Brief Answer:
Depends upon your NEUROLOGICAL EXAMINATION for next steps

Detailed Answer:
Good evening (on your end of the world)...Almost GOOD MORNING on mine! HA!

So, you need to understand a little anatomy of the skull to begin with. The skull is divided into 3 compartments with each one referred to as a FOSSA....that just means "shallow or hollow depression"....Now, what sits inside the skull? The brain...that's right. And if you look at a brain and you look at the skull that encloses that brain you'll see that these HOLLOWS of the skull (the FLOOR of the skull if you will)...are precisely where portions of the brain sit...it shouldn't XXXXXXX you that the brain fits into these shallows or hollows, right? Ok...the front of the brain sits inside the front most portion of the skull referred to as the ANTERIOR FOSSA....the middle of the brain sits in the MIDDLE FOSSA and the back end of the brain sits in the POSTERIOR FOSSA.

Take a look at the following LINK that has a cutaway of a skull with the different fossae (plural for fossa) named and color coded:

https://www.google.com/search?q=What+portions+of+the+brain+are+in+the+posterior+fossa?&client=firefox-b-1-d&sxsrf=ACYBGNS08zcerJ0MaAFBYmA5rlCDn0kYmA:0000&tbm=isch&source=iu&ictx=1&fir=sOIlRscnlC7HrM%253A%252CU2v5tNBY9waMgM%252C_&vet=1&usg=AI4_-kSTSXreiYuYpUOKE11JnV2wEA_0Gg&sa=X&ved=2ahUKEwjt7fCV78zkAhUFF6wKHUBuDdUQ9QEwAHoECAQQAw#imgrc=gUqd42lkim3-oM:&vet=1

POSTERIOR just means BEHIND or BACK OF something.....

And so the CT scan report is saying that there is mild and diffuse SHRINKAGE (atrophy) of the brain localized to the POSTERIOR FOSSA (the hollowed portion of the skull that is in the back of the head.....how's that for applying NEWLY FOUND KNOWLEDGE? LOL....

Now, newsflash....CT scans are not terribly great in terms of their accuracy and precision at detecting what's happening in the POSTERIOR FOSSA.....Therefore, as a neurologist....I almost never rely on what CT scans show when it comes to these sorts of reads until I know more about the patient in terms of their medical history, evolution of symptoms (i.e. what's been going on to prompt the CT scan in the first place), what medications they're taking, family history (i.e. does anybody in the family have similar symptoms etc)? Make sense so far?

Let me repeat what I just said. CT SCANS are good for evaluating GROSS anatomy of the brain that do not require detailed or precise topography or anatomical information since its resolution of images is great (at best 1 cm. in diameter) AND are not highly sensitive to the contents of the POSTERIOR FOSSA. If it looks like it's shrinking by CT scan but clinically the patient doesn't really demonstrate signs or symptoms of anything wrong with body function that would involve structures of the POSTERIOR FOSSA....then, chances are good there's not as much going on as the CT scan might have one believe.

Furthermore, if I really wanted to follow up with another imaging study that would be more likely to give me fuller and more accurate detail then, I would order an MRI of the brain and I might even go so far as to ask the radiologist to take fine cuts from say midbrain through the pons.....I would leave the MEDULLA out of the mix since if there were really any serious atrophy (shrinkage) in part of the brainstem I'd expect more clinical symptoms such as choking, swallowing difficulties, gait and ambulatory abnormalities making it tough for a person to walk without robotic like movements in the arms or legs, and a variety of other problems. You don't SEEM TO HAVE any of those problems but perhaps you haven't revealed ALL YOUR SECRETS to me? HAHA! So far, so good?

So basically you've had a CT scan of the brain showing what the radiologist feels is a MILD degree of shrinkage of the portion of the brain that sits in the "rear of the bus" so to speak. I'm not terribly impressed nor concerned about that finding (at least not yet) until I can perform a NEUROLOGICAL EXAMINATION on you or know that a neurologist has examined you and not found something more significant than a "small fiber peripheral neuropathy" because that diagnosis is not explained by what the CT scan states is happening.

Depending upon what I find on the neurological examination I might make a decision to obtain an MRI of the brain. Then, again, if your neurological exam is normal and does not give me the impression that anything is "missing" from the posterior fossa such as the cerebellum, tectum, fourth ventricle, and brain stem (pons and medulla) then, I might just to hold off on the additional studies until more information declares itself.

