Strange Symptoms

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Akkami
Regular Member


Date Joined Nov 2013
Total Posts : 340
   Posted 4/24/2015 3:54 PM (GMT -6)   

Hello,

 

I originally posted this on the Fibo board but I didn't get any answers. This tells me that nobody who read the post has had these issues. Just wondering if anyone here has had them. Note: I have never been diagnosed with Raynauds, but thats what my hands and feet look like.

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Hello,

 

I have been sick for almost 2 years now. At the very beginning I was told I had Fibro but because of many odd symptoms and the fact that none of the Fibro treatments worked, I started seeing other doctors. I have over 30 symptoms. Some of them are strange even for Fibro though. Just wondering if anyone has these…

 

Of course I have the pain, fatigue, sleep issues, weakness etc. Some of the more unusual issues are: a diagnosis of Optic Neuritis (which is generally associated with MS), a blind spot in the middle of my vision for the first few minutes of each day, a condition known as Erythromelalgia (http://www.erythromelalgia.org/WhatisEM.aspx) on my hands, mild Raynaud’s on my hands, increasingly worse tremors in hands and arms and nearly constant skin inflammation. I also have a lesion on my brain that has not gotten worse oer 2 years of MRIs. Also, my sense of touch is greatly deminished. It feels like I ahve a sheet of plastic over my entire body. My skin is very sensitive and everything leaves a mark.

 

I have seen 25 doctors and just recently got back from the Mayo Clinic in Jacksonville Florida. They never find anything in my blood ad they tell me it’s not Lupus. Even the Mayo Clinic says it’s Fibro or something like it.

 

I have tried LDN, Cymbalta, diet changes, acupuncture, various herbs and naturopathy, exercise… Nothing helps and I keep getting worse.

 

Has anyone ever experienced these symptoms?

 

Thanks,

A


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 4/24/2015 5:05 PM (GMT -6)   
Sounds like something more neurologic than autoimmune. Try somewhere other than Mayos but make sure it is a large clinic that will use their army of doctors to find out what is causing your symptoms.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Akkami
Regular Member


Date Joined Nov 2013
Total Posts : 340
   Posted 4/24/2015 6:44 PM (GMT -6)   
Thanks Bill. I've seen 6 neuros at this point. Thay can't decide whats wrong either.
IgeneX IgM Western Blot

18 kda +
31 kda ++
39 kda IND
41 kda +++
83-93 kda +

Becky20
Regular Member


Date Joined May 2014
Total Posts : 68
   Posted 4/26/2015 2:33 AM (GMT -6)   
Have you ever been tested for Lyme disease?
Diagnosed with SLE lupus October 2014.

Akkami
Regular Member


Date Joined Nov 2013
Total Posts : 340
   Posted 4/28/2015 4:08 PM (GMT -6)   
Thaks forthe question Betty. I have been tested yes. But based on the CDC criteria I am negitive. Also, various Lyme treatments have not helped me at all.
IgeneX IgM Western Blot

18 kda +
31 kda ++
39 kda IND
41 kda +++
83-93 kda +

DataDude
New Member


Date Joined Jun 2015
Total Posts : 2
   Posted 6/1/2015 5:45 AM (GMT -6)   
Hi Akkami -- I noticed that you also posted about Dr. Horowitz regarding Lyme -- did you end up working with him? I ask as I was recently given a Lyme diagnosis and am trying to locate people who have worked with Horowitz. His general model was recommended for my treatment, but I can't seem to find anyone who has actually worked with him. Can't tell if his treatment ideas are effective or merely well marketed. Thanks for any insight.
44 yo male, CFS symptoms since late teens, "chronic" Lyme diagnosis 2015 -- undertaking research on the success rates of treatment for those diagnosed with chronic Lyme.
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