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Form of CFS???????

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Old 09-29-2007, 12:48 PM   #1
Join Date: Sep 2007
Location: Birmingham, AL USA
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lwau93 HB User
Form of CFS???????

My mother began having "Spells" about 8 years ago in which she developed pain under her left breast that extended into the middle of her back, followed by an intense increase in her blood pressure, a headache, inner burning from the top of her head to the soles of her feet, rapid heart rate and extreme weakness.

She was finally diagnosed with Super Ventricular Tachycardia (SVT) and was ablated in June. The heart rate increase was helped slightly by the ablation, but not the intense spikes in blood pressure.

Following the ablation, the "spells" increased - she had over 20 within a 30 day period. She has undergone multiple heart catherizations, an EKG, EEG, MRA of the head, CT of the head, chest X-rays and tons of blood work.

All symptoms and signs pointed to a pheochromocytoma, but the test results and MIBG scan did not find a pheochromocytoma.

A psychiatrist evaluated her for possible psychological issues that might be manifesting themselves physically - he cleared her - said it is definitely physical.

With her most recent "spell", she developed a new issue - NUMBNESS in the left side of her head and down the left arm to the top of the hand, which lasted for over 12 hours. Earlier this year, she started to tremble on the left side when she experienced a "spell."

The cardiologists say her heart is fine, neurologists say they can't find anything, endocrinologists say they can't find anything and rheumatologists say what she is experiencing is not related to her fibromyalgia.

She has seen doctors in Montgomery, Mobile and Birmingham, Alabama (UAB).

We do not know what to do next. The "Spells" continue, making her extremely week. With the new signs with them, we are incredibly worried.

Has anyone ever heard of anything like this? Anybody know of anything similar to a pheochromocytoma that this might be? Any suggestions as to anywhere else in the country where we can take her since no one at UAB (University of Alabama at Birmingham) has any more answers? Any help that anyone can provide will be extremely appreciated.

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Old 09-30-2007, 08:16 AM   #2
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Re: Form of CFS???????

Hi Iwau,

My suggestion would be for her to go to a Lyme specailist. There are MANY people that are diganoised with CFS and Fibro that actually have Lyme disease. Because the testeing for lyme is NOT accuarate and show false negatives there are many losing their health because of it then have these labels put on them.

You may want to check out the lyme board. I do believe there is a Lyme Literate Medical Doctor around Mobile...If test are coming out normal and she is having all this odd stuff going on...You might want to look into this...

Good Luck!

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