What Tests Are Suggested

[bebe127]

I know that we are not allowed to give medical advice, but I would surely love some direction. Any input would be appreciated.

I plan on going into the dr. soon and I want to get all information on testing that I can get my hands on. When dx. in 2009 the EP told me that I "probably have POTS". That's where he left it. He wouldn't/couldn't treat me and couldn't refer me to someone that could. He never told me there were different types of POTS nor suggested any other testing. He told me to eat more salt and drink more water. Never put me on medication. Went in for a follow up and I explained all the symptoms I was having and he told me that he didn't know why I was experiencing all of them and that people live normal lives all the time with POTS. Also, saw another EP (a supposed specialist in POTS) who told me that I have a mild case because I don't faint. I proceeded to tell him all my symptoms to which he responded, "You shouldn't be feeling this way, it has nothing to do with POTS." Mind you, the symptoms I was exhibiting came directly from Dinet.org information packet that the original EP had given me at the hospital after my TTT. He suggested I see someone closer to home and to look into seeing a Psychologist.

Now, four years later I am questioning even if I, in fact, have POTS (although did test positive in a TTT back in 2009). I have finally gotten over (mostly) my dissatisfaction with doctors and am willing to start from square one again.

I am currently being treated by a GP that also treats other POTS patients. I do like him and I feel like he listens and tries to understand. He is treating me with BB's and Xanax which seem to work most of the time, but I still have issues that wax and wane. I do feel like I have improved over the last year, but not sure if it is due to meds, my resignation to feeling crappy all the time and learning to deal with it, or if it's a combination.

I would like to know whether I have any other issues like possible autoimmune issues. From what I've learned in my reading, I suspect Hyper POTS, possible MCAS, possible Grave's, possible Meneires, possible pheo tumor thing, and probably more if I really think about it. I want to find out what type of testing I might need to get done so I can suggest them to my dr. and hope that he doesn't look at me like a crazy person. I do understand that there are so many overlapping symptoms pertaining to various syndromes. I'm am just so confused, so ready to get a difinitive dx. and so so ready to get better treatment, if that is possible.

I would like to know what specific types of tests I can suggest to my dr. Thanks in advance.

[Guest Alex]

Bebe,

I can tell you what tests I had so far as my dr ruled out some of the things you have in mind:

.

-tons of blood work to check for thyroid issues, pituitary hormones, autoimmunity, adrenal tumors and hyper POTS (blood catecholamines), ACTH stimulation test (checking the function of your adrenal glands), fasting sugar, AM and PM cortisol....jeez, no wonder my dr thinks I am hypovolemic after all those blood tests

- chest X-rays, chest CT scan

- abdominal and pelvic CT scan and ultrasound

- pituitary and brain MRI (I had an elevated blood prolactin level and that can be caused by a pituitary tumor- thankfully it was ruled out)

- tilt table test (obviously)

- neurological exam

- will have a nerve conduction test on Wed (wish me luck)

- will have an EEG (no appt set yet)

- ECG's

- Holter monitor

- several stress tests

- echocardiogram

- urine metanephrines (for pheochromocytoma)

- 24 h urine sodium and potassium

When it comes to your particular concerns:

* for hyper POTS - tilt table test and blood catecholamines

* for MCAS there is a list of proposed criteria for diagnosing that (not sure if it's still valid, but it was in 2010 and I apologize for not having the details for the source of this info):

1. Episodic symptoms consistent with mast cell mediator release and affecting 2 or more organ systems, for example
a. Skin: urticaria, angioedema, flushing
b. Gastrointestinal: nausea, vomiting, diarrhea, abdominal cramping
c. Cardiovascular: hypotensive fainting or near fainting, tachycardia (rapid heart rate)
d. Respiratory: Wheezing
e. Naso-ocular: redness and swelling of the conjunctiva, itching, nasal stuffiness

2. A decrease in the freuency or severity or resolution of symptoms with antimediator therapy (H1 and H2 antihistamines, antileukotriene medications (Singulair, Zyflo), or mast cell stabilizers (cromolyn, ketotifen)

3. Evidence of an increase in a urinary or blood serum marker of mast cell activation: increase of tryptase level above baseline on 2 occasions or only once if the baseline level of tryptase is 15ng/ml or higher. This is the preferred method of indicating mast cell activation. Less specific markers are 24-hour urine with elevated level of histamine metabolite or prostaglandin metabolite, PGF2.

* for Grave's disease - blood work for thyroid hormones, CT scan and/or MRI of the thyroid, and there is also a test involving radioactive iodine (not familiar with it)

* for Meniere's disease - no clue

* for pheochromocytoma - blood catecholamines, 24 h urine metanephrines, CT scan of adrenal glands

Hang in there and best of luck as you try figuring things out.

Alex

[bebe127]

Thanks a bunch Alex! Will look into all the above

Be well!

[Hope]

For Meniere's, my ENT did blood work to see what kind of "old viruses" were lingering in my blood system that could cause it. (I had 4) He had me try to walk a straight line with my eyes shut (yeah right, I can't even do it with my eyes open!). He did a hearing test. He sent me for an ENG, and an MRI although I didn't have enough nerve to do the MRI until last fall when my neurologist sent me. At the time the ENT diagnosed me in the 90's, he put me on a very low-salt diet that got rid of the ringing and most of being off-balance, but now... I need salt! So I ring, and I am off balance but it beats passing out or feeling faint. I hope you get some answers. I think not knowing what your dealing with is the worst part of being sick! I'm still trying to find somebody to look at my autoimmune issues...sooner or later. I wish you well!

[bebe127]

Thanks Hope!

Sorry, I just saw this now as I was going through my old posts because I'm finally going to go in to see my GP. I find it interesting that bloodwork can reveal "old viruses lingering". I know that my daughter had EBV and bloodwork could reveal if it was active or not. I'm definately going to bring this up to the dr. I had MRSA back in 2000 and it took a few years to get rid of it. The dermatologist that I was seeing said that if the med cocktail she was giving me didn't work, she'd have to contact the CDC and have me get a PICC line for IV antibiotics. For the most part it went away, although I really can't remember if I was ever retested for it. I've had a few skin lesions over the last few years and it's always been in the back of my mind that I could still have issues with this.

As far as my ears ringing...it is most annoying! It is constant, every minute of every day, worse in the morning and in the evening. I think I've already said that I have to use subtitles now or there is no use watching tv (unless I turn it up so loud the neighbors could hear!). I don't think I have a balance problem, although I've never tried to walk a straight line with my eyes closed. Maybe my dr. will send me for a hearing test. I can't be on a high salt diet because my bp tends to raise at times (salt loading never really seemed to benefit me in terms of POTS). I do drink a gatorade now and again though. I'm going to ask if it might be my medication as well. Who knows?? I just want the ringing to stop. I think too that I grit my teeth because of the ringing (or maybe just all the stress from being ill) which of course causes me to have headaches, or at least, I'm sure contributes to them.

Anywho, thanks for the info!!

Be well,

Bebe