I Can't Find Anyone Else Who Gets These Sores With Pots/dysauto

[Tarastomsgirl]

Hi I have a couple questions

I've was diagnosed with POTS/Dysuato/NCS 7 years ago. Over the years I've become progessively worse. I cannot work (yet don't qualify for disability) and I've been to every doctor imaginable. Now they think I have a connective tissue disease on top of it or some kind of autoimmune disease. I get these sores on my tongue and bumps on my fingers that no one can figure out. They told me it looks like geographic tongue and it does but when I have them, which is all the time now, I feel SO sick..I've been trying a gluten free diet for the past two weeks but not much results as far as that goes. I actually felt GREAT the first 5 days almost all my symptoms went away including my 7 years of vertigo that I've had 24/7 but then one day it just came back

Also does anyone else experience constant body vibrations with extreme body weakness. I feel like I'm going go collapse constantly all day everyday. I'm also pale all the time. Lips white face pale I look sickly like a cancer patient.

[Dizzysillyak]

Great pics .. Lol .. When you say you went gf, does that mean you're eating gf breads, etc ? If so,

these aren't regulated for gluten so you may, probably, are still getting gluten.

You.ll need to check all your foods, toothpaste, drinks, laundry soap, etc etc for cross contamination.

The fact that you felt better originally imho is a sign that you need to be gluten free.

Also, many people who respond to one food group will also respond to others. Casein, egg, corn

Soy and all chemicals are common food intolerances and may or may not be a problem. You can be intolerant

of other things too tho since we're all unique.

Tc .. D

[potsgirl]

When I get something that the local doctors can't figure out, I usually head to my neurologist (who specializes in POTS) at the Mayo Clinic in Scottsdale, AZ. There's also a clinic in Rochester, MN, and the Cleveland Clinic. They all have experts that could probably help you out. Have you seen a specialist for dysautonomia yet? I didn't get diagnosed until I went there. Just a suggestion. I hope you find out what's causing your tongue and finger issues soon, and that it's something you can work with easily.

Let us know what you find out, and best of health to you.

[Tarastomsgirl]

HI , I've not eaten any gluten free breads I'm on a whole foods diet, organic gluten free foods. No breads, no gluten free pastas etc. I also eliminated dairy but my tongue is once again flairing up. I changed my soap and my toothpaste is also gluten free. So I'm at a loss.

I have been formally diagnosed and seen many neurologists to no avail. I've seen at lesat over 35 doctors who haev not been able to help me and can't explain these issues. I was diagnosed in 06 officially with a + TTT. I'm now being refered to Mayo Clinic in Jacksonville and it was a 4 month wait when I called so I made the appt but it isn't till Dec. I'm just wondering if any of this looks familiar to anyone no one can seem to figure this out. I had them biopsied several times (omg having ur tongue biopsied is excruciating!) and it comes back chronic inflammation. I'm at a loss.

For the most part I'd call myself a "functional" Potsy person, even accomplished culinary school working in kitchens over 100 degrees at one point but the past month or so I've been sicker than I've ever been. Not being able to get out of bed, constantly shaky and weak, woozy and overall terrible and its really frustrating! I was just going to try my hand at getting a pastry chef job and bam this happen!

[Dizzysillyak]

Hi again,

I initially looked at this thread because of the rash associated with celiac disease. DH .. But got intrigued

when you mentioned gluten .. I'm a sucker for a good gluten free story .. Lol

Were you cooking with gluten in that school ? I don't think I react to airborne gluten, but i know some do .

Also, I did some googling and found that for some this is fungal, a b deficiency or an allergy.

Fwiw ..I have many diagnosies in addition to my dysautonomia and from what i've seen here many, most ?, of

us do. The only things, I.ve seen in common are allergies and blood glucose issues.

Tc .. X

[Tarastomsgirl]

hello, yes we were certinaly cooking with gluten! After I graduated thats what prompted me to go gluten free. It kills me that for 5 days I felt amazing, no dizziness not paleness etc then one day I just felt that weird off feeling we get and since then its been a steady decline no matter how much I eliminate from my diet and its driving me mad! I was suppose to have an interview sat for a cake decorating position but I don't think its happening now . I suppose I could be allergic to something else , ex I ate gluten free cheeto's at a babyshower sat and right after I ate my mouth begain to burn some and in my nose too. I've had that before but I couldn't pinpoint what was causing a reaction. Perhaps tho its a food dye but I know not to eat those now. .At the moment the vibrating, sores on my tongue and weakness are my most prominent issues, perhaps if I was cross-contaminated and this is a reaction, but it has been going on almost a week now..arg lol! I appreciate you guys entertaining me in this topic so far

[Dizzysillyak]

I'm not sure how often people get dramatic results like you did from eliminating gluten. I did and

I know quite a few people who did, but I also know a few celiacs who eat gluten without reacting.

go figure ...

