Blood oxygen levels

[Slinky]

I had one on Dec 12. It came back negative.
Honestly my GP seem to have completely lost interest. I think he thinks its all in my head. It reminds me of the way he acted before I got diagnosed and every time I complained about sleeping he said I needed to go see a shrink.

Well, you know what. No doctor ever went quite that far in suggesting I see a psychiatrist but after that whiplash, my family doctor dying just as my Crohn's disease remission ended and no new doctor who didnt' know me believed after that long a remission that I had really had Crohn's, etc., etc. I did just that!!

Just to show the sheister's up. I had the full neuropsychological testing bit (since I'd had the whiplash it justified the neuropsych testing). Yep, the whole 9 yards, the neuro testing AND the psych testing, the good ole MMPI-II. (I was surprised they didn't pull out good ole Raushcark or whateve his name is, the old ink blot test)!

Guess what, doc's?? I had some NEURO problems, duh, but scarey as it sounds, I tested in the "normal" range (if there is such a thing) on the psych part. No hypochondriasis, depression, etc. etc. (I did score a "little" high on the agression scale I expected to score higher on that one given the uncharitable opinion I had of the medical profession).

That neuropsych testing plus Mayo Clinic verifying the return of the Crohn's put egg on the local doc's faces. At which time I ditched them after having that satisfaction and did find a GOOD family doctor!!

One thing the testing psychologist did tell me tho was that if the REASON for the neuropsych testing was because of some PHYSICAL problems the referral should specify its for a physical problem that sometimes has a psychological component. The MMPI-II is somewhat weak on hypochondriasis and tends to overscore any physical complaints mentioned. At least that's what he explained to me. He also felt the Mayo re-Dx helped to alleviate the overemphasis for hypochondriasis. At least that's the best I remember it.

The neuro part of the testing is really interesting! And challenging!

[vdol52]

That made my blood boil, (figuratively), when I read about the ER doc saying that Sleep Apnea is not serious, it just makes you sleepy. Unfortunately there are more uninformed Doctors than we know.
There is a marked difference in your color and skin appearance and you look just like me with the droopy eyes.

Just a thought. Have you had or considered LAUP surgery or the Pillar Procedure. I have looked into that for myself and found that I have what is called a "long soft palette". I went to the Mayo clinic recently to have my sinuses checked and they were clear. I talked to the Doctor there about the LAUP and Pillar Procedure. He told me what I already know, that it is very painful and the LAUP doesn't always last more that 6 months to 1 year.

I'd be willing to endure the pain if I thought I would feel better and I'd be willing to have the procedure repeated if I thought it would help.
Right now I feel like I have half a life.

If anyone has had success with either the LAUP, Pillar Procedure or Somnoplasty please let me know and what were the results and how long has it lasted. Some people also use a dental device that pulls the lower jaw forward. I found a "sleep Dentist that did a consultation for "free", but I am not a candidate for that either.


Jeff, I wish you the best.
Victoria

[jskinner]

James, you have to get another GP, no question!

Absolutely agreed. Unfortunately here in Canada finding a GP thats taking on new patients is no easy task.

When's the last time you saw... a neurologist?

I saw a neurologist on Tuesday about the right side numbness. This problem started two weeks before I started on CPAP (June 15). I have no doubt that its apnea related since I felt extremely ill at the time from untreated apnea but no doctor I have seen since believes that apnea could cause this.

What about an allergist

Yep saw my allergist on Dec 5 a few weeks after the nasal problem was getting really bad.

Just a thought. Have you had or considered LAUP surgery or the Pillar Procedure. I have looked into that for myself and found that I have what is called a "long soft palette".

Yes I have considered LAUP. The first ENT that I saw recommended it. I did a lot of research on it after that and found that many people regretted the procedure and often it didn't help. Like you I would do it if I thought it was going to help. The worst part is that I am considering getting it down now just out of desperation. I really would like a team a qualified specialist make that decision but it seems like I end up just waiting for appointments with nothing much ever happening.

[Julie]

Hi, have you called the College of Physicians in T.O? They should have a list of who's taking new pts there, and if not, maybe consider just biting a bullet and going into town (stay with a friend?) for a couple of days so you can just go to the Toronto Hosp. (or other of your choice) and be once and for all evaluated by a team (the orig. one will call in others if he's got half a brain), and you'll have a much better shot at a comprehensive approach than what you seem to be doing now. Maybe ask (demand) your locals to refer you in. PS - I'm now in NS, but worked at 3-4 of the biggest teaching hosps in T.O. for years til we moved here 10 yrs ago... aren't you from here too?

