Undiagnosed Neurological Disorder + Possible Pots

[Natops]

Last year (May 2011) I went from a healthy runner who ran 10 miles a week and went to the gym twice a week to feeling like I was 80 years old. It came on feeling like I had the flu (body ache without the fever or sneezing). I just had that achy body feeling. A few weeks later both my legs were always stiff (down my hamstring and calf to my feet) and numb like. No inflammation or swelling. Needless to say – I was under the umbrella of exercise intolerance. My legs would be extremely heavy after a short walk. To this day I am the same way. As the months have gone by my fatigue, body ache, and leg stiffness has gotten worse. Today both my feet and legs are very stiff and achy. It always feels the worst in the morning – especially when I get out of bed. To temporarily reduce my body ache and fatigue I will do some real light exercise (jumping jacks/squats/ arm rotations) for just a few minutes. This will reduce my aching from about a 7 to a 4. Around November 2011 the postural dizziness started to kick in and has progressively gotten worse since. An ENT says he noticed I have slight nystagmus.

I’ve spent the last year visiting over a dozen doctors (primary care, neuro, rheum, endo). Tons of blood work done on me. EMGs x 2, Spinal tap, MRIs from head to toe, leg skin biopsy for perph neuro, CT scan of stomach, X-ray (chest), ultrasound of the abdomen and an endoscopy could not point the doctors even in the right direction to help find a diagnosis. The only think of great significant – at time of onset – my liver enzymes were very high for about a month. They then returned to normal (July 2011). Plus – my blood work shows I am somewhat anemic.

In the last months (April/May 2012) I have developed some new concrete symptoms which I went to have checked with my local cardiologist. I went out and bought one of those fancy automatic blood pressure machines. Since I felt my worst in the morning getting out of bed, I started to take and record my blood pressure laying down in bed and then getting out of bed (after 3 mins). For 30 days I have done it. The typical average results were:

Laying down 100/60 pulse 65

Stand up (3 min) 102/76 pulse 110

So on average my pulse would increase 30+ bpm upon standing. Another new significant symptom was my feet started to turn blue just from sitting or standing for a few minutes. I was laid up in bed with crippling fatigues and dizziness. My cardiologist did a full work up on me to rule out and physical cardiology problems (Echography, Stress test, Ultrasound of artery and heart). The cardiologist says he thinks I may have POTS based upon my 30+ bpm, blue feet, dizziness, and overwhelming fatigue. So no TTT or super high pulse. He started treating me first with Midorine (5mg) 3 x a day. I still felt pretty bad so he told me to double the dose – (5mg) 6 x a day. He put me on compression socks. The socks do help prevent my feet from turning blue. He told me to drink 4 litter of Gatorade a day. He then put me on flusrocortisone 0.1 mg a day. Those things stabilized my dizziness so I was able to work. I do feel slightly better. I’m not as dizzy. I just have to be careful not to over exert myself. He then added BB. I felt really bad from that and quickly got off. I’m not completely convinced that I have true POTS. The increase in my pulse (tachycardia) could be due to the pain I feel in my legs upon standing and not the postural.

Does this sound like a neurological disorder to you? Any ideals on what this could be?

[bellgirl]

Did you ask your doctor? Sounds like POTS to me...Are you sure he didn't give you a diagnosis? Those are all the medications and treatment for it. Sorry that you have to be here. Dizziness/Vertigo, fullness in my head, fatigue, neck stiffness, jaw pain and tremulousness were my worse symptoms before diagnosis.

[Lemons2lemonade]

Interesting I have a slight nystagmus too. Have you had your potassium levels checked?