In sept 2006, 1 year post gfcfsfef, etc, I started walking normally and I felt totally healthy for the next month.

During that time I wasn't being as careful as I am now. I ate out and was eating those gf foods. And I've had good

days but no good months ever since. I'm looking at my foods and supplements again .. Bleh ..

I've read that we get more sensitive to gluten once we're not eating it anymore.

Have you tried treating for candida ? Or tried a b12 sublingual ? Candida and nutritional deficiencies

are commonly found with allergies. I get sores on my tongue all the time from too much oj, walnuts, etc.

Hope you feel better soon... D

[Dizzysillyak]

Also, it can take awhile to get the gluten out of our systems. I used to have facial twitching for

3 weeks afterwards but that finally stopped ... Hmmm, it just hit me. I wonder if that's because my b12 is

high now and was low for years.

From what i've read, the vibrating could be from gluten or other foods high in glutamates (nuts, soy, corn)

or caffeine. Or hfcs ..

Gluten, caffeine and hfcs do this to me. I wish i'd realized years ago that the buzz I got from eating donuts and

drinking coffee wasn't normal ... Lol

[Katybug]

OMG! I can't believe it! I get the bumps on my fingers too! And, I also have not been able to find others who have them or get a diagnosis. I do not experience the tongue thing though. I have searched the internet high and low looking for pics of these finger bumps to no avail. (The closest thing I've seen have been some pics on lupus websites but there not quite the same.)

I started getting the bumps when I was a sophomore in high school. I had what seemed to be a bad viral infection (mono/flu-like almost but tested negative for mono) except that I also got a rash all over my body and these bumps on my fingers. We (mom and I) went to multiple docs and none of them could give a better diagnosis than "an allergic type reaction to the viral infection". The bumps aren't horribly painful unless I bump them, then they can be a little sore/pinchy. They don't blister or change, they just appear and then disappear usually about 2-3 weeks after onset. I get these bumps every time I get a viral infection now (flu/colds). I occassionally get the bumps when I don't have any other signs of infection but I always assume I was exposed to something and just didn't get fully symptomatic. I have shown the bumps to docs over the years (when I get them) and have never gotten an answer.

My POTS specialist and I discussed the finger bumps, along with other suspicious things in my history, and he is now sending me for a battery of autoimmune tests and various tests for mast cell disorders. Hopefully we find some answers and I will update this thread if anything comes of it.

Can you link the original onset of these bumps to a particular event (illness/medication/etc.)? I almost feel like if we solve the finger bump mystery, we'll solve my whole medical mystery.

[lieze]

I get the sores on the tongue periodically.

It's not always like that.

My mom says hers gets that way too.

[Tachy Phlegming]

You might want to try posting on a Behcet's disease forum. They're the mouth sore people. They should have been examined for conditions with tongues similar to like that so even if it's not that, they may be able to tell you a whole range of conditions to have Doctor number 38 (or whatever number you're actually up to) rule out...

[Tarastomsgirl]

You might want to try posting on a Behcet's disease forum. They're the mouth sore people. They should have been examined for conditions with tongues similar to like that so even if it's not that, they may be able to tell you a whole range of conditions to have Doctor number 38 (or whatever number you're actually up to) rule out...

I've been tested for Bechets twice..both neg cause i thought of that too.. I've also been tested for Lupus, Aids, HIV, Herpies, Parasites and there are probably more im not remembering

[Tarastomsgirl]

OMG! I can't believe it! I get the bumps on my fingers too! And, I also have not been able to find others who have them or get a diagnosis. I do not experience the tongue thing though. I have searched the internet high and low looking for pics of these finger bumps to no avail. (The closest thing I've seen have been some pics on lupus websites but there not quite the same.)

