Hey, where did you all go to get diagnosed?

Hi Haley

If you think you might have CFS, spend the money on a private doctor who specialises in the area and then bring the information to your GP. It depends where to live, if you know a GP who is familiar with CFS then try that.

Julia.

You have to get a referral from a GP to see a specialist, you can't go without one.  I went to see one of the top people in the UK, he is a rhumatologist. 

I am on the road to recovery with my CFS, I fought it for years. I sorted myself out via pacing and became very,very strict about my energy levels. I cycled 60 miles the other week, progress from not being able to ride a bike. 

How did I do it. I describe it like learning to run a marathon when you can;t walk. I did it in very small steps, all on my own. My GP was the one who told me to pace. I went to a specialist, but only once my GP had run all the tests. Its pointless trying to get a diagnosis until all those tests are done, because CFS is a diagnosis of elimination. When all ideas are exhausted, CFS is usually the conclusion. Hence it takes a very long time, in my case over a year to get confirmation on my diagnosis. 

Where do you live or what catchment area is accessible for you? Not all private doctors are great. If you do have CFS it may be more like a marathon rather than a sprint i.e it won't be one visit thing. 

In the meantime ask you doctor for a screening for your tiredness you might be lucky to get a diagnosis of something easy to fix. 

Where do you live? If you're in the U.S., I might be able to give you specific information. The appropriate specialist is an infectious disease doctor or rheumatologist. Sometimes, doctors actually list a specialty as ME/CFS, which is the case with my current doctor, Dr. John Chia, who practices in Torrance, CA, USA.

Hi

I was diagnosed by an endocrinologist. Then confirmed by a professor he sent to privately who researched CFS/me. There is no specific test for CFS/ME. Many other things have to be ruled out first such as MS, lupus etc. So be prepared to have blood tests, MRI scan and other tests .

In Ireland or UK you don't need a referral to go to a private consultant. There are very few, if any general practitioners who are experts in this field. Alot of GPs still believe it is a psychiatric disorder. It costs around 100 euro to go for a first private consultation. A Doctor Derek enlander who resides in New York has researched CFS extensively and is currently engaging in a program with trials using the drug Ampligen . It took me years to finally get diagnosed. It was through a private consultant who sent his findings to my GP and then on to the neurologist, who agreed to put me on LDN which I found helped for a while. Hope this helps Haley.

Thanks for telling me all this guys. As of right now I’m seeing a neurologist and saw a rheumatologist that I probably won’t go back to as he specializes in arthritis and ruled out arthritis. However I am getting more blood tested and will see the nurse who works with the neurologist on Nov 14. Thank you

Good luck Hayley. I hope you get some answers soon. The not really knowing why you feel so ill adds to the stress . And stress just makes things worse. Take care x

Hi Haley, My heart goes out to you, especially since you are still so young and in college. Please pace yourself and do not over-do things. Since you are young, your chances of recovery are very good. 

I went to several doctors and finally found an infectious disease doctor who had a good understanding of CFS. If you are having pain, as well, a Rheumatologist would be a good doctor to see. I'm not sure where you live, but there are clinics who specialize in CFS/ME in parts of United States. Good luck to you and hope you can find a doctor to diagnose you soon, so you can begin the process of recovering. KPD