Anyone here have dysautonomia, EDS, or mast cell disorders?

[emily123]

Hi everybody,

I am wondering if anyone here has dysautonomia because I have NCS and poor circulation.  (NCS dx'd at 15, now I'm 33).  

I am am guessing the fructose did some epithelial and neuronal damage.  Now, I'm wondering if many people with dysautonomia might be under diagnosed in terms of HFI. I have been through many things but think this might be the main culprit for me in terms of my faulty ANS.

I have always bemoaned having a condition (NCS) named after a symptom.  Very few people take it seriously - yet it can be devastating.  Since the beginning, I have been asking why.  No one had answers so I did they 23andme thing.  Boom.  Many answers.

I might go to the U of M genetics dept.  I don't want to do a provoked test.  I had to drink that horrible drink a couple years ago before a colonoscopy and I felt like I was going to die before it.  My BP and BS tanked.  People here should drink senna tea instead.  Frontier brand sells a loose leaf (no financial interest).

Emily

[charlie]

Hi Emily, can you translate conditions it would save having to rush to the medical dictionary each time.........

Welcome on board though, I hope we can help.

If EDS I Ehlers Danlos Syndrome then sherry selfe - answers forerin has kids with it.

[emily123]

Thanks for your reply.

Some names for dysautonomias:

NCS= Neurocardiogenic syncope (sometimes called neurally mediated hypotension or neurally mediated syncope)
POTS = Postural Orthostatic Tachycardia Syndrome
PAF = Pure Autonomic Failure

EDS is Ehlers Danlos (connective tissue disorder)

ANS - autonomic nervous system

[charlie]

Ok thanks, that clears that up then..........

So why do you think you have HFI? You need to fill us in a bit more about your symptoms etc, you obviously have a lot going on with your body, it may just be generally reactive to stuff and sugars in general can trigger a lot of things......

23&me do the genetic test, may be worth asking if they would have picked it up in their screening, I.think someone said they screen for a lot.

[colormist]

Hi Emily
I went to the genetics department at UofM and pressed for a genetic test for HFI. All I had to give was extensive family medical history/genetics and my blood. I didn't have to drink anything. I hear that they can do it by swab now, which might be even less stressful (if you're like me and faint when needles are present).

It sounds like you've already done the 23&Me test, which does test for HFI. Did that test come back negative for HFI or are you looking for a second opinion?

I'm not sure what any of those other conditions you listed are exactly. I haven't had any experience with them.

[emily123]

Hi Charlie and colormist. Thank you for replying to me!

I'll tell a little bit about my background. I'm 33 and have had medical issues my whole life. Despite that, I managed to get degrees. I feel very fortunate in that regard.

I think 23andme tests for it but I am not sure if it covers the whole shebang. I am really confused about the particular SNP and whether it is indicative or not. (23andme reports a different strand from dbSNP). My symptoms are strongly leaning towards HFI though.

I had failure to thrive and seizures as a kid until I got old enough to make food choices. Since then, I have largely avoided sugars. I have stretches of years where I never drank any juice. I passed out and threw up from eating a maple sugar candy once. I could barely walk or talk after prepping for a colonoscopy (from low BS). Doctors can never explain my low BS (I'm not diabetic or on insulin or anything like that). They have just said that I have reactive hypoglycemia (sugar makes me sugar lower) for the last twenty years. I used to feel really good when I would fast and/or eat mostly rice (which I think I will do again). I avoid gluten (or my skin goes haywire and my knees and pads of my feet swell).

My dad has gout and a fatty liver. Both my parents have elevated VLDL. My mother gains lots of weight when she drinks juice. I have gone to the ER a couple of times with gout attacks (after I drank cappuccino). I think I have chondocalcinosis of my knees, feet, and fingers. (I had to have knee surgery a couple of years ago, feels like there is sand in my joints at times). Knees are still subluxed and have been for almost four years.

I also have lots of heterozygous SNPs on my FEMV gene. I wonder if I have Familial Mediterranean Fever too. I read somewhere on this board that the two might be connected for some ppl with HFI. I have had many episodes (which required hospitalization that could definitely qualify as that - but perhaps did not live close enough to somewhere where a doctor might have actually thought of it as the cause of my symptoms).

The autonomic dysfunction stuff I have could be from nerve damage from excess sorbitol and fructose (and a few vaccine reactions I had (I'm one of the unlucky ones that has had GBS and other bad reactions)). My main symptom from the autonomic issues is orthostatic hypotension. I had a positive tilt table when I was 15. I have stayed away from those doctors though because none of their treatments ever helped or got to the root cause of the issues. (I dislike the idea of taking alpha-1 agonists (ritalin etc) to increase my blood pressure - won't do it.) The dx actually made things bad because insurance companies called it a pre-exisiting condition. (Syncope accounts for so many ER visits - they lose money on people like me).

I have elevated VLDL-3. I have been a vegetarian for several years (until recently) so it doesn't make much sense (except from the fructose standpoint). That might be causing my Raynauds. I also have a hypoplastic temporal artery in my brain - probably from the VLDL. I just found that out from a Nutreval test. It is nice to have a doctor that has gone through and done more sophisticated bloodwork.

I also have gadolinium *poisoning* from a MRI but that is another story altogether. It might have caused some epigenetic changes though that are making my overall health worse. I have to get chelation to remove it. It might take a year to get rid of. It should probably help with the VLDL too.

