Not sure if i have een mis diagnosed

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I was diagnosed a few months back with CFS, the Doctor said it was a mild form. I have had all sorts of blood tests and an MRI scan,  and nothing has been found.

My symptoms

For years now (around 10) I have had episodes of fatigue in my legs, this comes and goes, when it was bad i needed a walking stick, when it was good i did 100 mile cycle rides. The past two years i have started getting tired with it as well, the symptoms are getting worse, now a bike ride is a thing of the past, although i do keep myself as active as i can.

I have also noticed i have suffered with cognative issues as well, this is more recent.

After reading what others are saying, i am seriously doubting i have CFS at all, as  my symptoms are a very slow progresive, over several years.

I do aslo have Type 1 diabeties and a rare form of muscular dystrophy, but these have been rulled out. I'm 48, work full time, never smoked, do like a drink and have a very healthy diet.

Whats your thoughts???

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8 Replies

  • Posted

    What you're describing does sound like mild chronic fatigue. I was recently diagnosed with May-Thurner Syndrome (Left Iliac Vein Compression). It has been causing me Mild Chronic Fatigue for the past 25 years. It's a condition that is usually only diagnosed if you develop blood clots and swelling of the legs.

    What isn't very well known is that it can also cause Chronic Fatigue, Muscle Weakness to the legs, Exercise Intolerance, Cognitive Dysfunction, Anxiety and Depression. Google: May-Thurner Syndrome and Fatigue and Muscle Fatigue and Leg Pain. Not everyone develops blood clots with this condition, and if you don't then no doctor would think of May-Thurner Syndrome as a cause of CFS, especially mild CFS. That's exactly what was causing mine though. After I had a stent placed in my Left Iliac Vein about a year ago, almost overnight all of my problems started disappearing.

    More and more people are starting to discover May-Thurner Syndrome Without Blood Clots or DVTs or any obvious sign of this condition is the cause of their CFS, mostly mild CFS. A Vascular Surgeon or Interventional Radiologist are the kind of doctors that deal with this condition. Hope this might help!

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    • Posted

      hi Jim,  

      I was "diagnosed" with ME after post-viral fatigue did not go after 3 months. But this was not so much a diagnosis as just that nothing else showed in blood tests

      My continuing problems include muscle weakness, legs that sometimes seem to go in any direction that the brain is trying to tell them, fatigue, anxiety, Cognitive disfunction including hearing problems which have no relevance to my ears as tests show perfect hearing.

      But I also have discomfort and pain in my left side and, wondering if this might be connected, mentioned it to my GP.

      She listened with stethoscope to both kidneys and told me that she could  not hear any abnormalities that she would expect if there was obstruction.

      But is open to anything I can find out further about the syndrome. 

      I am going to google as you suggest, but do you mind if I ask some questions.

      Are you based in US or UK?

      How were you diagnosed with May-Thurner Syndrome?

      What were the symptoms?

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    • Posted

      Thanks for the reply!

      Just curious. Where is your left sided pain located? I'm assuming near the kidney if that's what they were checking. There's another condition called Nutcracker Syndrome (Left Renal Vein Compression) that has actually been shown to cause CFS and just about every symptom of CFS including possibly post-viral CFS. It's very unlikely that a stethoscope would pick up this condition. Google: Nutcracker Syndrome and Chronic Fatigue Syndrome together in the same search. There is actually a lot of info over the past 10 years showing that severe compression of the Left Renal Vein is the most likely cause of severe Chronic Fatigue.

      May-Thurner Syndrome (Left Iliac Vein Compression) is a very similar condition to the Nutcracker Syndrome, and can cause many of the same problems. Some people even develop fevers and flu-like symptoms with these conditions before the onset of CFS so it's assumed that it's caused by some mysterious virus (post viral). They are also known to cause Orthostatic Intolerance and Exercise Intolerance. It's very likely that most cases of CFS/ME are caused by severe compression of either or both of these very large veins. This condition has been causing me mainly Chronic Fatigue, Anxiety, and Depression for the past 25 years. It wasn't until about 3 years ago that I started getting the symptoms of ME, brain fog, muscle fatigue, balance issues, insomnia, difficulty Breathing, and leg, thigh and groin pains.

      Long story short every test came back normal except I learned that I had Vericocele Veins (dilated veins in the testicles). I asked my Urologist to refer me to an Interventional Radiologist to do a Pelvic Venogram to look for the cause of the Vericoceles. It wasn't until my Interventional Radiologist was specifically looking for May-Thurner Syndrome and compression of my Left Iliac Vein that it was easily seen on the Venogram. That's when I started doing research into May-Thurner and discovered it actually causes many of the same symptoms as CFS. The problem is that the only symptom doctors know to look for with this condition is blood clots and swelling of the legs. But not everyone develops blood clots with this condition and many people will be diagnosed with CFS instead.

      After my doctor placed a stent in my Left Iliac Vein almost overnight most of the problems I had been having started disappearing. By the next day the brain fog was gone, as well as the balance issues and leg pain. Within a couple days every ache and pain in my body was gone. It took about 2 months before my sleep patterns returned to normal and I started feeling like my old self only a lot less fatigued. If you do have either or both of these conditions it's possible there may be a miracle "cure". May-Thurner Syndrome is one of the "better" Compression Syndromes. The Left Iliac Vein is a good location for stenting and can possibly give you great relief from your symptoms.

      I live in the US. Thankfully I had good insurance and found a doctor that was very knowledgeable about this condition to even know to look for it. Feel free to private message me as well. I can send you some great articles about these conditions. Take Care,

      Jim

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  • Posted

    Have you been assessed for MS? Some of your symptoms could sound more like this than CFS although to some degree the two can be similar. 
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    • Posted

      Not been assessed for MS. Looking at it I would have to agree with you, looking MS, it does fit my symptoms more.
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  • Posted

    Your symptoms sound similar to mine. I also was a cyclist and could ride 65 miles without training but then it all fell apart.  I fought my Cfs for years, my dr use to call it boom and bust. 

    A couple of years ago I had enough and decided to take her advice and I did 2 things. I started doing brain games on my iPad such as solitaire for periods of short attention and suduko when it got better. I play these games every day to keep my brain going. I still find that it's extensive brain activity which makes me the most tired. 

    As for exercise i started to seriously pace and pace and learnt to say no a lot. I started out doing very simple indoor cycling at first just a few minutes, no resistance and built it up slowly. At 30 mins I went outside, not ready, put me in bed for several days, so back a few steps. I continued to learn and cycling has been my solution. Lady heat set myself a target of 30 miles and I made it. This year it's 50 miles but I have had a few setbacks this year doing too much so I amatill learning.

    i amgetti g back to where I was but every day I am very careful how much energy I use and for me that system is working and I am so much happier 

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    • Posted

      Thanks for your reply. Our experience do seem quite similar. I have an electric assisted bike, just to get me to work and back, it's only 1 mile. But tbh I can't use that much these days. Any thought of a normal bike now is a distant thought. I am finding my flare ups come on there own now, with out exerting myself or doing any exercise.

      Life a b***h ain't it

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