Dear all,
Thanks in advance for reading and commenting. About six months ago I started to have a whole range of symptoms after a particularly bad virus infection (flu). Before that I was very healthy (actually ran a half marathon the week before!), never smoked, never drinked to excess. The symptoms were all very 'neurological' in nature. (Burning feet, feeling of weakness in my arms and legs, erectile dysfunction etc. all coupled with a general feeling of malaise).
My doctor was stumped and sent me to a neurologist. He did a very thorough battery of tests which included:
1) Blood tests ruling out diabetes, thyroid trouble, myasthenia gravis etc.
2) A nerve conductivity test
3) A visually evoked potential test
4) An MRI of both my brain and c-spine
5) Two thorough neurological exams
The result was completely inconclusive. To quote from the report that I was given: " Visual acuity wat 6/6 bilaterally with normal fundus examination. Motor examination was unremarkable with well preserved and symmetrical reflexes bilaterally and downgoing plantars. Sensory examination was also unremarkable. Romberg's was negative. Multiple investigations including MRI Scan of the brain and C Spine, nerve conduction tests and visual evoked responses were normal. A multitude of blood tests have come back normal including the inflammatory markers. We have not discovered any structural basis for his multiple symptoms."
At the end of the consultation the neurologist called in his more experienced colleague and they made a little joke about 'God only knows disease'. The older neurologist then had a bit of a think and latched on the fact that onset was related to a viral episode. In the end they wrote 'Post Viral Fatigue Syndrome' on the report and recommended no further action. Over the past few months I have been trying to educate myself about PVFS/CFS and attempted to follow some basic treatment steps. My problem is, however, that I not at all comfortable with the diagnosis. I had a look at some of the diagnostic criteria for PVFS/CFS and things just don't add up.
* I am not overly fatigued
* Certainly do not experience debilitating episodes of fatigue
* Do not experience post-exertional fatigue
* Experience no cognitive deficits (As far as I can tell!)
I do not, in short, meet some of the most fundamental criteria for a PVFS/CFS diagnosis. I cannot help but suspect that this is yet another case where CFS was used as a kind of 'wastepaper basket' diagnosis for a hard case. I would love to hear your take on this. Is it possible to have CFS without the fatigue that it is such a defining part of it? I certainly have something 'post viral' (or even just viral, not sure how 'post' I am) but really wonder whether I should simply let go and deal with my 'a-typical CFS' or if I should chase a more definitive diagnosis.
For the record my main symptoms at the moment are:
1) Burning Feet
2) Tired/Numb feeling in legs
3) Numbness/stiffness in both hands
4) 'Migratory' pain in the arms, more prevalent in the upper arms
5) General feeling of weakness in my arms
6) General feeling of malaise
I also have some facial symptoms (any thoughts about the relationship of this with PN would be appreciated).
7) Tight painful, jaw
8) Eyelid spasms
9) Numb lips
Any thoughts/ideas would be highly appreciated. Particularly if you could suggest some avenues of enquiry and/or which type of physician I should seek out next, especially since the neurology route did not prove to be too productive.
Kind regards and thanks again for your help!
Phil
Thanks in advance for reading and commenting. About six months ago I started to have a whole range of symptoms after a particularly bad virus infection (flu). Before that I was very healthy (actually ran a half marathon the week before!), never smoked, never drinked to excess. The symptoms were all very 'neurological' in nature. (Burning feet, feeling of weakness in my arms and legs, erectile dysfunction etc. all coupled with a general feeling of malaise).
My doctor was stumped and sent me to a neurologist. He did a very thorough battery of tests which included:
1) Blood tests ruling out diabetes, thyroid trouble, myasthenia gravis etc.
2) A nerve conductivity test
3) A visually evoked potential test
4) An MRI of both my brain and c-spine
5) Two thorough neurological exams
The result was completely inconclusive. To quote from the report that I was given: " Visual acuity wat 6/6 bilaterally with normal fundus examination. Motor examination was unremarkable with well preserved and symmetrical reflexes bilaterally and downgoing plantars. Sensory examination was also unremarkable. Romberg's was negative. Multiple investigations including MRI Scan of the brain and C Spine, nerve conduction tests and visual evoked responses were normal. A multitude of blood tests have come back normal including the inflammatory markers. We have not discovered any structural basis for his multiple symptoms."
At the end of the consultation the neurologist called in his more experienced colleague and they made a little joke about 'God only knows disease'. The older neurologist then had a bit of a think and latched on the fact that onset was related to a viral episode. In the end they wrote 'Post Viral Fatigue Syndrome' on the report and recommended no further action. Over the past few months I have been trying to educate myself about PVFS/CFS and attempted to follow some basic treatment steps. My problem is, however, that I not at all comfortable with the diagnosis. I had a look at some of the diagnostic criteria for PVFS/CFS and things just don't add up.
* I am not overly fatigued
* Certainly do not experience debilitating episodes of fatigue
* Do not experience post-exertional fatigue
* Experience no cognitive deficits (As far as I can tell!)
I do not, in short, meet some of the most fundamental criteria for a PVFS/CFS diagnosis. I cannot help but suspect that this is yet another case where CFS was used as a kind of 'wastepaper basket' diagnosis for a hard case. I would love to hear your take on this. Is it possible to have CFS without the fatigue that it is such a defining part of it? I certainly have something 'post viral' (or even just viral, not sure how 'post' I am) but really wonder whether I should simply let go and deal with my 'a-typical CFS' or if I should chase a more definitive diagnosis.
For the record my main symptoms at the moment are:
1) Burning Feet
2) Tired/Numb feeling in legs
3) Numbness/stiffness in both hands
4) 'Migratory' pain in the arms, more prevalent in the upper arms
5) General feeling of weakness in my arms
6) General feeling of malaise
I also have some facial symptoms (any thoughts about the relationship of this with PN would be appreciated).
7) Tight painful, jaw
8) Eyelid spasms
9) Numb lips
Any thoughts/ideas would be highly appreciated. Particularly if you could suggest some avenues of enquiry and/or which type of physician I should seek out next, especially since the neurology route did not prove to be too productive.
Kind regards and thanks again for your help!
Phil