If I've provided useful and helpful information to your questions could you do me a huge favor by CLOSING THE QUERY and be sure to include some fine words of feedback along with a 5 STAR rating if you feel so inclined? Again, many thanks for submitting your inquiry and please let me know how things turn out.

Do not forget to contact me in the future at: www.bit.ly/drdariushsaghafi for additional questions, comments, or concerns having to do with this or other topics. I'm very interested in knowing how things evolve for you- especially if you get any testing done so do drop me a line...

This query has utilized a total of 51 minutes of professional time in research, review, and synthesis for the purpose of formulating a return statement.

---

Brief Answer:
Depends upon your NEUROLOGICAL EXAMINATION for next steps

Detailed Answer:
Good evening (on your end of the world)...Almost GOOD MORNING on mine! HA!

So, you need to understand a little anatomy of the skull to begin with. The skull is divided into 3 compartments with each one referred to as a FOSSA....that just means "shallow or hollow depression"....Now, what sits inside the skull? The brain...that's right. And if you look at a brain and you look at the skull that encloses that brain you'll see that these HOLLOWS of the skull (the FLOOR of the skull if you will)...are precisely where portions of the brain sit...it shouldn't XXXXXXX you that the brain fits into these shallows or hollows, right? Ok...the front of the brain sits inside the front most portion of the skull referred to as the ANTERIOR FOSSA....the middle of the brain sits in the MIDDLE FOSSA and the back end of the brain sits in the POSTERIOR FOSSA.

Take a look at the following LINK that has a cutaway of a skull with the different fossae (plural for fossa) named and color coded:

https://www.google.com/search?q=What+portions+of+the+brain+are+in+the+posterior+fossa?&client=firefox-b-1-d&sxsrf=ACYBGNS08zcerJ0MaAFBYmA5rlCDn0kYmA:0000&tbm=isch&source=iu&ictx=1&fir=sOIlRscnlC7HrM%253A%252CU2v5tNBY9waMgM%252C_&vet=1&usg=AI4_-kSTSXreiYuYpUOKE11JnV2wEA_0Gg&sa=X&ved=2ahUKEwjt7fCV78zkAhUFF6wKHUBuDdUQ9QEwAHoECAQQAw#imgrc=gUqd42lkim3-oM:&vet=1

POSTERIOR just means BEHIND or BACK OF something.....

And so the CT scan report is saying that there is mild and diffuse SHRINKAGE (atrophy) of the brain localized to the POSTERIOR FOSSA (the hollowed portion of the skull that is in the back of the head.....how's that for applying NEWLY FOUND KNOWLEDGE? LOL....

Now, newsflash....CT scans are not terribly great in terms of their accuracy and precision at detecting what's happening in the POSTERIOR FOSSA.....Therefore, as a neurologist....I almost never rely on what CT scans show when it comes to these sorts of reads until I know more about the patient in terms of their medical history, evolution of symptoms (i.e. what's been going on to prompt the CT scan in the first place), what medications they're taking, family history (i.e. does anybody in the family have similar symptoms etc)? Make sense so far?

Let me repeat what I just said. CT SCANS are good for evaluating GROSS anatomy of the brain that do not require detailed or precise topography or anatomical information since its resolution of images is great (at best 1 cm. in diameter) AND are not highly sensitive to the contents of the POSTERIOR FOSSA. If it looks like it's shrinking by CT scan but clinically the patient doesn't really demonstrate signs or symptoms of anything wrong with body function that would involve structures of the POSTERIOR FOSSA....then, chances are good there's not as much going on as the CT scan might have one believe.

Furthermore, if I really wanted to follow up with another imaging study that would be more likely to give me fuller and more accurate detail then, I would order an MRI of the brain and I might even go so far as to ask the radiologist to take fine cuts from say midbrain through the pons.....I would leave the MEDULLA out of the mix since if there were really any serious atrophy (shrinkage) in part of the brainstem I'd expect more clinical symptoms such as choking, swallowing difficulties, gait and ambulatory abnormalities making it tough for a person to walk without robotic like movements in the arms or legs, and a variety of other problems. You don't SEEM TO HAVE any of those problems but perhaps you haven't revealed ALL YOUR SECRETS to me? HAHA! So far, so good?

