Chronic Fatigue Syndrome Community
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Avatar universal

How do you go about treatment and doctors as a possible CFS patient?

Hi all. I'm an 18 y/o male, and since two years ago I started experiencing symptoms of chronic fatigue - energy depletion on a random basis throughout the day, progressive cognitive impairment - 'brain fog' - memory, concentration, focus all slowed down, light-headedness among other symptoms...
I initially thought it might've been MS (Multiple Sclerosis) but haven't experienced any physical symptoms. It all seemed to began after an emotionally-draining time. Had multiple blood tests done, showed no indication apparently (however I imagine there was no direct observation via microscope etc.).
Had an MRI scan performed on me in April 2016, results of which had not been told to me since other than the very broad ''normal intracranial movement'' via a letter, which doesn't rule out 90% of the abnormalities such as lesions. Couldn't contact the neurologist since - either through his clinic or his secretary - on multiple occasions (voicemail).
My GP is completely remiss, haven't heard from him in years, and he's constantly been substituted - just scheduled an appointment and apparently it'll take me until 25th october to see him.
I'm not sure who to go to or what to do at the moment, I can barely make it through the day on the usual basis.

I've also realised there is potential to resolve this - participation in Adult Stem cell clinical trials, and I'm trying everything I can to receive feedback on mri, or any approval to have a chance at entering something like that in the near future.
Sorry for such a long winded monologue, but could anyone potentially offer me any advice in this situation/ any treatment etc. because at the moment I'm practically zombie typing on a keyboard.

Thank you for taking your time to read this, really appreciate it.
2 Responses
Avatar universal
Sorry to hear what you've been happening to you. I've had chronic fatigue for the past 25 years since the age of 13 so I know what you're going through and wanted to share a story with you or anyone else with chronic fatigue.

Recently I was trying to get a diagnosis for Narcalepsy, which has symptoms that are closely related to MS. While I wasn't able to get diagnosed with narcalepsy, I did however get diagnosed with another seemingly different condition called May-Thurner Syndrome (left iliac vein compression) during a vein procedure.

My doctor, an Interventional Radiologist, told me he thought I would benefit from having a stent placed in my left iliac vein. He didn't know that I suffered from chronic fatigue, but after a little research I knew I had finally found the answer to my problems. One website I found talked about how this condition can cause extreme fatigue, anxiety and depression, which pretty much sums up the last 25 years of my life.

After having the stent placed, within 24 hours my chronic fatigue and anxiety were gone as well as the brain fog. I could breathe so much better and every ache and pain in my body slowly disappeared. I don't even get the hypnagogic hallucinations associated with Narcalepsy and MS anymore.

Unfortunately, the only thing most doctors know about this condition is blood clots and DVTs. They assume if you don't have blood clots then you won't have any symptoms. For me, nothing could be further from the truth. It's been causing me cognitive dysfunction, memory problems, ADHD, dizziness/balance problems. This condition is actually frequently seen in MS patients as well as another similar vein compression condition called Nutcracker Syndrome (left renal vein compression), which is already a known cause of chronic fatigue.

Some doctors are starting to treat MS as vein conditions (CCSVI) and I've read stories of people getting almost complete relief from their MS symptoms after getting stented for Nutcracker Syndrome and May-Thurner Syndrome as well as other veins. I've also read other stories similar to mine about people being "cured" of chronic fatigue overnight after having a stent placed for May-Thurner.

After talking with other people that have been diagnosed with these vein compression conditions and being treated myself, I would definitely recommend getting checked for May-Thurner Syndrome. A good doctor to go see would be an interventional radiologist or a vascular surgeon that is experienced in these conditions. The good news is if you do have it, a simple stenting procedure could give you great relief from your symptoms. I know I have been extremely blessed to get diagnosed with this condition. It's possible you don't have this, but I've been dealing with it for a long time and would say there's a very good chance that you do. Hope this might help you as I know there is not very much known about these vascular vein compression syndromes.
Avatar universal
Have yu checked for any type of virus? Like ebv
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