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Evaluating Possible Dysautonomia...

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Evaluating Possible Dysautonomia...

Posted by Sue [9021.2765] on April 25, 2008 at 02:28:26:

Dear Dr Stoll,

I am writing to you seeking for some practical advice, and I hope you can help me. I have outlined the problems as detailed as I can, and have included all drug (brand names in parenthesis), in case of cross-country differences.


Hypertension, Tachycardia: I am now 22 years old, and 2 years ago, during a regular medical check-up, the gynaecologist found that I had a resting blood pressure of 140/90. Was a regular blood donor for 3 years and was on a 6-month holiday, so the BP-spike was an anomaly.

She subsequently refered me a to physician-neurologist. An ABPM was done, and the highest reading of BP was 158/128. Tachycardia (and palpitation) was another feature on the ABPM (with HR as high as 160, not-under-strenous-activity). Note: Did not have any feelings of anxiousness/panic during the tachycardia.


I have very minimal family history of HTN (parents have slightly elevated bp, after age 45), am active, have a BMI of 21, and borderline Cholesterol. Have been through the mill for ALL tests to check for secondary HTN, and the only abnormality is high (sitting upright for half an hour) renin at 17.0 (Range: 0.2-2.8), although Aldosterone was normal. Doppler U/S and Renal MRA showed no Renal Artery Stenosis.

Am now on Amlodipine (Norvasc) 10 mg, Valsartan (Diovan) 160 mg, Propranolol (Inderal) 80 mg, all once daily.


Doctors are ambivalent about diagnosis: Some belief it is essential HTN, while some belief we just havent hit the nail on the head.


Tremors: A few months after that, I developed severe tremors of my hands, and when fatigued, of the legs as well, to the extent I cannot walk. I cannot write properly unless with medication (I am on Propranolol, 80 mg, once daily) as my hands will tremble and I have to grip my pen tightly in order to maintain penmanship, as my hands also feel weak (only confined to fine motor movement like writing, using a tweezer etc). My eyelids and lips also occasionally tremble (thyroid function is normal). There are also occasions every day when individual appendages and digits twitch for no reason (kinda like a sudden jerk?).



Problems emptying bladder: 4 months ago, I started having problems with my bladder, where I had to visit the bathroom a few times before I 'finished'. I also had trouble initiaitng the urine flow (even with a full bladder), and there was subsequent dribbling. It became troublesome when I kept waking up at night. I initially thought I was having a urinary tract infection, but urinalysis showed no bacteria. Two pre+post-micturition Ultrasounds were done; the first showed incomplete emptying (bladder at that time was very full), while the second (a bladder which was quite empty) showed complete emptying.

I also found that during the peak of urination activity (when I was visiting the bathroom every half and hour), I also have a lot of saliva pooling at the bottom of my mouth, although the rest of my mouth is dry. I have to keep consciously telling myself to swallow all the saliva every 5 minutes or so, otheriwse, there will be drooling.


Haywire Blood Pressure, when ill: A month ago, I was admitted for an acute nasopharyngitis+otitis media+severe migraine. During hospitalisation, I was given Oxymethazoline Hydrochloride (Afrin) to clear the nasal congestion and IV-Ceftriaxone (Rocephin). Early the next morning, my BP dropped to a surprising 70/40 (without anti-Hypertensives). I was not purging, or vomiting, and had maintained normal fluid intake. The BP stubbornly refused to climb despite the administration of IV-fluids, and I remained in hospital for 4 days. (Note: Doctor ordered me to off all anti-Hypertensives, and one week later, my BP went up to (the highest) 177/135))



Pupillary Reflex: Upon discharge, I collapsed at home, which the doctor diagnosed as vasovagal. Upon examination, she found that my pupils were strangely more dilated than normal (to penlight and accommodation), in absence of pain. I was refered to a Opthalmologist, who found no problems, using his "super torchlight" (he didn't use a penlgiht). The first doctor thinks there is still cause for concern, because my pupils used to constrict properly (to penlight and accommodation), and she has been my physician for the past 3 years.

I also have a problem reading for a long time or when the print is small. My vision of the text will blur out, but my peripheral vision remains intact. If I am reading very tiny prints in a book, I have problem reading from line to line, as my vision will 'jump' and I end up missing a line, or going back upwards.



Differential Diagnosis: She has put a few things into the basket of possible differential diagnosis, and I am wiritng to you to ask if you have encountered anything even remotely similar to my case. Among the condition my physician suspects (subject to further discussion) are:

1) Idiopathic Pandysautonomia
2) Idiopathic Dysautonomia
3) (Purely Autonomic) CIDP


My physician admits she isn't very familiar with these conditions as she has yet to see a full-blown case in practise. And unfortunately, Malaysia has very few neurologists and limited machines/techniques etc to fully diagnose these conditions..


She suspects my immune system is always active. I have been 'plagued' with recurrent acute tonsilitis for years (leading to the eventual removal after going into a near-Quinsy emergency in 2006) and now without my tonsils I get other infections of the upper respiratory tract; have also had recurrent allergies which attack my eyes, ears, nose, skin since young. She thinks it might be worthwhile to do a lumbar puncture to look for any abnormalities and the presence of oligoclonal bands.