So basically you've had a CT scan of the brain showing what the radiologist feels is a MILD degree of shrinkage of the portion of the brain that sits in the "rear of the bus" so to speak. I'm not terribly impressed nor concerned about that finding (at least not yet) until I can perform a NEUROLOGICAL EXAMINATION on you or know that a neurologist has examined you and not found something more significant than a "small fiber peripheral neuropathy" because that diagnosis is not explained by what the CT scan states is happening.

Depending upon what I find on the neurological examination I might make a decision to obtain an MRI of the brain. Then, again, if your neurological exam is normal and does not give me the impression that anything is "missing" from the posterior fossa such as the cerebellum, tectum, fourth ventricle, and brain stem (pons and medulla) then, I might just to hold off on the additional studies until more information declares itself.

If I've provided useful and helpful information to your questions could you do me a huge favor by CLOSING THE QUERY and be sure to include some fine words of feedback along with a 5 STAR rating if you feel so inclined? Again, many thanks for submitting your inquiry and please let me know how things turn out.

Do not forget to contact me in the future at: www.bit.ly/drdariushsaghafi for additional questions, comments, or concerns having to do with this or other topics. I'm very interested in knowing how things evolve for you- especially if you get any testing done so do drop me a line...

This query has utilized a total of 51 minutes of professional time in research, review, and synthesis for the purpose of formulating a return statement.

---

Brief Answer:
Radiologists TEND to be talking about CONTENTS in this case

Detailed Answer:
Hello and thanks again for your return questions which are actually very good ones because it points up to some of medicine's lack of precision when dictating reports! LOL

But you're a nurse so you're part of the gang and we can slop around a little together....until you become the patient....then, the detail becomes important, doesn't it? HA!

Technically, if I talk about the POSTERIOR FOSSA then, I am referring to a specific anatomic location in a skull. It's the rearmost SHALLOW or HOLLOWED out area in the floor of the bony structure which when covered and BEAUTIFUL LOOKING with muscle and flesh we refer to as a HEAD! :)

However, when a radiologist talks about seeing ATROPHY OF THE POSTERIOR FOSSA he is PROBABLY talking about the brain structures such as the cerebellum and brainstem....make sense? Atrophy of the bony structure itself would probably be called in a different way....so I would interpret it in that sense...brain structures.

BTW, I do have a few EDS patients in my practice who have very similar symptoms to you as described in the second part of your response and I really wish I had XXXXXXX answers how to fix all of that....I would still move to get that MRI of the brain because CT scans of posterior fossa CONTENTS can be less accurate in their reading than the MRI of the same area. But if you factor in the EDS then, perhaps there is some "thinning" of material in that region since EDS is a connective tissue type of disease.....on the other hand what's the majority of the brain made of? FAT! So, not a whole lot of connective tissue there comparatively speaking...but nonetheless.

There could be some other metabolic considerations I'd also try in you if you feel things memory or cognitive function is not as sharp as before such as checking Vit. B12, Vit. D levels....I always like to see at least 450 for Vit. B12 and 60-80 for Vit. D in my patients aside from good electrolytes, normal LFT's and RFT's, normal TSH and FT4...etc. etc.

Feel free to write back if you have any other comments or questions about what's going and I can tell you also that one of my EDS just wrote and had her case accepted for that new TV program called CHASING THE CURE.....maybe you could try the Same? Can I come to California and be your NEUROLOGIST if they take your case? LOLOLOL!!

Be well young lady and write back for any more questions or comments....would love to hear from you and how you're doing after you get the MRI.....

Don't forget to leave a few kind words if I've helped you with anything more....Cheers my dear!

---

Brief Answer:
Radiologists TEND to be talking about CONTENTS in this case

Detailed Answer:
Hello and thanks again for your return questions which are actually very good ones because it points up to some of medicine's lack of precision when dictating reports! LOL

But you're a nurse so you're part of the gang and we can slop around a little together....until you become the patient....then, the detail becomes important, doesn't it? HA!

