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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Anybody know of a CFS specialist around Fl/AL area?

Messages
10
Hello, I'm new here. I just got back from the Mayo Clinic in Jacksonville, FL. I was sent there by a local neurologist who told me I might I have a possible ALS(Lou Gherigs disease) diagnosis! Scared and freaking out as Im a young mom of 2 and was getting ready to graduate from UWF...I was told by the specialist there that this is not ALS. He did send me to an infectious disease specialist because of a possible chronic EBV(mono virus)....The ID specialist said that he thinks I might have CFS...So here I am and wondering if anybody knows of the best Dr. to see about this since I want an answer to my symptoms. Since August I've been having shortness of breath here and there. Twitching, and occasional jerks. I've been losing my hair ever since I had mono back in 2005. I did have a couple of episodes that came and gone since then where I had slightly blurred vision, tingling, and fatigue. Just want to find a Dr. to possibly give the best help if this is what it is.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hello, I'm new here. I just got back from the Mayo Clinic in Jacksonville, FL. I was sent there by a local neurologist who told me I might I have a possible ALS(Lou Gherigs disease) diagnosis! Scared and freaking out as Im a young mom of 2 and was getting ready to graduate from UWF...I was told by the specialist there that this is not ALS. He did send me to an infectious disease specialist because of a possible chronic EBV(mono virus)....The ID specialist said that he thinks I might have CFS...So here I am and wondering if anybody knows of the best Dr. to see about this since I want an answer to my symptoms. Since August I've been having shortness of breath here and there. Twitching, and occasional jerks. I've been losing my hair ever since I had mono back in 2005. I did have a couple of episodes that came and gone since then where I had slightly blurred vision, tingling, and fatigue. Just want to find a Dr. to possibly give the best help if this is what it is.

There is a good autonomic specialist in Pensacola, if that helps. He himself has POTS. If you want contact info, let me know.

Sushi
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
UWFgirl

From POTSplace.org :


Dr. Charles Randy Thompson
6706 N.9th Ave. Suite A-3
Pensacola, FL 32504850-476-8200
http://autonomicdisorderscenter.com

Mainly treats OI, POTS & NCS, although he does see patients with other autonomic conditions. Will treat adolescent children and older.

As a sufferer of OI/POTS, Dr. Thompson is a board certified specialist who had to give up Internal Medicine because of this condition. He returned to the University of Alabama School of Medicine to study under Dr. Cecil Coghlan. He has been back in practice on a limited basis for several years, treating only those with autonomic problems.

Last time I looked, he website was still under development. I was his patient for several years when I lived in Florida so feel free to ask me about him (in a private conversation).

He is a very compassionate and knowledgeable doctor.

Sushi
 

SanDiego#1

SanDiego#1
Messages
280
Location
SouthEast USA
I would love his contact info. Thanks, Sushi.


Hello, I'm new here. I just got back from the Mayo Clinic in Jacksonville, FL. I was sent there by a local neurologist who told me I might I have a possible ALS(Lou Gherigs disease) diagnosis! Scared and freaking out as Im a young mom of 2 and was getting ready to graduate from UWF...I was told by the specialist there that this is not ALS. He did send me to an infectious disease specialist because of a possible chronic EBV(mono virus)....The ID specialist said that he thinks I might have CFS...So here I am and wondering if anybody knows of the best Dr. to see about this since I want an answer to my symptoms. Since August I've been having shortness of breath here and there. Twitching, and occasional jerks. I've been losing my hair ever since I had mono back in 2005. I did have a couple of episodes that came and gone since then where I had slightly blurred vision, tingling, and fatigue. Just want to find a Dr. to possibly give the best help if this is what it is.


UWF- I would definitely have one of the Neurologist or whoever you see ck you out of MS, Lupus and Parkinson and don't just go for the Pots diag. These are critical to finding out what is really going on..

San Diego #!