New With All Kinds Of Symptoms...

[Mystery]

Hello everyone. I am excited to finally join the forums after much lurking. There is such good information here and I will truly appreciate any input and support that anyone has to offer!

Symtoms: Occurring for 3 Months plus.

Debilitating Lightheaded/dizzy/balance problems/confused when standing or walking for over 10 minutes. Completely gone after 5 minutes of sitting or laying.

Moderate/severe weakness in limbs (worse on left side.)

Moderate Loss of coordination in left hand.

Muscle fasciculations in arms, legs, hands and feet.

Dry mouth when standing or walking.

Shortness of breath.

Tests/Findings (tests and procedures performed in April, May, and June)

Neurological exam: Weakness in left hand

EMG: Normal

Nerve Conduction Study: Normal

Brain MRI: Normal

Brain MRI (1 month later:) Normal

Cervical Spine MRI: Normal

Blood tests: All Normal

Test Name : 25-Hydroxy Vitamin D, Total

Test Name : B12 Level

Test Name: CBC/Dif/Plt

Test Name : Comprehensive Metabolic

Test Name : Ferritin

Test Name : Iron Binding Capacity

Test Name : Lipid Panel

Test Name : Testosterone Free

Test Name : Testosterone, Total

Test Name : TSH

Soo, what do I have? I would love to hear opinions, suggestions, anything anyone has to offer. Thanks again!

[Katybug]

Hi Mystery,

I have no idea what you have but if you are trying to identify if this is a dysautonomia related problem, such as POTS or neurocardiogenic syncope, most of us have had a tilt table test at some point. My cardiologist also sent me for an exercise stress test prior to my ttt as well as an echocardiogram. She wanted to rule out any other cardiac issues prior to the ttt.

Take care,

Katie

[MomtoGiuliana]

I agree with Katie.

Symptoms that resolve on lying down suggest an orthostatic problem. Seeing an electrophysiologist or other expert in autonomic dysfunction and getting a tilt table test would probably be helpful to get more insight. Many of us have echocardiograms and also holter monitoring to rule out other heart problems.

[Mystery]

Thanks for your responses.

My neurologist ordered some blood work to start to look for autoimmune disease. I should have the results next week.

I will ask him about tilt table testing the next time I talk to him.

[Katybug]

I don't know how other docs feel about this, but my cardiologist would not send me for the tilt table test until I had the other basic cardiac testing. She said that certain heart conditions ought to be ruled out in order to make the tilt test as safe as possible.

[SarahA33]

Hi Mystery! Welcome to the forum. I agree with Momtoguiliana, symptoms that tend to disappear when your supine are often linked to orthostatic intolerances, and baseline cardiac testing would probably be a good place to go from here. Like Katie also mentioned, many doctors will often rule out cardiovascular conditions before sending a patient for a Tilt (Maybe a 24-48 hr holter monitor, EKG, etc). Many POTS patients are treated by a Neurologist and a Cardiologist/Electrophysiologist,. I'm not sure if you or your neurologist have someone in mind, but just in case this may be helpful in the future DINET has a great Physician List which has Autonomic Specialists that you can search for in your area. Here is the link: http://www.dinet.org/index.php/physician-list?view=physicians

Have you had any headaches or numbness in your extremities at all? I hope that you and your neurologist are able to come up with some answers so that you start to feel better soon. I know these symptoms can be really hard to deal with, but it sounds like you are on the right track. Best of luck! Sarah

[Mystery]

Thanks Sarah and everyone else.

No headaches or numbness. I had an echocardiogram two weeks ago and there were no abnormalities with my heart. After my last visit with the neurologist he ordered some blood work to test for autoimmune disease and a CPK test for muscular disease. No tilt table yet, as it seems like he is more interested in going after the possible underlying cause of the symptoms than diagnosing dysautonomia alone.

In the past two weeks I have developed an upper body rash that was diagnosed as tinea. I also have molluscum contagiosum bumps in the genital area that have been around for six months or more. I often wonder if they are related to an autoimmune disease or viral infection that could be causing my dysautonomia...