Technically, if I talk about the POSTERIOR FOSSA then, I am referring to a specific anatomic location in a skull. It's the rearmost SHALLOW or HOLLOWED out area in the floor of the bony structure which when covered and BEAUTIFUL LOOKING with muscle and flesh we refer to as a HEAD! :)

However, when a radiologist talks about seeing ATROPHY OF THE POSTERIOR FOSSA he is PROBABLY talking about the brain structures such as the cerebellum and brainstem....make sense? Atrophy of the bony structure itself would probably be called in a different way....so I would interpret it in that sense...brain structures.

BTW, I do have a few EDS patients in my practice who have very similar symptoms to you as described in the second part of your response and I really wish I had XXXXXXX answers how to fix all of that....I would still move to get that MRI of the brain because CT scans of posterior fossa CONTENTS can be less accurate in their reading than the MRI of the same area. But if you factor in the EDS then, perhaps there is some "thinning" of material in that region since EDS is a connective tissue type of disease.....on the other hand what's the majority of the brain made of? FAT! So, not a whole lot of connective tissue there comparatively speaking...but nonetheless.

There could be some other metabolic considerations I'd also try in you if you feel things memory or cognitive function is not as sharp as before such as checking Vit. B12, Vit. D levels....I always like to see at least 450 for Vit. B12 and 60-80 for Vit. D in my patients aside from good electrolytes, normal LFT's and RFT's, normal TSH and FT4...etc. etc.

Feel free to write back if you have any other comments or questions about what's going and I can tell you also that one of my EDS just wrote and had her case accepted for that new TV program called CHASING THE CURE.....maybe you could try the Same? Can I come to California and be your NEUROLOGIST if they take your case? LOLOLOL!!

Be well young lady and write back for any more questions or comments....would love to hear from you and how you're doing after you get the MRI.....

Don't forget to leave a few kind words if I've helped you with anything more....Cheers my dear!

---

Brief Answer:
Good morning young lady. MS highly unlikely in this scenario

Detailed Answer:
Thank you for your return comments and clarifications.

I definitely can see why you would be concerned over the findings of the CT scan and although I can't give you any 100% guarantees on anything that will ultimately pan out to be the case....I can say that brain disease such as MS is extremely unlikely in this type of scenario. Now, don't take this the wrong way or anything but in this case....your age into the 5th decade is CLEARLY one good reason we can lower the probability on something like MS....Secondly, MS like other demyelinating disease entities such as sarcoidosis and such do not present with symptoms of bilateral numbness in the upper extremities. And MS without demonstrating plaque lesions is much more uncommon than with....to be honest, CT scans are not great at looking for this sort of entity (especially noncontrasted)...but no matter.....in my opinion, what you're describing may have some relation to your EDS... You voice many of the same complaints I've heard in other EDS folks I have in my clinic so I think we should get that MRI done and if there is something concerning along the lines of demyelination I wouldn't hesitate getting it with gadolinium contrast.

I also always send my patients to get tested for their CREATININE and EGFR (Estimated Glomerular Filtration Rate) >60 but >50 in nondiabetics without renal disease is also acceptable before loading with XXXXXXX

See what that shows in terms of the posterior fossa contents and then, see if any of your symptoms can be correlated.

In terms of the risk of Chiari and your EDS the explanation is not so much in any "thinning" that CT is suggesting (though we have no confirmation on that point yet) but rather on the HYPERMOBILITY of the joints at the CRANIOCERVICAL junction. In other words there are a couple of important cervical spinal joints that are important in connecting the SKULL (you know, the bowling ball atop your shoulders? HA!) and the spinal cord (which is below the skull floor outlet called the FORAMEN MAGNUM. There are a couple of rather thick and sinewy ligaments that tie those 2 things together. Unfortunately, in EDS since the quality of the connective tissue produced by the body is less than optimal there is hypermobility of these joints, laxity of the ligaments (strapping head to neck basically) and this consequently leads to increased play in anything sitting in the posterior fossa so that with enough jostling and joggin' about of the head through normal everyday movements and what not....well, sometimes as the old saying goes, "things slip through the cracks...."...make sense? And that's when the risk of a Chiari starts to become elevated. Certainly, a Chiari malformation could explain a few of your symptoms such as headaches, pain/soreness in the neck and shoulders, even numbness in the fingertips due to undue compression upon the cervical spinal cord that feeds and subserves the upper extremities.

So again, a good MRI of the brain and the cervical spine if Chiari were on the table as a possibility (your neurologist would be the one to ultimately order that study) will settle a lot of these questions.

