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Old 08-10-2006, 03:51 AM   #1
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brycry HB User
Help Please, Do I have CFS?

Hello Everyone,
I am a 36 year old female and for the past year I have been having some strange symptoms. First of all, I am always tired. I wake up after 7 hrs sleep and feel like I never slept at all. Also, exercise used to energize me, now I feel wiped out after a normal work out. I have muscle twitches daily that drive me mad, electric shock sensations, my balance is off and my memory is almost non existant. I had an MRI which revealed "some scarring deep in my brain" according to the Neuro. I had an EMG yesterday which was normal. My neuro also did a lot of bloodwork and ruled out several other diseases. Could CFS cause all of these symptoms?

 
Old 08-10-2006, 08:30 PM   #2
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HurtinHouston HB User
Re: Help Please, Do I have CFS?

Dear Bry,

You've done the right thing going to a neurologist for testing. CFIDS is really DX'd through elemination of other possibilities. You'll probably want to see an internist who specializes in CFIDS if no other answers are found to have some additional tests run. It can take a while to get through everything and get that DX, so hang in there and be patient. Do your best not to stress out over it and try to rest and eat properly.

I find that a high protien diet works well for my CFIDS, but not necessarily meat protien all the time. Sometimes I focus on eggs and nuts with raw veggies or soups.

God bless.

Debra

 
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Old 08-11-2006, 04:08 AM   #3
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peregrine HB User
Re: Help Please, Do I have CFS?

There are specific tests you can have done but you have to find the right doctor, which is not easy to do. Regular internists are usually not savvy enough about CFIDS. See if you can find a doc in your area who specializes in CFIDS. A good place to start would be to look for an infectious disease doctor and then query them as to their knowledge of CFIDS, what tests they perform, how many CFIDS patients they have seen, etc. You can also go to the National CFIDS Foundation site where they used to have a list of doctors in the US.

 
Old 08-11-2006, 05:43 AM   #4
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brycry HB User
Re: Help Please, Do I have CFS?

Thank you both for the reply. I am scheduled for a sleep study on Sept 6. I am just really frustrated because the Neuro won't even speculate as to what he thinks it might be. He said that he couldn't due to insurance regulations. Everything that I have read on-line about my symptoms brings me to either CFS or MS but the Dr. won't tell me if he thinks it is either. My major complaints right now besides the fatigue are the muscle twitches and electric shock sensations. Of course during the EMG I didn't have a single muscle twitch. I know I am not imagining these as my co-workers all saw my arm as it was pulsating during a bad twitching episode. I hope the sleep study reveals something one way or another. Thanks for all the support.

 
Old 08-11-2006, 06:21 AM   #5
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peregrine HB User
Re: Help Please, Do I have CFS?

brycry,

You might also check out Lymes Disease as many people who are diagnosed with MS, Lupus, CFIDS, ALS, etc.... are finding the underlying problem is Lymes, which has reached epidemic proportions.

All the best!

 
Old 08-11-2006, 06:54 AM   #6
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Re: Help Please, Do I have CFS?

Hi,
Bloodwork already ruled out Lyme disease as well as Thyroid, cancer and a whole bunch of other diseases. I am beginning to feel like a Lab Rat with all the tests. Will the sleep study reveal CFIDS if I have it?
Donna

 
Old 08-11-2006, 07:23 AM   #7
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peregrine HB User
Re: Help Please, Do I have CFS?

Quote:
Originally Posted by brycry
Hi,
Bloodwork already ruled out Lyme disease as well as Thyroid, cancer and a whole bunch of other diseases. I am beginning to feel like a Lab Rat with all the tests. Will the sleep study reveal CFIDS if I have it?
Donna
Okay, but most labs are ill-equipped to properly detct Lyme. There are only 2 that I am aware of - IgeneX in Palo Alto, CA & Bowen Labs. Most people test negative at Quest, Lab Corp, etc.

Hope you figure it all out

 
Old 08-11-2006, 07:50 AM   #8
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brycry HB User
Question Re: Help Please, Do I have CFS?

Hi,
Wow! I never would have expected labs to be that unreliable. Makes you wonder how many people are misdiagnosed. I have no idea what lab was used. I live in Maine so I am not sure if it was sent out of state or not. How would I go about finding that out?

 
Old 08-11-2006, 09:07 AM   #9
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peregrine HB User
Re: Help Please, Do I have CFS?

Quote:
Originally Posted by brycry
Hi,
Wow! I never would have expected labs to be that unreliable. Makes you wonder how many people are misdiagnosed. I have no idea what lab was used. I live in Maine so I am not sure if it was sent out of state or not. How would I go about finding that out?
Ask your doctor what lab he uses. Most docs would not send to IgeneX or Bowen unless you request it because most docs are not that savvy about Lyme.

 
Old 08-11-2006, 09:23 AM   #10
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brycry HB User
Re: Help Please, Do I have CFS?

Okay,
Thanks for the heads up

 
Old 08-17-2006, 09:51 AM   #11
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Re: Help Please, Do I have CFS?

There are lots of tests, some more accurate than others. I recently found a doctor that was willing to work with me to find the problems. Despite what other doctors had found based on their minimal tests, I have diabetes and a thyroid issue. The diabetes was never picked up by a fasting glucose, only the Hemoglobin A1c identified it. The standard thyroid did not register a problem but the seperate T3, T4 and antibodies did.

Finally because I was concerned that I had CF, the doctor tested for Ebstein Barr Virus (which I had in an active state) and Lymes (which I did not).

 
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