Trying To Leave No Stone Unturned...

[socksrule]

For seven years, I have been going to doctors, who all look at me and are not really sure what's wrong with me. I then get tested for various things and those turn up mostly normal/negative. I've seen plenty of cardiologists and endocronogists and currently seeing my first neurologist. One doctor will say I have POTS or [insert other illness] and the next will say no. So as the title says, I'm trying to leave no stone unturned, which is how I ended up here. Below is the list of symptoms and short list of tests I have had done. I was just curious if anyone has had similar experiences/symptoms or can suggest what other type of doctor I could go to. I feel like I'm at a dead end and I feel like I've basically exhausted most options.

Symptoms:

Biggest Issue: Fatigue. I get extremely tired within a 10-15 min period and need to lie down, which lasts between 30-60mins sometimes longer. Sometimes I feel refeshed when I wake up sometimes I don't. This mostly occurs at 10am and 1:30pm (so after breakfast and lunch, but not dinner). I usually also have a headache and I can feel my heart pound. This is worse when I'm stress (I'm a graduate student), but this occurs to a lesser degree when I'm not stressed. Sometimes during this period I will just be fatigued, but can still function, so this causes a difficulty in concernrating/mental fog effect.The fatigue is usually a bit better if I'm engaged and talking to someone, but I still usually end up having to go lie down.

Other Issues: frequent urination (I can't make it through an 1hr15min class without going to the bathroom, and I usually go once in the middle of the night), I sometimes feel nauseous when I wake up, but after drinking a glass of milk I feel better, Scoliosis, I'm always cold, sentitive to the heat, I see visual snow (I think that's the term, if I look at a plain wall, I see little dots), I also occasionally see silver squiggles in my eye sight, excessive sweating, my hands can get pruny very easily (there probably a more official term for this...), very minor leaky heart valve, PCOS, severe acne, thristy, I remember my dreams is great detail.

Notes: I use to feel dizzy when I walked up stairs or stood up, but I take salt tablets and that helped that. Now I just feel out of breath when I walk up stairs. I ran a 5k back in October, sometimes jogging is a struggle, and impossible if running a hilly course.

Tests: Positive Tilt Table (though one Dr. told me this test is pointless...), Stress test was normal, but highest blood pressure was 137/93, which I think is a little low, but doctors seemed unconcerned, normal EKGs, normal ECHO (minus the minor leaky heart valve), 24 hour blood pressure monitor was normal, 5 hour glucous tolerance test suggested hyperinsulinemia, but a follow up A1C test said I was normal, I had a thryoid test that suggested minor thryoiditis, but all tests since have came back negative, negative for Lymes, negative for epstein barr, negative inhome sleep study (for sleep apnea), normal B-12 levels, Tests from the neurologist: Anti-DNA and antibodies sm rnp ro la all negative (I think this was for lupus and sjorgen's?)

I'm going for a brain MRI soon and potentially a real sleep study.

So like I said, I'm curious if anyone has had similar symptoms/experiences and can maybe suggest a doctor/medical area that I have over looked. Thank you.

[ramakentesh]

The rest could be POTS but the months before I developed POTS out of the blue I developed visual snow. Positive tilt test meaning you have POTS? As for the doctor saying that the tilt test is meaningless - dont assume every doctor know everything. All current data on POTS suggests tilt is the gold standard.

[Aimes]

Many of your symptoms sound very similar to mine. Scoliosis, always cold, excessive sweating, dizzy, nauseous, it's like reading a list of my own symptoms! I recently was approved to see Dr. Goodman at Mayo Clinic in Arizona. He's a neurologist and I saw him back in 2007 when he was in Minnesota. I've heard that he has a new interest in Mast Cell Activation Disorder and that is what I suspect I'm dealing with. I'll let you know how it goes. Currently, I'm waiting for an appointment to open up as I'm told he is completely booked! Hopefully I'm able to go soon! I hope you also get answers soon! We need to get healthy! :-)

[jpjd59]

Did your symptoms occur after an illness? If so, you might want to see an infectious disease/immunologist doctor who knows about cfs/dfids.

[looneymom]

Are your symptoms worse after you eat? If so, you might want to be checked for MCAS. My son has POTS and will be seeing a hemotologist to investigate the MCAS.

[sue1234]

My first thought was hypoglycemia when you mentioned feeling "low" after your meals. I would like to hear what your results were for your 5-hour OGTT. I have a high insulin issue, also(for many years).

[socksrule]

Aimes/looneymom- Where can I get more information on mcas? Could it be that I eat breakfast/lunch then 2.5hours later I want to fall asleep, could be mcas? What I find weird is I really don't have these symptoms after dinner. I wish both of you good luck on your health journey!

jpjd59- I don't think I was sick prior to getting these symptoms, or at least I do not remember anything.

Sue1234- Here are the results from my 5 hr glucose test: fasting 82, then every hour: 197, 212, 132, 93, 57, corresponding insulin levels: 5, 39.6, 130, 349, 113, 7.3. 6 months later my A1C was 5.2. I went on a low carb diet, which helped my fatigue only a little...

Other things I forgot to mention, wounds on my hands/arms are slow to heal, motrin tends to make me feel better. I just got back my antinuclear antibody test and I got a 1:40 speckled, which sounds like it's on the border of normal/abnormal (depending on what I read online...)

[imapumpkin]

I've had many of the same symptoms. For 2 years I lived with POTS and was pretty much fully functioning and although everyone is different, here are some things that I have found and worked for me to help me feel better.

The squiggles in vision and "visual snow" may be ocular migraines (migraine auras without the headaches). It is usually caused by decreased oxygen to the brain. Which valve is leaky, is it your mitral valve?

In terms of frequent urination...been there. Try increasing your fluids containing electrolytes like Nuun tablets in water or SmartWater or Owater that contain electrolytes. I've experienced relief from so many BR trips and retain fluids much more when they contain electrolytes (although that does not include gatorade, that will likely irritate your stomach with all the sugar, dyes and flavoring.)

If you are able, short bouts of exercise, for instance 15-20 min 3 times a week on a recumbent bike is good to to combat fatigue, but it you cant tolerate exercise fatigue is really tough.

I would def recommend the POTS specialist I see, but I'm not sure what region you are located in. Good luck!

[sue1234]

Wow! Your insulin sure went up high! Mine would get up to 180, the same level my glucose got to. I also plummeted into the 50s, for me happening at the 3-hour mark also. My A1c first was 4.9 and then 5.1. So, I understand what your lowish A1C means, that your glucose levels don't routinely go that high. What did your doctor say about your numbers?