- Messages
- 16
- Location
- Central Illinois, USA
I won't go into all the boring backstory because if I did this post would be a lot longer than it is! I was diagnosed the classic ME/CFS differentiating type in 2013 (suffered from symptoms on/off years prior). I have been managing it pretty well over the years with activity pacing and some 'go to' supplements to help recover from crashes.
In the Summer of 2018 I started developing a new cluster of sporadic symptoms, first I started having labored breathing, then progressively followed by hearing changes (muffled hearing), light sensitivity, nausea, neck pain and then headaches. Symptoms would be cyclical and sporadic, often times worse when sitting as opposed to standing. I had a proactive primary doc that ordered yearly brain MRI's since 2016. In 2017 the MRI showed intracranial hypotension but I was not symptomatic, and my then neurologist was clueless. The subtle MRI changes were dismissed until I became symptomatic. After another MRI in the fall of 2018 showed worsening hypotension, I searched for and found a local neurologist who understood the problem (several others were unbelievably clueless). After several failed attempts of getting me help in the Chicago area (I live in central Illinois), I was able to get into Mayo in April 2019 after some insurance changes.
Mayo did a full spinal MRI, autonomic testing, and a dynamic CT Myelogram. A CFS leak did not show on the myelogram, but Mayo's CFS expert said the brain changes subsequent to a leak were clearly seen on all my brain MRI's with progressing severity. Mayo attempted a high volume blood patch at seven suspected points along the spine using information from the spinal MRI. I was told there would only be a 30% chance of success. It did not succeed, even though I temporarily (for a few days) had what I believed was a rebound headache and some relief. Two doctors from Mayo believe I a fistula between the dura and a small vein. My next trip to Mayo, if I can muster up the strength to go, will be for a digital subtraction myelogram (DSM), which they said will have a 90% chance of locating the leak.
The problem is, I have developed severe fatigue and new weakness, especially noticeable in my upper arms, abdomen, and upper legs, with the worse being in my arms. Also increased PEM with easy crashing. Much worse than before and incapacitating. I do have moments after a night's sleep where I do have some renewed energy but I must be very careful that I do not overdo it, or I will crash and be incapacitated. The fatigue got much worse several days after the CT myelogram and the patching. I have a theory that the brain 'settled' a bit more after the CT myelogram and patching and got 'cranky.' The fatigue and weakness are becoming a very hard challenge. and I am concerned they are going to interfere with the DSM which involves two days and general anesthesia.
Th reason for my post is to sort out some thoughts and symptoms. I don't believe that my ME/CFS is primarily due to the hypotension, just possibly greatly aggravated by it. The reason is, I have been dealing with ME/CFS for many years and have had muscle biopsies showing small fiber neuropathy along with some vague mitochondrial issues (cox deficient fibers), even though some genetic sequencing showed no mutations per say. I do have peripheral neuropathy, gastroparesis, unrefreshed sleep and other symptomatology similar to many with ME/CFS. One Mayo doctor said that CSF leaks do not cause fatigue, nor would the testing, however I have talked to a few others with leaks, including reading some case papers, that say leaks can cause severe fatigue.
Although I have never heard of it, does anyone know if the radiation from the CT scan (myelogram) can worsen fatigue in some? Another plausible possibility is that the patching procedure caused spinal inflammation and aggravated my CFS/ME? Or it could be just the progression of the leak itself? The latest CFS/ME crash I experienced is lasting longer and much worse than any in the previous decade plus none of my go to supps or strategies that I have used successfully in the past are working. I am on the cusp of having to make some big decisions with little or no information, and the docs haven't been much help. Any ideas would be appreciated. Thanks
In the Summer of 2018 I started developing a new cluster of sporadic symptoms, first I started having labored breathing, then progressively followed by hearing changes (muffled hearing), light sensitivity, nausea, neck pain and then headaches. Symptoms would be cyclical and sporadic, often times worse when sitting as opposed to standing. I had a proactive primary doc that ordered yearly brain MRI's since 2016. In 2017 the MRI showed intracranial hypotension but I was not symptomatic, and my then neurologist was clueless. The subtle MRI changes were dismissed until I became symptomatic. After another MRI in the fall of 2018 showed worsening hypotension, I searched for and found a local neurologist who understood the problem (several others were unbelievably clueless). After several failed attempts of getting me help in the Chicago area (I live in central Illinois), I was able to get into Mayo in April 2019 after some insurance changes.
Mayo did a full spinal MRI, autonomic testing, and a dynamic CT Myelogram. A CFS leak did not show on the myelogram, but Mayo's CFS expert said the brain changes subsequent to a leak were clearly seen on all my brain MRI's with progressing severity. Mayo attempted a high volume blood patch at seven suspected points along the spine using information from the spinal MRI. I was told there would only be a 30% chance of success. It did not succeed, even though I temporarily (for a few days) had what I believed was a rebound headache and some relief. Two doctors from Mayo believe I a fistula between the dura and a small vein. My next trip to Mayo, if I can muster up the strength to go, will be for a digital subtraction myelogram (DSM), which they said will have a 90% chance of locating the leak.
The problem is, I have developed severe fatigue and new weakness, especially noticeable in my upper arms, abdomen, and upper legs, with the worse being in my arms. Also increased PEM with easy crashing. Much worse than before and incapacitating. I do have moments after a night's sleep where I do have some renewed energy but I must be very careful that I do not overdo it, or I will crash and be incapacitated. The fatigue got much worse several days after the CT myelogram and the patching. I have a theory that the brain 'settled' a bit more after the CT myelogram and patching and got 'cranky.' The fatigue and weakness are becoming a very hard challenge. and I am concerned they are going to interfere with the DSM which involves two days and general anesthesia.
Th reason for my post is to sort out some thoughts and symptoms. I don't believe that my ME/CFS is primarily due to the hypotension, just possibly greatly aggravated by it. The reason is, I have been dealing with ME/CFS for many years and have had muscle biopsies showing small fiber neuropathy along with some vague mitochondrial issues (cox deficient fibers), even though some genetic sequencing showed no mutations per say. I do have peripheral neuropathy, gastroparesis, unrefreshed sleep and other symptomatology similar to many with ME/CFS. One Mayo doctor said that CSF leaks do not cause fatigue, nor would the testing, however I have talked to a few others with leaks, including reading some case papers, that say leaks can cause severe fatigue.
Although I have never heard of it, does anyone know if the radiation from the CT scan (myelogram) can worsen fatigue in some? Another plausible possibility is that the patching procedure caused spinal inflammation and aggravated my CFS/ME? Or it could be just the progression of the leak itself? The latest CFS/ME crash I experienced is lasting longer and much worse than any in the previous decade plus none of my go to supps or strategies that I have used successfully in the past are working. I am on the cusp of having to make some big decisions with little or no information, and the docs haven't been much help. Any ideas would be appreciated. Thanks