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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.
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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.