wanted a second opinion, too.  Are you seeing a pulmonologist, too?  Are you on hand-held or nebulized treatments with the Albuterol?  

At any rate, I hope I'm not sounding too assertive or aggressive or ... like I totally think your doctors are giving you the brush off, or ... are chalking this up to anxiety when they shouldn't be, but - that's what I think  (but I'm here, and you're there).  But I sure think you deserve a second opinion. No ifs ands or buts about it.  

[chcnme]

Oh - and on the Klonopin - well, it will help any anxiety you are having, BUT - I think it should only be given (or taken) with the understanding that it's being prescribed to treat symptoms of anxiety that are thought NOT to be cardiac in origin.  I would make someone put that in the record.  And.. I also wanted to mention - you still have some slight enlargement of that left ventricle. Does someone have your BP under control?

[RCA 7591]

Hi chcnme,

Very good comments, and much appreciated. You raise some excellent points, and I agree.

Frankly, I don't feel "anxious", but rather "ill". Sometimes, I do feel almost normal, but in general I do not. I agree on the EKG findings, and these are rather significant changes over a short two-year period (as is the enlarged left ventricle). Certainly, some physical change has occured, but that change has yet to be diagnosed.

To further back the EKG findings of inferior ischemia (flat T's in all inferior leads), the stress test was also abnormal. However, the RBBB was reversed with excersise, and tends to occur only at rest. The cath was clear, so no apparent cause for this ischemia can be determined. Perhaps the actual cause IS heart block.

My heart rate is quite variable. It can range from 35 to 150 bpm, and change rather abruptly in a short period of time. At rest, it is generally in the 30's. This did *not* concern the doctor (but I am concerned, this is LOW!) The Atenolol (a beta blocker), only serves to lower it even further.

Blood pressure is volatile, hard to control. Out of a dozen different medicines, only Diovan seems to help. The average is 146/95, with multiple daily spikes to 200/100 +. Again, no obvious cause was appreciated. Cushings, Pheo, Renal Artery Stenosis were ruled out.

I cannot take the Albuterol or similar inhalers, as they increase my blood pressure severely. This also occured after a four day trial of Prozac (which also made me ill and jittery).

Being just 23 years of age, the doctors are very hesitant to diagnose anything cardiac, and would rather blame everything on anxiety. Fortunately, the shrink did not agree (and he did, in fact, note that the Klonopin was to "give me a bit of help through this ordeal"). The shrinks opinion was to have a sleep study done for apnea. As luck would have it, the shrink also suffers from apnea, and had many of my symptoms himself! He also warned me about Klonopin and apnea.

The O2 sats can be confusing, as my hands are always ice cold. Just getting the oximeter to read is a challenge! The readings are probably incorrect. An ABG shows 88%, where 80 - 100% is normal for this particular test. The ABG is more accurate.

There were some other abnormalities found, which I'll list below just in case any of them stand out as odd to you:

- Positive ANA (no autoimmune disease found)
- Lyme (ELISA and Western Blot), negative
- Spiral CT, PFT (no embolism), PFT slightly abnormal
- MRI Brain - normal, no lesions
- CT of Brain - normal
- CT of Sinuses - deviated septum
- Stress/Echo/EKG - all abnormal, cath clear
- Optometrist - peramanent vision loss left eye
- Endo - elevated cortisol, but not cushings. No Pheo.
- Abnormal white counts (low lymph, elevated neutrophils)
- Mildly low TSH, variable
- Elevated calcium
- Low Potassium (3.4 on scale of 3.5 - 5.5)
- Low BUN (a kidney test), doc says superb kidney function
- Infectious disease - negative for lyme, mono, etc
- Rheumatology - negative, not lupus/connective tissue disease
- Overnight oximetry - normal (92% desaturation)
- Elevated CPK-MB, Normal Trop-T (cardiac enzymes)

Second opinion is in the works (January), by an independant cardiologist. Family doctor suggests going to UPMC Pittsburgh (I'm in the Pittsburgh area).


Merry Christmas!

-Ryan

[chcnme]

Hi Ryan!  Merry Christmas.  Very quickly because .....

I think Santa is upstairs :)

Wow - your history is very interesting; while there are some lab abnormalities that would warrant (with your symptoms) ruling other things out, it appears you've been worked up extensively and that many things HAVE been ruled out.  Was Urology ever consulted, or did anyone ever refer you to a urologist?

?? -- HR 35 is getting way down there (could be dangerous.)  I'm assuming you aren't running marathons.  If you aren't, I'm speechless on the HR of 30 to then periods of 150 with out of control BP (and doc saying "no concern.")  

I'm sure by now, after two years of this, you're at your wits end being worked up on so many fronts and being ultimately referred to a psychiatrist.  

You have some significant labs, too - well - I don't know how significant, but some abnormalities that would warrant the workups done so far  (and further workups if these labs remain abnormal.)  

How long has your TSH been coming back low?  I'm assuming with everything they have done so far, any possible thyroid disease was ruled out long ago, right ??  And your CKP - has anyone said why it's continued to be elevated?  

It just occurred to me, too - did your vision never return after the acute episode in the shop with the vision loss?  

What the heck might be going on, Ryan - it seems a mystery and all the more reason you should be continued to be worked up, referred, etc  (not someone saying "OK, this is anxiety, and that's all this is.")   No way.  Your cardiac issues alone warrant ... well - they warrant your being under the care of a great cardiac doc  (which right now, I'm not sure you have.)

You are young, too - which adds further to the mystery but is also all the reason to continue the work-up.

Yeah.. sleep apnea needs to be done, too (ruled out.)

Bottom line - I'm very glad to see you're going to get seen at UPMC. I think (no.. I know) you will be in far better hands there - the best.  

I'll be very interested to know how things go for you there. In the meantime, if your heart rate gets down to the mid 30s again or soars to 150 without exertion, or if your BP is cranking out with the upper number above 150 and the lower number above 100, call the doc.  If he doesn't tell you to come in and be seen  or doesn't tell you to go to the ER, just go to the ER anyhow, OK?  Better safe than sorry.

Today, have yourself a VERY Merry Christmas!  Happy New Year, too.  And do post back here if you get the chance on how you're doing, OK?  Best of luck!  

[chcnme]

one more thing  (I was re-reading your earlier notes).  Are you out of the work environment where it was suspected you were exposed to heavy metals?

[RCA 7591]

Hi chcnme,

I hope you Christmas was enjoyable! (mine was great).

Unfortunately, I am forced to work with heavy metals daily (generally, all day long). Amoung those would be: Lead, Chromium,
Arsenic, and Cadmium. I also work with solvents (MEK, carbon tet, benzene). These compounds are a necessary part of my work, but I've made some attempts to reduce physical exposure to them.

It was initially thought that one or more of the above had "destroyed" the nervous system in some way (highly probable, IMHO). Certainly, some of the lab findings could be explained from the exposure. Strangely enough, the lead level was only 3 (3-5 normal range).

Yesterday, I saw the first very significant improvement in over two years....I tried the Klonopin. Within one hour, almost every symptom vanished. In particular, the dizziness which I've had for several years (totally gone!). The SOB and tachycardia remain. I use snuff, and I plan to quit using it ASAP. This should help the blood pressure too.

With the Klonopin, my BP yesterday was 105/65. Obviously, the Klonopin is having some positive effects on the CNS.

That leaves two main symptoms that cannot be anxiety related: The shortness of breath, and the tachycardia. With any luck, UPMC doctors will find the answer as to why.

Best to you,

Ryan