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I haven't posted in awhile as there really hasn't been any progression with a diagnosis for my symptoms. (Previous posts detail my experiences)
I am currently seeing a specialist at one of the local cfs/me clinics as my GP wanted me to see a specialist before he made a diagnosis of cfs/me. She has stated that she feels it is too early to make this diagnosis as there are other things she would like to rule out first. She has been so good at looking at every possibility and acting on it.
Yesterday I attended a neurologist appointment that was made because of pain and odd sensations from nerve pain to tingling that I have been experiencing on my left hand side. This effects me from my left temple to my left foot. I get severe headache/migraine on the left side of my head with very heavy left arm and leg (Usually around the joints, hand and foot) which makes it difficult to use the limbs easily.
Anyway as soon as I walked into his office he said "You have been seen recently by the cfs/me specialist" to which I answered yes and gave a breif description of why I am seeing this specialist to which he replied "I have no time for this cfs/me thing, you just need to exercise and you will improve" "cfs/me is not real".
I was absolutely shocked at his rudeness but did have to laugh as I have seen others experiences and thought it was now my turn to experience this attitude.
I was quite rude back at this point and said that I was not there to discuss whether I have cfs/me or not but to get the issues with my left hand side looked in to.
At this point he said "Tell me what has been going on for you to be here today" so I started at the beginning, inner ear problems then eustachian tube problems to sinusitis followed by many cfs/me symptoms. To which he replied "You are decommissioned as you was laid up at the beginning with the ear issues etc and now you need to exercise and gradually increase then you will be fine, anxiety is holding me back and exercise will help".
I just smiled and said "Is there any point in me being here to see you as you seem to have decided this is a waste of your time" to which he said "Fine strip down to your boxers and jump on the bed" he done a brief neurological exam and said "you are fine, all reflexes react how they should and you are not weak" "You need to get this cfs/me out of your mind and get moving, don't get dragged in to this cfs/me business or your life will not improve".
I was horrified and just felt embarrassed as there was also a student in the room and he kept stating to his student how mad this cfs/me "thing" is.
I left in disbelief, this was so unprofessional and it made me feel so bad. I have had to laugh at the experience but I am pretty mad that I wasted 5 hours of my time to go here for this.
I have an MRI on the 1st of June then will be returning to see the cfs/me specialist who I imagine is not going to be too happy as she has nothing from this appointment that can help with answers to what is going on on my left side (Unless the MRI shows something)
What should I do as I really don't want to have this experience again and I worry she will want this appointment made again to investigate this issue.
I can't believe how rude these professionals can be regarding this considering all of the information available to state this is a very real issue and not all in the mind.
I just hope others here do not have an experience like mine.
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Wow! I'm sorry you had to go through that! I don't think I would have been as nice to the guy as you were. I had a similar experience with a neurologist after I began developing ME symptoms. He just stared at his computer for like 15 minutes and didn't say anything. Then he finally looked up and said, "sorry I don't see anything wrong". The whole time I'm thinking this guy is an idiot. Not too long after that he was in the local paper. Turns out he's a drunk with multiple DUIs lol.
Anyway, I just wanted to say that there are some rarely diagnosed left sided conditions that can cause CFS/ME and the symptoms you're having. The first one is called Nutcracker Syndrome (Left Renal Vein Compression). It is a known cause of CFS as well as migraines and arm heaviness/pain. Google: Nutcracker Syndrome and Chronic Fatigue Syndrome together in the same search. There have been a lot of articles written over the past 5-10 years showing how this condition can cause severe, debilitating CFS and every symptom of CFS. Here's some symptoms listed for the Nutcracker Syndrome from an article written over 10 years ago:
Chronic Fatigue Syndrome
Severe Gastrointestinal Symptoms
Another very similar condition is one that I got diagnosed with recently called May-Thurner Syndrome (Left Iliac Vein Compression). It as been causing me "mild" CFS for the past 25 years and more recently symptoms of ME. It can also cause lower back, thigh, groin, and heavy/painful left legs. Here are symptoms listed for May-Thurner Syndrome from a vein care clinic article:
Then at 70% or more compression of the Left Iliac Vein can cause Leg Pain or Swelling, Pelvic Pain, Pain w/Intercourse (Dyspareunia), Pelvic Pain after Intercourse (Post-Coital Pain), Lower Back Pain, or Urinary Problems.
