Are u sure you have fibro could you have been misdiagnosed? Please read

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FXTAS
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/20/2008 10:59 PM (GMT -7)   
My name is Jessica I am fairly new to this board. I got diagnosed with fibro 2 weeks ago in that time my son also got diagnosed with ADHD....upon doing tons of research I found a link between Fibro and a condition called FRAGILE X......it turns out that my fibro has probably been misdiagnosed and that I probably have a condition called FXTAS.

Do any of you have the following symptoms?

Symptoms of FXTAS:

Symptoms usually develop in older age; average age of onset in 60 yr. The more CGG repeats, the more severe are the symptoms.

Tremor that resembles essential tremor is a common early symptom, usually followed by ataxia within 2 yr. Other symptoms may include slow movements, stiffness, and decreased facial expression, similar to Parkinson's disease.

Cognitive impairment, including loss of short-term memory, slowed thought, difficulty problem-solving, varies. These symptoms often progress to dementia. Depression, anxiety, impatience, hostility, and mood lability may develop.

Sensation and reflexes in the feet may be lost. Dysautonomia (eg, orthostatic hypotension) may occur. In later stages, bladder and bowel control may be lost. Life expectancy after motor symptoms is reported to range from about 5 to 25 yr.

In women with the premutation, symptoms are usually less severe, possibly because the presence of another X chromosome is protective. Symptoms more often suggest multiple sclerosis or fibromyalgia than FXTAS. These women have an increased risk of early menopause, infertility, and ovarian dysfunction.

My second question is does anyone in your family have Autism, Fragile X, ADHD, Mental Retardation?

If so I would love to hear from you....I believe my fibro has been misdiagnosed....and I wonder if there is a link here.

Thanks,
Jessica

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 10/20/2008 11:14 PM (GMT -7)   
I don't have an official diagnosis of fibro because I don't want it in my records. It can hurt you when you try to get insurance. Also, after a fibro diagnosis, many docs start blaming everything on fibro. When you don't inprove, they try to throw a depression label on you.

I believe I have fibro symptoms as a result of Lyme Disease and from the neck injury I received in a car accident.

There is no history of autism, Fragile X, ADHD, of MR in my family.

FXTAS
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/20/2008 11:18 PM (GMT -7)   
THANK YOU....please keep the replies coming...either way...this is a big help for my search on my fibro and what is affecting my son....if interested you can also read this article from time magazine

http://www.time.com/time/magazine/article/0,9171,1818268,00.html

Of course I would encourage you to do your own google search on Fibromyalgia and Fragile X

The information I have learned so far has been enlightening, and I wonder if there are more women like me out there.

FXTAS
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/21/2008 12:00 AM (GMT -7)   
I also noticed that we all have other things in common besides Fibro and that is irritable bowel, diabetes, anxiety, dropping things, vertigo, falling down, shakes, depression...just to name a few....

I was reading some case studies and found that I suffer from a lot of the same issues as these patients and they were not diagnosed with Fibro....but were actually diagnosed with FXTAS.....I think if you have some suspections you should be tested to see if you are a fragile X carrier.

Read the case studies starting at patient 1....continue reading until patient 4

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1181968


any similarities between your symptoms and any one of these women?

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17095
   Posted 10/21/2008 9:06 AM (GMT -7)   
FXTAS, welcome!  I have been reading what you posted, along with other things.  Yes, some symptoms are alike but Fragile X Syndrome is, according to the National Institute of Health, a form of inherited mental retardation.  I have had fibro for 21 years and haven't had these problems.  Here is the link to that.
 
 
You probably are not misdiagnosed.  My son is ADHD and I'm diabetic but that doesn't mean I have Fragile X Syndrome.  Many illness share the same symptoms.  Have you checked out the Fibro 101 thread...the second thread on the forum?  There is a lot of info on fibromyalgia, including a list of symptoms we have along with a link to "What Else Could It Be".  You will see that fibro mimics several other illnesses, including MS and lupus.  Naturally, if you are getting Parkinson-type tremors, etc., you need to discuss it with your doctor.
 
Continue to read past posts and this may just settle your mind down.  If you are truly that concerned, then ask for the testing for Fragile X Syndrome.  I hope you get the answers you need.
 
Sherrine 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


FXTAS
New Member


Date Joined Oct 2008
Total Posts : 4
   Posted 10/21/2008 12:57 PM (GMT -7)   
Sherrine,
thanks for your reply....I am getting tested for fragile x...the results dont come back for 4 weeks.....I just was wondering....if anyone here was sharing similar medical/family experiences. I am 29 years old...not the typical 60 years of age that they see the FXTAS onset.
Thanks-
Jess

confused Okie
Regular Member


Date Joined Apr 2009
Total Posts : 164
   Posted 12/14/2009 4:08 PM (GMT -7)   
Sensation and reflexes in the feet may be lost.

I have plenty of sensation in my feet right now.......ouch, ouch!!!! D**n feet.......
If you think you can, you can. If you think you can't, you won't.
I may not do things like other people, but I get things done in my own way, in my own time.

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