[jskinner]

Still haven't had a super bad night since I started monitoring. Continue to have small desaturations. Here is last nights info:

http://james.istop.com/apnea/reports/SpO2March24.pdf

What should ones normal heart rate be during the night? Mine is usually around 60 when I go sleep. I've peaked every night to around 100.

[Snoredog]

Still haven't had a super bad night since I started monitoring. Continue to have small desaturations. Here is last nights info:

http://james.istop.com/apnea/reports/SpO2March24.pdf

What should ones normal heart rate be during the night? Mine is usually around 60 when I go sleep. I've peaked every night to around 100.

That is a pretty good report, what MODEL of SPO monitor is that?

It is the lack of oxygen that causes your pulse rate to increase. Brain tells the heart it is not getting enough oxygenated blood, sends the signal down to the heart to increase the heart rate in the hopes it will increase blood destined to the brain.

IF you are having Right-side numbness, start taking a 81mg aspirin every day (I take a 325mg Ecotrin). An Aspirin daily works like Plavix and keeps your blood from clotting, cause of most strokes.

Man it sounds like you are headed down the same path as I was before my first stroke and I was under the care of a Neurologist. That right sided numbness can be from a TIA (Transient Ischemic Attack, precurser to a stroke). Other signs can be aching pains in your left arm. Know if you get any tingling or numbness in your lips, go straight to the ER, screw your GP while he fiddle farts around, save your life first. You don't have to have all the signs of a TIA to have a stroke. That right sided numbness is your body telling you something is seriously wrong. Drink lots of pure water, bottled like Aquafina is preferred.

Trust me, you don't want to have a stroke on your left side (left side of brain impacts function on right side of body). So if numbness is now on right side, it means it is impacting the left side of your brain. Left side of brain controls cognitive thinking, breathing, talking, walking etc. Left sided strokes are really bad news survival wise as compared to those on the right side. If you are having numbness on the right side that means it is impacting the left side of the brain, not good (daily aspirin man, that stuff works).

[Julie]

Snoredog, I'd be very careful about prescribing for JS. ASA is a miracle Rx alright, but given to the wrong person for the wrong problem can be devastating. For instance, do you know what a subarachnoid hemorrhage is? It will let you know by coming on with the most horrible headache of your life, and if you take ASA, you'll be making the resulting stroke 10 x worse because it won't allow the hemorrhage into your brain to clot when it needs to, and even without ASA it can be much, much worse than a 'regular' stroke that may leave you with transient or even permanent damage of one kind or another. Be supportive, but be careful about 'prescribing' (I know you mean well, and we're all frustrated wanting to help here).

[Guest]

Snoredog, I'd be very careful about prescribing for JS. ASA is a miracle Rx alright, but given to the wrong person for the wrong problem can be devastating. For instance, do you know what a subarachnoid hemorrhage is? It will let you know by coming on with the most horrible headache of your life, and if you take ASA, you'll be making the resulting stroke 10 x worse because it won't allow the hemorrhage into your brain to clot when it needs to, and even without ASA it can be much, much worse than a 'regular' stroke that may leave you with transient or even permanent damage of one kind or another. Be supportive, but be careful about 'prescribing' (I know you mean well, and we're all frustrated wanting to help here).

I'm not prescribing anything, I'm letting him know what he needs to do to avoid having a stroke cause his quack doctor sure in the hell isn't. You don't have to tell me about stroke lady, I've had 2 already. How many have you had? Facts are there is a 20% chance a stroke will be hemorrhage type and 80% it will be from a clot. You sound like my damn neuro that let me stroke out while under their care for 6 months by doing absolutely nothing.

[jskinner]

That is a pretty good report, what MODEL of SPO monitor is that?

It's the SPO Medical PulseOx 7500

[kteague]

James,

I'm so daggone angry on your behalf I could spit! Desperate times call for desperate measures...

Do you have any contacts at local TV stations that would feature your before and after pictures and a summary of your medical history in their medical segment under some catchy subject like "Mystery Illnesses"? Include an link to a blog where hopefully some wise doctor will post.

Or buy a large space in a local paper and print your pictures with a plea, "What's wrong with me, Doc?"

Or print your pics on a sandwichboard with words "Can any doctor diagnose me?" and parade in front the best medical facility around - after having called all the local news stations. Have your parents parade with you with signs that say "Can you help my son?"

Or if all else fails, with the media there, handcuff yourself to something at that medical facility. When they take you in for trespassing, maybe the jailhouse doc will have a clue. Or you may get that suggested pysch eval!

Am I kidding? Maybe - just a little. But I am serious about you may have to think out-of-the-box to expedite getting some REAL help. Pick the doctor of your choice - the best of the best - then target them. Send them your pictures with your story and plea for help. What have you got to lose?