Here's a nice little discussion with good pictures to illustrate what I just talked about a moment ago:

http://www.mayfieldchiaricenter.com/chiari.php

I also agree that a small fiber sensory neuropathy (SFSN) is unlikely to be connected to anything CENTRAL from the brain. EDS is a recognized to be present and associated in patients with SFSN. What's not totally clear is whether it is clear and present risk factor and if so, by what means since our understanding of EDS really embraces the notion of connective tissue abnormalities more so than anything having to do with the generation of pain at the level of small fiber sensory circuits.

However, be that as it may, I would just ask if the neurologist has performed all of the usual suspects screening that could be related....for example your thyroid is good....B12 (>450?), Vitamin D (60-80?), how about your female hormones (those can also be involved in SFSN issues according to some of the latest research.....how about monoclonal antibodies, looking for anything that might pop up in a serum electrophoresis (SPEP) or in urine (UPEP)....how about heavy metal screening....you'd be surprised how many people I've found meandering around with sensory neuropathies or small fiber neuropathic pains in the hands and feet who have HIGH LEVELS of lead in their systems even though they never ate a single piece of paint in their lives! HAHA!......

Some of the stuff you find when you look can be amazing....all uncommon things, granted....but it just depends upon the clinician, the amount of clinical suspicion they have for certain disorders, and how many vials of blood, sweat, tears, or urine a person is willing to DONATE! LOL!!

BTW, are you aware of the EHLERS DANLOS SOCIETY website? Very interesting and well organized page that I've only become aware of recently because of my own patients. I found this commentary that some EDS folks who also have SFSN and body temperature regulatory problems made during the course of conversing about SFSN....maybe you've already seen it but if not...check it out and see if you also do any of these things to help with your body temperature that you mention:

https://www.inspire.com/groups/ehlers-danlos-syndromes/discussion/eds-and-small-fiber-sensory-neuropathy/

Since you mention that your symptoms of your SFSN seem to be getting worse with time I think trying to bring those problems under better control (for the immediate future) would be a place to start. I'm sure you're neurologist has looked into different medications for these things....

I think it's a good diagnostic workup to see an autonomic specialist so they can do a full and complete assessment. Things such as POTS and other insundry autnomic dysfunctions are also associated with EDS.

If there are concerns about dementia and such then, perhaps a good baseline neurocognitive workup would be reasonable to ask for in the future....but quite honestly, if I were your treating neurologist I would focus more energy and resources into getting your immediate symptoms of pain and discomfort under control, defining some things having to do with anatomy of the brain and spinal cord and seeing if any of that information can be useful to approaching the various complaints you're having and then, go to the neurocognitive side of things. So long as you continue work and stay active then, you're doing all you possibly can to stave off dementing illness of any sort. If you have a family history in first degree relatives then, I can't keep the secret from you (Ha!) that you are clearly at risk...but again, research has shown that better than any medication (cuz we ain't nuthin' too good yet), pills, or other voodoo magical herbs that they'll sell you from China, Tibet, and XXXXXXX Florida.....USING THE BRAIN and...ready for this.....PHYSICAL EXERCISE (even though it's going to hurt) on a regular basis are the 2 remedies that most help PEOPLE WITH DEMENTIA and they are the 2 things we can all do that is within our control to try and stave off the degenerative processes that result in that condition in many of us....

Look, the other day I was running around like a nut looking for my cell phone before leaving the house.....and by the way, I had everyone in the house running around looking for it as well.....know where it was? In my LEFT hand...Had it been in my right hand I would've seen it immediately cuz I'm right handed....but because I did something different by carrying it around in the left nondominant hand...my brain just turned off everything having to do with the fact that I was grasping and holding it and made me believe the damn thing was lost.....now you're a nurse, you tell me....is that the start of dementia??

Who knows! I think it's a funny example, how even if that really is signaling to me an early onset act of dementia...well, what the heck....there's a first for everything....and there will continue to be firsts in that regard because I'm getting ready to cross over the threshhold to another decade of life in a few months...and clearly don't work the same as they did when I was 20 or 30....USING THE BRAIN and PHYSICAL ACTIVITY/EXERCISE...even though it hurts sometimes.....BEST MEDICINE TO TREAT and PREVENT dementia.....

There you have it young lady.