One note of interest: I had measles at the age of 9 months (to which the pediatrician said I did not need the MMR vaccination, since I had measles), mumps at 14 years old, and received my Rubella-vaccination at the age of (I think) 15. I read somewhere that the measles virus can remain dormant in the body for years and come back and wreck havoc years later. Is that true?



Pressing Question(s):


1) Is there a reason for us to continue looking for an answer to my problems, and if yes, are we along the right path? I don't believe I am stressed out with life and neither does my physician or family, but is stress a possible factor in all the above symptoms? I am open to the possibility =)


2) If we are along the right path, where can I find a doctor (and what kind of doctor) to help me? I would appreciate doctors nearest to me (Malaysia)...


3) What reading materials do you suggest I invest in, if applicable? I don't mind thumbing through purely-medical textbooks, as my physician is always willing to help explain if I have difficulty understanding.


***

I know this is a very long and detailed email, and I understand if you cannot/will not reply to this. I thought I'd just give it a shot.

I thank you for your time, and hope to hear from you.




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Re: Evaluating Possible Dysautonomia...* (correction) *

Posted by Ron [5412.2287] on April 25, 2008 at 05:15:41:

In Reply to: Evaluating Possible Dysautonomia... posted by Sue [9021.2765] on April 25, 2008 at 02:28:26:

Hi Sue,

Just a few questions.. by a layman.

Do you have actual numbers for all your thyroid
components... (especially the T3 and TSH numbers)
There is a condition called *SUB*-Clinical Hypothyroidism..

Another possibility is Lyme Disease, which can mimic
many conditions. Were you bitten by a tick before all this began?

Your borderline Cholesterol may not be what you
should be worried about... How is your Triglyceride level?
Is your diet high in refined carbs?

Do you still have your ovaries?


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Re: Evaluating Possible Dysautonomia...

Posted by Sally [6687.3322] on April 25, 2008 at 08:32:54:

In Reply to: Evaluating Possible Dysautonomia... posted by Sue [9021.2765] on April 25, 2008 at 02:28:26:

Whew, Sue, what a remarkable history. I don't know why Ron suggested hypothyroidism, I would think hyper since your metabolism seems revved up so we will be very interested in what Walt says. I'm sure "skilled relaxation" will be something you want to try no matter what the diagnosis. Put SR in the search text.


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Re: Evaluating Possible Dysautonomia...

Posted by Corinne [274.4573] on April 25, 2008 at 10:37:26:

In Reply to: Evaluating Possible Dysautonomia... posted by Sue [9021.2765] on April 25, 2008 at 02:28:26:

There is a lot of info on the "Stop the Thyroid Madness website, on the forums are a lot of people very knowledgeable about Thyroid and Adrenals. Aldosterone is an adrenal hormone. here is the website, worth looking into:
http://www.realthyroidhelp.com/


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Re: Evaluating Possible Dysautonomia...

Posted by Jan DeCourtney, CMT (Happygal) [7244.4558] on April 25, 2008 at 11:06:29:

In Reply to: Evaluating Possible Dysautonomia... posted by Sue [9021.2765] on April 25, 2008 at 02:28:26:

Hi Sue,

Not being a doctor, I do not understand everything you wrote about. However I have a couple of resources for you.

First, have you read the dysautonomia archives on this website?

Second, one of the best thing to help nervous system problems is Skilled Relaxation (SR). You can read on this website an article on the home page, and also the glossary and archives on that topic.

Third, the book I wrote with Dr. Stoll explains a lot about how to improve health, and works especially well for dysautonomia -- that's the condition I had. But even if what you have turns out to not be dysautonomia, this book will guide you to help your health very effectively. Our book is called Recapture Your Health and we do mail books overseas. It's easy to read and understand for the layperson. Link below.

Best wishes,
Jan



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Re: Evaluating Possible Dysautonomia...WORST CASE EVER! archive

Posted by Walt Stoll [93.3349] on April 26, 2008 at 08:53:21:

In Reply to: Evaluating Possible Dysautonomia... posted by Sue [9021.2765] on April 25, 2008 at 02:28:26:

Hi, Sue.

Excellent summary of your HOPI (history of your present illness)!

Adrenal or renal endocrinological dysfunction comes to mind but this is VERY hard to diagnose even in a medical school setting. That is where I would suggest you go next. I am unfamiliar with the educational quality of the medical system in Malaysia. You may have to come to the USA for the medical school potential but this is so serious you do not have any choice. The way it works here is that you would have to have all your medical records in hand and call the medical school of your choice to ask them how to get into the endocrinology clinic que.

You would then go and spend the day getting into their system and, in my opinion, they would see your case as a diagnostic challenge and a teaching example for the whole medical school's students interns and residents!

I think that your docs are right in that no one has yet "hit the nail on the head" but this is SO unusual and potentially fatal that SOMEONE should be able to finally diagnose you before you reach end organ collapse.

Sorry to be so scary in my assessment but this is the worst case of idiopathic dysautonomia I have ever heard of and have NEVER seen in my practice.

