many diagnosis- but no genesis

[ppercy]

Hello,

Glad you're here first time finding you in over 5 years of online research.
Over the last 16 years I've been building up these exhaustion + symptoms.
Currently I'm experiencing double vision (2 years) and extreme exhaustion w/o supplements-- light sleeper waking every 2-3 hours (mostly due to external noises, yes we moved to a quieter community:) even on sleep supps. Bones hurt- yes I do bike ride to help that & be in shape :)

After many tests HMO ruled out many things.
Here's what they found:
Heart murmur (lifelong)
Low BP (except when on supplements for energy it's "normal")
Narcolepsy (missing 4th stage sleep)
Allergies to almost ALL prescriptions - so can't take anything but supplements
Fibromyalgia
CFS
Hyper-mobility

My history:
Born 6 weeks early due to mother Placentia previa (lost twin bro at 5 months preg)
Very clumsy- poor balance- hit head to bust open 4 times (ages 4, 6, 8, 11)
Hepatitis A- contracted at age 15 (79)
Been in a major car accident (88) where hit head and knocked into a 1 month stupor-- seem to not ever have fully recovered?
Divorced in 90-been through much counseling-- have a great life-- blessed and at peace
Dad died at age 38 (83) of cerebral aneurism to a main artery in back of neck/ skull
---- my MRI shows no sign of brain issues??
Hysterectomy ('10) due to 2 very large fibroid tumors and many small

ISSUES
HMO only focuses on narcolepsy...yes, but why are symptoms building over the last 16 years only (5 years ago I was working part time on a project when I finished I "crashed" my exhaustion symptom hit me so much so I coud'nt fully wake up and was/ am in a "stupor"?
I've filed a grievance with them due to new doc (we moved) not pushing through a referral for another sleep study after having low BP when having hysterectomy...she was very abrasive and didn't to help me look into the genesis of my health issues.
I don't truly fall asleep randomly--it's somewhat controllable more like a zoning/ spacing out (that's been as far back as I can remember being called "space case" in school & home).
I would like to know your thoughts on if I may have weakening of an artery?
Could there be something physiologically happening in my brain or spinal system?
Are there other kinds of scans or MRI or (?) I can ask for?
Who at an HMO do I go to besides the neurologists?
Or if he's the best to help, WHAT do I need to ask him and advocate for?
If I take melatonin for sleep I am in a worse stupor 2 days later and just want to sleep-- why?

WHAT HELPS:
B12 (3K MCG 3X A DAY)
all B 125's
THYROID & HYPOLTHALAMUS (BOVINE GLANDULARS)
L-TYROSINE
CORTISOL
C, E
"BRAINSTORM" GINGKO- BACOPA
NIGHT- VALERIAN, GABA, ASHWAGHANDA
ADRENAL SUPPLEMENT
DLPA
ADAPTOGENS
LICORICE ROOT
PROTEIN POWDER DRINK(37MG)
CARNITINE CREATINE
GREEN DRINK (SPIURLINA, ETC)
PROGERSTERONE CREAM (1/8 tsp- 2x day)

Yes, I take vacations from it. If I go longer than 2 days off supps, I crash:/ When I had to go off for a week before surgery, I was bed ridden - up only 4-6 hours.

Anything you can give insight to would be much appreciated!

Thank you very much!

[Dasky]

What is it that the Neurologist mainly specialize in?  I see a Neuromuscular specialist to rule out things in her area, an MRI of my cervical/thoracic spine revealed bulging disc, however there was concerns of the MRI of the brain that suggests MS.  So, she recommended that I see a "Nueropsychologist" to pinpoint what part of my brain is not functioning properly. And last I am to see a "NeuroMS" physician to confirm if I in fact have MS.

So different neurologist have extended education in different areas, I would suggest due to what appears as trauma possibly to your head I would suggest a second opinion in the areas of Neuropsychologist and a second set of eyes and maybe even a new MRI in a hospital in case you did'nt use one previous. Good luck and GOD Bless I understand what you are experiencing, going thru a lot as well. I too am clumsy, poor balance, poor sleep, and extremely fatiqued, etc.