Be well my dear and keep me in the loop when you get anymore information....we're virtual neighbors you know down here in XXXXXXX OH....just across that big cold frontier border!

Actually, when I was less than 2 digits old...we lived in Winnipeg, XXXXXXX then, Montreal....I was old enough to get lost in La Ronde during the Expo '67 Fair...I remember those days like they were yesterday....still have stayed in touch with some of my schoolmates and pals from those years and we've always promised we'd get a reunion together....we better hurry....it's been about 52 years since I've seen some of those clowns who I'm glad to report have not yet taken off their RED NOSES, BIG FLOPPY SHOES, or let go of all those BALLOONS...or those scary grins on their faces! LOLOLOLOL!!

Cheers!

This query has utilized a total of 135 minutes of professional time in research, review, and synthesis for the purpose of formulating a return statement.

---

Brief Answer:
Good morning young lady. MS highly unlikely in this scenario

Detailed Answer:
Thank you for your return comments and clarifications.

I definitely can see why you would be concerned over the findings of the CT scan and although I can't give you any 100% guarantees on anything that will ultimately pan out to be the case....I can say that brain disease such as MS is extremely unlikely in this type of scenario. Now, don't take this the wrong way or anything but in this case....your age into the 5th decade is CLEARLY one good reason we can lower the probability on something like MS....Secondly, MS like other demyelinating disease entities such as sarcoidosis and such do not present with symptoms of bilateral numbness in the upper extremities. And MS without demonstrating plaque lesions is much more uncommon than with....to be honest, CT scans are not great at looking for this sort of entity (especially noncontrasted)...but no matter.....in my opinion, what you're describing may have some relation to your EDS... You voice many of the same complaints I've heard in other EDS folks I have in my clinic so I think we should get that MRI done and if there is something concerning along the lines of demyelination I wouldn't hesitate getting it with gadolinium contrast.

I also always send my patients to get tested for their CREATININE and EGFR (Estimated Glomerular Filtration Rate) >60 but >50 in nondiabetics without renal disease is also acceptable before loading with XXXXXXX

See what that shows in terms of the posterior fossa contents and then, see if any of your symptoms can be correlated.

In terms of the risk of Chiari and your EDS the explanation is not so much in any "thinning" that CT is suggesting (though we have no confirmation on that point yet) but rather on the HYPERMOBILITY of the joints at the CRANIOCERVICAL junction. In other words there are a couple of important cervical spinal joints that are important in connecting the SKULL (you know, the bowling ball atop your shoulders? HA!) and the spinal cord (which is below the skull floor outlet called the FORAMEN MAGNUM. There are a couple of rather thick and sinewy ligaments that tie those 2 things together. Unfortunately, in EDS since the quality of the connective tissue produced by the body is less than optimal there is hypermobility of these joints, laxity of the ligaments (strapping head to neck basically) and this consequently leads to increased play in anything sitting in the posterior fossa so that with enough jostling and joggin' about of the head through normal everyday movements and what not....well, sometimes as the old saying goes, "things slip through the cracks...."...make sense? And that's when the risk of a Chiari starts to become elevated. Certainly, a Chiari malformation could explain a few of your symptoms such as headaches, pain/soreness in the neck and shoulders, even numbness in the fingertips due to undue compression upon the cervical spinal cord that feeds and subserves the upper extremities.

So again, a good MRI of the brain and the cervical spine if Chiari were on the table as a possibility (your neurologist would be the one to ultimately order that study) will settle a lot of these questions.

Here's a nice little discussion with good pictures to illustrate what I just talked about a moment ago:

http://www.mayfieldchiaricenter.com/chiari.php

I also agree that a small fiber sensory neuropathy (SFSN) is unlikely to be connected to anything CENTRAL from the brain. EDS is a recognized to be present and associated in patients with SFSN. What's not totally clear is whether it is clear and present risk factor and if so, by what means since our understanding of EDS really embraces the notion of connective tissue abnormalities more so than anything having to do with the generation of pain at the level of small fiber sensory circuits.

