Anyone told they have/had chronic fatigue syndrome?
 

Hello, I'm back!

I've been told I have CFS by by Chiropracter/natural medicine practitioner.
I've had MRI's and tests for every other disease.
I am having another brain MRI in 2 weeks, but my neuro thinks it'll be clear.

Does anyone know a lot about CFS and how the sx can be similar to MS?

I've heard a lot of people with CFS have food intolerances (lactose and fructose) which I do.

It's a path I want to look into if my next MRI is clear.

Thanks.

I was told it was "probably" CFS or Fibromyalgia since I have so many trigger points that stay tender. I also have a migraine syndrome, so they were quite surprised when the MRI came back with some lesions. I had been gluten free for a long time when that scan was originally done, so it wasnt food allergies for me.

The best thing you can do is be patient, and wait for this result before you worry about the next result. Take notes, and LOTS of them! keep a journal. This way you are not saying "I think it was last week that my foot dropped" you can point to an actual date, and time with symptoms.

Being dx with MS or not MS is a process. There are more than 100 diseases that can mimic MS including the lesions. The MD will look at this book of 100 and start ruling out the ones that can be quickly ruled out thru a quickie blood test. Vitamin def, lyme, lupus, RA...then if still faced with no real answer will dig into the other 50 and start kicking around things like sjoghrens, phorphria, and the like. If he is unable to find those markers they move on to things that dont have markers or tests that can confirm them. They must use their best guess based on YOUR sx (remember MS is like fingerprints we all have different ones) and start to make a "probable" cause for what is happening to you. Devics, MS, and so on. Sometimes they hit it right on the head, and bingo! you fall into the right catagory. sometimes even with a new label it doesnt fit correctly and you keep struggling.

So, as you can see its a slow process that can take months, sometimes years to get a yes or a no. The abscense of lesions doesnt mean you dont have MS. It doesnt mean you do have MS, it depends on their placement, size, do they light up with Gad dye...so, as you can see its not as easy as one MRI and the book opens to the right page.

To complicate things further many of us have multiple conditions layered into each other. CFS, plus fibro, plus RA, plus lyme.

Best advice, is to pick out an MS center who deals in the complexities of this horrible disease and let them shake it out. LEt the big boys read the MRI scans, the blood work, the Xrays, and put their over educated, well paid degrees to work.

I hope you get some answers. :hug:

I have not been told that I have CFS. However, DD21 had it for a couple of years following mono. It was so hard on her as she was high school (freshman and sophmore year). She still fatigues easily but certainly not what it was back then.

There is a forum on NT for CFS and fibro. Check it out as you may find lots of information in there that might be helpful to you as well as answers to some of your questions.

http://neurotalk.psychcentral.com/forum12.html

What are your symptons?

I think most MSers have had CFS or Mono or both. MS and these other illnesses are like evil twins..:eek: and very often go hand in hand.:mad:

My sx are:[LIST][*]left side leg and arm heaviness, tingling. Trouble walking/limp when really bad.
twitching in my muscles
heat intolerant (makes me tingle, really tired and sluggish)
bug crawling feeling, usually on my scalp[*]Nerve shooting pain in left leg, head, other places where they just pop up[*]loss of balance sometimes[*]dizziness[*]right eye pain, but I think it could be sinus - no blurriness
- forgetfulness - more like not finding the right word, but that could be anything! (I'm almost 40)

The sx come on mildly when I'm tired, unwell or stressed.
The last 'big' episode of really bad sx (day off work) was a month ago, and that hadn't happened for about 14 months.
Sx were really bad in the first year (just over 2 yrs ago now).

I had alot of the same symptons at first and then later more symptons appeared. I have been diagnosed and had surgery for Chiari I malformation and Arnold's Chiari. Basically, my skull is to small for my brain. The "brain tonsils" were herniated through the base of my skull. My aquaducts were too small to allow spinal fluid to flow. It took many years to get the right diagnosis. I had been wrongfully diagnosed with ocipital neuralgia and also many doctors thought I had MS. Chiari is hard to see however the right neurologist can diagnose it. I also had a MRI study of the flow of spinal fluid in the brain also and that is when they found the "Arnold's Chiari". This is a congenital malformation but doctors have no idea why I didn't have any symptons until my late 40's. I am 48 now and had my last surgery 2/2011. Hope this information helps you in some way. I got several opinions with different doctors before I was correctly diagnosed. Don't give up.

My daughter had it in high school and part of college. She eventually grew out of it but still has some neuralgia problem but yet I think every female member on my Mom's side has it for some reason. She took B 12 shots. or rather I gave her B 12 shots. When it came time for her to go to college I tried to get her to learn and she couldn't so she quit. I know an infirmary probbaly would have given it but it scare the bejeebees out of her. And I was an RN!. My sister has fibromyalgia and has a lot of it. Her doctor is going to start her on it. She says she will be able to give it to herself but if she needs help all she has to do is ask.