Do most people here get terrible headaches from fructose? I've been trying to not eat fructose this week and have found that my headaches are much better (when I avoid it). I also found out that a couple of my weird skin anomalies are better after a week of not eating it.

My goal is to find a doctor who will believe me and put my on preventative colchicine without much running around. I don't have the ER records. I could get them but it will take me a while. (The latest ER visit occurred after drinking two wine coolers on New Years Eve several years ago). I guess I could go through with a fructose test if I wind up with doctors who do not believe my story but that means I have to find a specialist who would know how to agree to do it. Since the onset of gadolinium toxicity (which I had to figure out myself), I have little credibility with doctors due to weird symptoms that can't be tied to any ordinary textbook disease. So, they go to their default, 'we don't know so it must be psych.'

My story has been pretty bizzare since the gadolinium because I have developed histamine/anaphylaxis and symptoms of scleroderma from that (which is what it does if it stays in the body). Before I knew about the gadolinium toxicity, a U of M doctor wrote terrible things in my medical record when I asked him to evaluate me for a mast cell disorder. I don't know if I should bother with the U of M because of people up their having access to his libel. I was charged lots of money by this particular doc who treated me like junk, said it was all in my head (treating me in a very condescending manner like people with psych conditions aren't even human), then didn't even bother to refer me further. If I were having psych issues, he should have at least offered some help for that.

I am hoping I have better luck with doctors in the future. I am depressed about how they have treated me so far. That is why I did 23andme. I figure it might get me towards finding the root cause of my issues so I can feel better. Seems like they assume I'm looking for disability or something when all I want is to feel better and put my three degrees to use.

Colormist - I really like your pinterest page. I bookmarked it. Thanks for making that available.

Emily

[colormist]

Hi Emily,
I'm sorry you're having such issues with U of M. My geneticist (though he didn't believe me) was fairly supportive and understanding after my diagnosis came back positive for HFI. My PCP at U of M was also pretty open-minded and willing to give me a referral.

As for your question about headaches. Aside from brain fog/sleepiness resulting from Hypoglycemia, I don't have any other head issues. Most of my pain resides in my stomach/kidneys.

I'm glad you found my pinterest page! I made the spinach pasta (at the top of the page) the other day. It was pretty good. I told my husband I was making a casserole. It wasn't until I started adding the cheese that I realized I was making fancy macaroni & cheese.

[charlie]

Blimey Emily, quite a history, who nicked my medical dictionary? I need it back again...............

Meaniejean is the one to search on here for Familial Mediterranean Fever, I have a feeling the gout is leaning more that direction too.

Meg gets a very bad headaches and earache when she reacts, she doesn't have HFI but CSID and FM. CSID covers multiple disaccharide intolerances and everyones reaction levels are different so that is another avenue to follow.

Where you go from here depends on the old question we frequently ask newcomers, Why do you need a diagnosis? If it is for insurance to get treatment then yes, go ahead for tests but otherwise do it by elimination, trial and error and see what happens. To trial HFI you must completely cut out all fructose and related products for a good few months and then slowly add things in to see how you react. Cheats and shortcuts will only add confusion. When you find your safe level then stick to it and life should be just fine. Cheat and you will regret it if you have a sugar related issue, if not then you have just had a jolly good detox and can move on.

Good luck, let us know how you go.

[emily123]

Thanks guys!

I think the Familial Mediterranean Fever dx might be the most useful, so I can get on preventative colchicine. I guess I don't need dx for HFI (unless I'm in the hospital and they keep feeding me high fructose foods or IVs with fructose or something).

I have to figure out which type of glucose tablets to get. I tried one but it had maltodextrin and gave me a migraine.

Maybe I should order some dextrose for when I am hypoglycemic. Do many people on here use that?

Emily

[charlie]

Shhhhh, please don't wake The Bill, we have just got him settled..................

Be careful with glucose / dextrose tablets as they are likely to be processed with other stuff in. Try to source good quality dextrose powder and buy a few packets at a time for back up and then just carry a small pot around with you maybe with a label attached to it for instructions to anyone, you should only need a couple of teaspoons to do the trick. But better practice is to carry a protein snack too and try to use that first if possible, if you do end up with a reaction or caught out. I go everywhere with milk for Megs but I don't know if you are OK with milk. Crackers and cheese are good.

[colormist]

Seconding the cheese and crackers idea. I also use potato chips or milk. I also keep a roll of smarties (the dextrose ones, not the chocolate ones) in my purse, desk, and car for absolute emergencies. They usually tide things over until I can get to proper food.

[emily123]

I will have to get some of those smarties! I'm glad to hear about that. Are there any other types of candy that are okay?

Come to think of it, smarties are the only candy I consistently liked to eat on Halloween! 

I ordered some dextrose. I am noticing that my headaches are getting much better since I am attempting the low fructose diet. I ate cabbage today though and got a headache about ten minutes later. I am going to use the cron-o-meter site you mentioned in another thread here to track my symptoms.

I also purchased some blood sugar strips and a meter. I feel like I can tell what my sugar is but I think a diary should help me to know for sure.



Emily

[colormist]

The candy thing has gotten a bit hairy in the past few years. Wonka candy company used to make a TON of dextrose candies that were safe. Sadly, they've changed their recipe over the years and started adding "natural flavors"--which I can only presume is fruit juice.

I'm still uncertain on smarties being 100% safe, but they do tend to tide me over for 15-30 minutes until I can get some real food in my belly. Anything to stave off a hypoglycemic attack is helpful.