However, be that as it may, I would just ask if the neurologist has performed all of the usual suspects screening that could be related....for example your thyroid is good....B12 (>450?), Vitamin D (60-80?), how about your female hormones (those can also be involved in SFSN issues according to some of the latest research.....how about monoclonal antibodies, looking for anything that might pop up in a serum electrophoresis (SPEP) or in urine (UPEP)....how about heavy metal screening....you'd be surprised how many people I've found meandering around with sensory neuropathies or small fiber neuropathic pains in the hands and feet who have HIGH LEVELS of lead in their systems even though they never ate a single piece of paint in their lives! HAHA!......

Some of the stuff you find when you look can be amazing....all uncommon things, granted....but it just depends upon the clinician, the amount of clinical suspicion they have for certain disorders, and how many vials of blood, sweat, tears, or urine a person is willing to DONATE! LOL!!

BTW, are you aware of the EHLERS DANLOS SOCIETY website? Very interesting and well organized page that I've only become aware of recently because of my own patients. I found this commentary that some EDS folks who also have SFSN and body temperature regulatory problems made during the course of conversing about SFSN....maybe you've already seen it but if not...check it out and see if you also do any of these things to help with your body temperature that you mention:

https://www.inspire.com/groups/ehlers-danlos-syndromes/discussion/eds-and-small-fiber-sensory-neuropathy/

Since you mention that your symptoms of your SFSN seem to be getting worse with time I think trying to bring those problems under better control (for the immediate future) would be a place to start. I'm sure you're neurologist has looked into different medications for these things....

I think it's a good diagnostic workup to see an autonomic specialist so they can do a full and complete assessment. Things such as POTS and other insundry autnomic dysfunctions are also associated with EDS.

If there are concerns about dementia and such then, perhaps a good baseline neurocognitive workup would be reasonable to ask for in the future....but quite honestly, if I were your treating neurologist I would focus more energy and resources into getting your immediate symptoms of pain and discomfort under control, defining some things having to do with anatomy of the brain and spinal cord and seeing if any of that information can be useful to approaching the various complaints you're having and then, go to the neurocognitive side of things. So long as you continue work and stay active then, you're doing all you possibly can to stave off dementing illness of any sort. If you have a family history in first degree relatives then, I can't keep the secret from you (Ha!) that you are clearly at risk...but again, research has shown that better than any medication (cuz we ain't nuthin' too good yet), pills, or other voodoo magical herbs that they'll sell you from China, Tibet, and XXXXXXX Florida.....USING THE BRAIN and...ready for this.....PHYSICAL EXERCISE (even though it's going to hurt) on a regular basis are the 2 remedies that most help PEOPLE WITH DEMENTIA and they are the 2 things we can all do that is within our control to try and stave off the degenerative processes that result in that condition in many of us....

Look, the other day I was running around like a nut looking for my cell phone before leaving the house.....and by the way, I had everyone in the house running around looking for it as well.....know where it was? In my LEFT hand...Had it been in my right hand I would've seen it immediately cuz I'm right handed....but because I did something different by carrying it around in the left nondominant hand...my brain just turned off everything having to do with the fact that I was grasping and holding it and made me believe the damn thing was lost.....now you're a nurse, you tell me....is that the start of dementia??

Who knows! I think it's a funny example, how even if that really is signaling to me an early onset act of dementia...well, what the heck....there's a first for everything....and there will continue to be firsts in that regard because I'm getting ready to cross over the threshhold to another decade of life in a few months...and clearly don't work the same as they did when I was 20 or 30....USING THE BRAIN and PHYSICAL ACTIVITY/EXERCISE...even though it hurts sometimes.....BEST MEDICINE TO TREAT and PREVENT dementia.....

There you have it young lady.

Be well my dear and keep me in the loop when you get anymore information....we're virtual neighbors you know down here in XXXXXXX OH....just across that big cold frontier border!

Actually, when I was less than 2 digits old...we lived in Winnipeg, XXXXXXX then, Montreal....I was old enough to get lost in La Ronde during the Expo '67 Fair...I remember those days like they were yesterday....still have stayed in touch with some of my schoolmates and pals from those years and we've always promised we'd get a reunion together....we better hurry....it's been about 52 years since I've seen some of those clowns who I'm glad to report have not yet taken off their RED NOSES, BIG FLOPPY SHOES, or let go of all those BALLOONS...or those scary grins on their faces! LOLOLOLOL!!

Cheers!

This query has utilized a total of 135 minutes of professional time in research, review, and synthesis for the purpose of formulating a return statement.

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