Jan is correct in that SR might help while you are dealing with the above but, this is far beyond that resolving this. It cannot hurt, though and just may give you more time to "find the nail and hit it on the head".

Surely wish I could help you more but this is beyond me--and probably beyond 99.9% of the physicians in this country. I do not know about Malaysia.

Please keep us up on how you fare. FANTASTIC!

Walt


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Re: Evaluating Possible Dysautonomia...

Posted by Sue [6991.2765] on April 30, 2008 at 22:08:51:

In Reply to: Evaluating Possible Dysautonomia... posted by Sue [9021.2765] on April 25, 2008 at 02:28:26:

Hi Everyone,

Thank you for your replies. It is much appreciated =)

Ron, I have done my thyroid function tests, repeatedly...The numbers are below (most recent):

TSH: 0.76 (Range: 0.49-4067 mIU/L)
Free T4: 11.33 (R: 9.14-23.81 pmol/L)
Free T3: 2.71 (R: 2.23-5.35 pmol/L)

Have been tested for all endocrinological problems (Conn's, Pheochromocytoma, Hyperthyroid, Cushings, Pituitary Porblems (CT Scan normal), Takayasu's Arteritis), especially testing of (24-urine) Epinephrine, Norepinephrine, Metanephrine, Normetanephrine and Dopamine. All within normal limits.

I thought this meant my Sympathetic Nervous System (SNS) is normal seeing that my Norepinephrine levels, a SNS neurotrasmitter is normal. My neurologist says this might not be the case as the 24-urine measures pure Norepinephrine secreted, and not HOW it is utilised as a neurotransmittor.

My heart has also been checked, and the only problem is a trivial mitral regurgitation which the cardiologist said does not harm me.

Re "Adrenal or renal endocrinological dysfunction" as mentioned by Walt, I have also undergone repeated Renal MRA and MRI, in spaces of 6 months or so, and they all come back normal, save for a suspiciously 'bulky' adrenal (according to the endocrinologist). The Radiologist reported it as perfectly normal.

So basically, I look healthy as a cow! My blood tests and scans look great, but I am still having problems. I even suggested that maybe it is 'in my mind' to my neurologist, but she said it is not possible to 'make' my blood pressure go swinging up and down like that, and there is no way I can 'trick' my pupils into being funny.

Jan, thanks for the suggestion on SR. I will read up on it and put a note out if I need further help.

By the way, Walt, I am already being treated like a 'lab rat' here in the hospital. The medical students look at me like I am some peculiar creature =(. Am seeing a allergist-immunologist next week to see what he thinks about this possible dysautonomia and the other conditions (since my neurologist says they're autoimmune)...

Will keep you posted.

Thanks once again everyone for helping me out! =)


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Re: Evaluating Possible Dysautonomia...* (correction) *

Posted by Sue [11727.2765] on May 01, 2008 at 04:21:43:

In Reply to: Re: Evaluating Possible Dysautonomia...* (correction) * posted by Ron [5412.2287] on April 25, 2008 at 05:15:41:

Ron,

Apologies for missing some of your questions.

Yes, I still have my ovaries (Thank God!). I can't be having hypothyroidisim...If anything, I have HYPER (tremors, sweating, hypertension etc)...But that has been ruled out...=)

My Triglyceride levels are (now, after medication), somewhere around 0.64-0.88 (Range: Normal is classified as < 1.70).

My diet consists of mostly vegetables (cooked), and I limit my meat intake (I try and stay off red meat, especially). As for carbs, I take mostly wholemeal/wheat bread. I also limit my sugar intake, although I do love coffee and chocolate!

My doctor started me on statin (cholesterol-lowering meds) because she wanted to eliminate as many risk factors that contribute to stuff like stroke, aneurysms etc, seeing I have pretty high blood pressure. Morover, one year of very strict diet of nearly 99% vegetarian and plenty of oats didn't help much.

Hope that answers your question. Thanks...


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Re: Evaluating Possible Dysautonomia...

Posted by Walt Stoll [93.3349] on May 01, 2008 at 07:15:42:

In Reply to: Re: Evaluating Possible Dysautonomia... posted by Sue [6991.2765] on April 30, 2008 at 22:08:51:

Thanks, Sue.

SR will go directly to the core reasons for something like this without any possibility for harm. This website contains many references about the proof of the effectiveness of this approach as does our 2 books.

Walt


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Re: Evaluating Possible Dysautonomia...* (correction) *

Posted by Jan DeCourtney, CMT (Happygal) [1672.4558] on May 01, 2008 at 07:55:53:

In Reply to: Re: Evaluating Possible Dysautonomia...* (correction) * posted by Sue [11727.2765] on May 01, 2008 at 04:21:43:

Hi Sue,

Consider going off coffee and chocolate to see if that will help your symptoms. Sometimes small things can really affect people. For more information on diet, see "Recapture Your Health."

Also I would like to tell you that I'm slowly writing a book about dysautonomia with Walt. Dysautonomia is what I had but definitely not as severe as you. It will likely take several years for me to write and publish it. You can keep informed by subscribing to our e-newsletter or checking our websites.

Best wishes,
Jan



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