That's exactly all the problems this condition was causing me. After a simple stenting procedure all my problems disappeared within a couple days. I met a lady recently that had just been diagnosed with May-Thurner and Nutcracker Syndrome and she also has CFS and knows these conditions could be the underlying cause of Chronic Fatigue as well. It's just that they are so rarely diagnosed and poorly understood that most doctors don't even know what these conditions are. This is just my opinion but I would recommend at least getting these conditions ruled out as a cause of the problem you're having. A Vascular Surgeon or Interventional Radiologist are the kind of doctors that deal with these Vascular Compression Syndromes. Hope this might help! Feel free to ask any questions.
Thank you for this information, I have never heard about this so I will be mentioning this to my specialist on my next visit to see if this could be causing my symptoms.
I will let you know how it all goes and may bother you with questions at a later date if need be.
Please keep us updated! I'm glad that you have a supportive specialist that is fighting for you. I'm hopeful that you will find some answers. I sent you a private message with some more info about these conditions. Feel free to ask any questions!
I'm sorry that you had to go through that with the neurologist. I've had ME/CFS for 17 years and have run into some doctors who share your neurologist's beliefs/attitudes - it's very disheartening. I'm afraid that until there is a definitive diagnosis for ME/CFS many doctors will continue to write it off.
Maybe you can get in touch with a ME/CFS support group online. There's bound to be other people who have gone through what you are dealing with who can offer support and direction. I have dealt with similar medical disbelief and it was shocking and seemed most unprofessional.
Other than the neurologist it sounds like you have a good specialist. ME/CFS is not a diagnosis that is not easily arrived at - it is arrived at by a process of elimination. I hope that you will get some answers soon, good luck to you.
Thank you for taking the time to reply.
Thankfully I do have a very good, supportive specialist looking after me at the moment. She has been very good with ordering lots of new tests that my gp has not thought of.
The attitude wasn't a massive shock because of others experiences that I have read about in these forums so I knew it was likely that i would meet someone with these views one day but it was still very unpleasant to be in that position and I hope one day these views will be forced out to ensure other sufferers do not experience this unprofessionalism.
I spoke to my specialist yesterday as she called me to ask how the appointment went and she was very unhappy with what I had to tell her. She is contacting him to discuss this further and will be looking at sending me to a different neurologist as she still would like the issue with my left side investigated.
I just hope the next one does the job they are being asked to do regardless of the possible outcome.
I will update all with this when i know more.
There was a piece in the New York Times recently about the scandal of junk UK 'research' for CFS, it was titled 'Getting It Wrong on Chronic Fatigue Syndrome' and might be of interest.
I think I read that article. Was that the same one that researchers said if you have CFS all you have to do is exercise more and pretend you don't have it? What a joke!!
Most importantly it was about how they conducted a poor quality trial and spun trial data in ways that made it seem like their treatments were effective. A lot of those in UK medicine still trust their work, and are unaware of the problems with it. It has led to a culutre of prejudice and quackery that can be quite difficult to challenge, although there's now growing recognition of the problems with this work in the academic literature. It could be worth having a print out of some info to share with doctors? Or they could just dismiss it out of hand!
Thank you for this information, it was a very interesting read.
It's really important that you file a complaint with the hospital about his attitude. Unless you do this he will continue this unprofessional conduct. It's irrelevant what his views on Cfs are, he must act in a professional way at all times.
please help others by making that complaint.
My specialist called me yesterday to ask how the appointment went and she was absolutely disgusted at his unprofessionalism so she is contacting him to discuss this further so it will be interesting to hear what he says to her.
I will be looking in to making a complaint regarding his attitude and the fact that he couldn't see past the cfs/me even though I was not there to see him regarding this as this was supposed to help understand what is causing these issues I am experiencing on my left hand side.
This is not the first time I have had a bad experience at this hospital with specialists as in the beginning of all my issues in February 2016 I was sent to the ENT specialist regarding my sinuses and after being asked about stresses in my life I was told it was anxiety and depression that was causing my issues.
I wasn't happy with this as there was no interest shown by the specialist or even an examination carried out. I complained to my gp who booked me into an ENT specialist in another local hospital because she even agreed that I was "fobbed off" where I was given a CT scan which confirmed I had sinusitis and now I am waiting for an operation for this.
I am still angry regarding this as if this would of been carried out the first time I would of had this treated by now.
The attitude of these "Professionals" is shocking so I will ensure that I report these bad experiences.
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