If I was there I'd don a sandwichboard myself. I'd say there's no shortage of folks here who would gladly do the same. Keep us informed of your progress.
Kathy

[Offerocker]

James,
Your current picture looks like the face of a untreated person with Parkinson's - droopy face, lack of expression, etc. I cannot imagine how you must feel.
I've been away from the forum for awhile; am so surprised and sorry that this problem is getting worse.
I'm inclined to agree with Kathy on this!

[kteague]

James,

Something about your picture kept nagging in the back of my mind, just couldn't put my finger on it. Offerocker's mention of your lack of expression prodded it out of hiding.

Many years ago when I used to prepare inservice training materials for home care providers, I remember seeing the symptoms of depression, lethargy, and flat affect (expressionless) being listed as signs of hypothyroidism. Candida is thought to interfere with thyroid function and even to cause hypothyroidism. Not to muddy the waters, but hypothyroid disordered breathing is sometimes mistaken as sleep apnea. (Been reading on PubMed but haven't figured out how to do the tiny url and didn't want to cause this thread to spread out.)

I tried to look back over prior posts and maybe it's all been covered and I missed it, but with the mouth issues you've had, has your thyroid been thoroughly checked out? If this is redundant or presumtuous, I apologize.

Kathy

[SpookyFodder]

I wish I had a camera. We could of the separated at birth ilk. I feel your pain at your experience with your doctors. After having a heart attack at 35 and complaining of extreme exhaustion for almost 13 years I still get the pat on the forehead and treated like a wackadoo. I have a couple of questions for you. Are the bags under your eyes most severe when you first wake up? I look like a racoon first thing in the morning. Its a little embarrassing. Do the dark rings under the eyes get worse when you exert yourself? Does anyone have any idea why that would happen?

[Snoredog]

I had one on Dec 12. It came back negative.
Honestly my GP seem to have completely lost interest. I think he thinks its all in my head. It reminds me of the way he acted before I got diagnosed and every time I complained about sleeping he said I needed to go see a shrink.

Well, you know what. No doctor ever went quite that far in suggesting I see a psychiatrist but after that whiplash, my family doctor dying just as my Crohn's disease remission ended and no new doctor who didnt' know me believed after that long a remission that I had really had Crohn's, etc., etc. I did just that!!

Just to show the sheister's up. I had the full neuropsychological testing bit (since I'd had the whiplash it justified the neuropsych testing). Yep, the whole 9 yards, the neuro testing AND the psych testing, the good ole MMPI-II. (I was surprised they didn't pull out good ole Raushcark or whateve his name is, the old ink blot test)!

Guess what, doc's?? I had some NEURO problems, duh, but scarey as it sounds, I tested in the "normal" range (if there is such a thing) on the psych part. No hypochondriasis, depression, etc. etc. (I did score a "little" high on the agression scale I expected to score higher on that one given the uncharitable opinion I had of the medical profession).

That neuropsych testing plus Mayo Clinic verifying the return of the Crohn's put egg on the local doc's faces. At which time I ditched them after having that satisfaction and did find a GOOD family doctor!!

One thing the testing psychologist did tell me tho was that if the REASON for the neuropsych testing was because of some PHYSICAL problems the referral should specify its for a physical problem that sometimes has a psychological component. The MMPI-II is somewhat weak on hypochondriasis and tends to overscore any physical complaints mentioned. At least that's what he explained to me. He also felt the Mayo re-Dx helped to alleviate the overemphasis for hypochondriasis. At least that's the best I remember it.

The neuro part of the testing is really interesting! And challenging!

I would have asked your GP for a referral to a good Family doctor

[Slinky]

Hey, as I mentioned I "was" doctor shopping for a GOOD family doctor or general practitioner since mine had died. THAT was an experience! Doctors that deliberately overbook and keep their patients cooling their heels in waiting and exam rooms, my introduction to time-based billing for office calls, doctors who didn't know HOW to listen to a patient, who didn't know HOW to question their patients, who insisted on your full medical records history then NEVER EVEN LOOKED AT THEM, doctors who felt each test ordered was coming out of their pocket, doctors who not only didn't trust their own instincts about a symptom or symptoms but also didn't HAVE any instincts, who relied solely on test results despite conflicting symptoms, etc., etc., etc.; in short a whole lot of educated idiots and very few GOOD "DOCTORS". I even encountered one doctor who when I asked WHY he was ordering a particular test, what it might tell us, actually told me that it was NOT NECESSARY from me to know, it was only necessary to know that HE, the DOCTOR, felt it was necessary!!!!

I happen to be a BELIEVER that a GOOD family doctor or general practitioner is THE MOST valuable asset to your medical "team". The "team" being, at least, you and the family/general practitioner. The specialists, in my opinion, are just "peripheral devices".