[ppercy]

Oh...and yes, I've been tested by HMO for everything inlcuding thyroid.
I showed back in may 2010 low protein level (off all supplements for a week) and creatine low end of "standards" on electrolytes...although my RDW red blood cell was 15.3... MPV (7.3) & RBC (4.2) we're both at the lowest acceptable level..

[ppercy]

Hello!

Yes thanks for the  advise & questions which I hope to answer clearly:)

I've ALWAYS been a light sleeper.
There's been no trauma or emotional stimulants to cause this; in my childhood which is when at age 3 I started realizing I am a vivid dreamer and light sleeper.
I can wak up to hearing "ants crawling on the walls", so to speak.
My skin and eyes and head are very sensitive.
I fall asleep easy and dream on spot and wake up dreaming.

Yes, I take all B's in daytime only.
The only things I take in evening are B6, St Johns and a calming vitamin
What I take at bedtime is Valerian, Ashwagndha, GABA & St John's & Progesterone cream.

Since I'm going to see the Neuro on the 3rd, I'm off meds from night of the 26th to the 3rd (UGH!). I feel very zombi-ish (like I usually do when on supplement break).
Yes, I've researched ALL the supplements I take and are aware of their side affects.
I have taken up to 3 week breaks and suffer the whole time.
I will then gradually add back in 1 to 3 at a time, finding that my brain/body responds best to the totality of the cocktail of what I have listed above.

I have consulted with a naturopathic Doc about my symptoms.
This is why I'm on the progesterone and thyroid glandular and cortisol.
It's helped to, as you say, "patch up the problem" but not cure it.

Yes, the HMO has also only supported that I figure out the narcolepsy(?) issue to see if that's the rot cause. Now I'm not sure what REALLY causes the narcolepsy.
As I asked in my first inquiry:
I would like to know your thoughts on if I may have weakening of an artery?
Could there be something physiologically happening in my brain or spinal system?
Are there other kinds of scans or MRI or (?) I can ask for?

Anyone in the med field have suggestions for what I can ask for when I see the HMO neuro/ sleep specialist on the 3rd?
Should I ask for a 2nd opinion and if in Orange County/ LA County, CA-- who has a great sleep disorder lab or a medical clinic that's willing to take someone like me (without much $) help figure this out?
Who at an HMO should I ask to see besides the neurologists?
Or if he's the best to help, WHAT do I need to ask him and advocate for?

Thanks for all your help!!!
ppercy

[saywhydoi]

seems to be quite a lot going on here.

First thing that struck me was that with the lack of sleep, it's little wonder that you're suffering from narcolepsy and exhaustion. I wonder if it is CFS or just tiredness from lack of sleep. I see you're taking valerian, GABA and adaptogens and adernal support to help you with the sleep issues, which is good - but even better would be getting to the root of the problem. WHY are you unable to sleep for more than 2-3 hours at a time, especially if you no longer live in a noisy area. Why are you sleeping so lightly in the first place? Has it always been like this?  Oh I would also say to avoid taking your B vitamins at night before bed because some of them can keep us awake. Better to take them in the morning.

Without proper sleep, our time to regenerate and heal ourselves, all sorts of other things like forgetfulness, clumsiness, a painful body (due to inability to regenerate and heal overnight) etc also occur.

I feel like if we sort out the sleep, we'll be sorting out a lot of other things.

Also, have you been diagnosed with hypothyroidism? That can also cause exhaustion - and I see you're taking thyroid glandular and tyrosine which are aimed to help with hypothyroidism. Again, it would be helpful to get to the root of the problem there rather than only supplement to patch up the problem. If you havent done so yet - a thyroid blood test would be useful.

[bbxx]

You are taking a lot of things, and natural does not = safe. Everything has side effects. Everything. I would research every single thing you are on and find the side effects. As to the other things, I am really sorry I cant help you. I hope you get the help you need.