I started getting the bumps when I was a sophomore in high school. I had what seemed to be a bad viral infection (mono/flu-like almost but tested negative for mono) except that I also got a rash all over my body and these bumps on my fingers. We (mom and I) went to multiple docs and none of them could give a better diagnosis than "an allergic type reaction to the viral infection". The bumps aren't horribly painful unless I bump them, then they can be a little sore/pinchy. They don't blister or change, they just appear and then disappear usually about 2-3 weeks after onset. I get these bumps every time I get a viral infection now (flu/colds). I occassionally get the bumps when I don't have any other signs of infection but I always assume I was exposed to something and just didn't get fully symptomatic. I have shown the bumps to docs over the years (when I get them) and have never gotten an answer.

My POTS specialist and I discussed the finger bumps, along with other suspicious things in my history, and he is now sending me for a battery of autoimmune tests and various tests for mast cell disorders. Hopefully we find some answers and I will update this thread if anything comes of it.

Can you link the original onset of these bumps to a particular event (illness/medication/etc.)? I almost feel like if we solve the finger bump mystery, we'll solve my whole medical mystery.

yes exactly they don't change, they come and then go back down. They never blister or get pus or anything but they hurt to bump, mayyybee itch a little sometimes but rarely and just come and go. SO WEIRD! All of my symptoms I can trace back to Sept of 2004 after I went to Mexico. I was on my honeymoon and I got sick one night, nothing terrible but I felt nauseous and just blah. I chalked it up to seasickness but we were in calm seas and it was 5 days into the cruise and I was fine prior. I never ate or drank anything in mexico but they think I could have touched my eyes or put my hands in my mouth not thinking and caught something that way. About a week or so after I came home I was so deathly sick I didn't get out of bed for 4 months and lost 30 lbs. From there it was a downwards spiral of anxiety, tachy, palps, paleness and so on and so on till my diagnosis in 06. I have had the bumps biopsied twice and it came back as just inflammation. Shocker right. My rhuemy thinks its some sort of autoimmue issue (obviously) some sort of inflammation disease which would explain the tongue too. I've often seen a white coating on my tongue and suspected a yeast invasion of sorts in my body but I can't prove it and the docs have never brought it up

[lieze]

Yep I cycle between the white patches, clear tongue, then the ulcers is how I would describe them.

I have some right now on the tip of my tongue and the change was stress!

Just the other day they weren't there but I had the white coating.

I've had a bad taste in my mouth for about the last week also.

I get paranoid to speak at all when it's like that.

If it tastes horrible I figure it must smell horrible too.

[PotsMom]

Tarastomsgirl,

I am so sorry for all of the trouble you are having. Though I know there are likely many causes behind dysautonomia, I definitely believe autoimmune is one of the big ones. There's so much autoimmune history in my family - no doubt in my mind that that is at the bottom of cause for both of my dysautonomic kids. We can all too well understand the frustration of it all and how disabling it can be!

This may not be helpful for you but thought I'd pass it on just in case it can be of any help at all. Both of my kids get a lot of canker sores, and my daughter gets them in clusters that are very, very painful. I had searched trying to find relief for her when she is going through this and in the process have learned that one thing that is a trigger for many is sodium lauryl sulfate, SLS, an ingredient in most toothpastes and is from what I understand the ingredient that causes it to foam. While that is not the only trigger for my daughter, we did find that after she switched to Squigle, one we ordered that does not include this ingredient, she had noticeable improvement in the frequency of these sores. I know that what you have is not the same as canker sores but just thought I'd pass this on in case it is something you want to try. I completely understand the desperation of trying to find small or large pieces that help with any of the myriad of symptoms that eat away at one's ability to be functional!

My thoughts are with you!

[anna]

Have a look at: http://www.immunedisease.com/about-pi/types-of-pi/selective-iga-deficiency.html it might be of use, as your Dr.'s mentioned a yeast infection!

[sue1234]

If you can pinpoint it to a trip to Mexico, sure sounds like you at least need to be treated for a possible parasite. I would assume you did the antibiotic thing right afterwards, thinking it might be bacterial. But, a parasite can be picked up in foreign countries.

[sandymbme]

I have had the rash for gluten, HD, and I can tell you from firsthand experience it is the worst itch you will have ever known. I literally clawed hunks of skin off my buttocks (the rash usually appears in a bilateral manner, so equal on both sides, of your buttocks, legs and/or arms) before it healed. It responds to NOTHING, I tried everything, benadryl, creams (antibiotic, fungal, antihistamine), you name it. So for what it is worth, I don't think you have the rash associated with celiac. That being said, however, food allergies are different from celiac, and a wheat allergy could cause a reaction, but should respond to antihistamines. From a dysautonomia perspective, I think anything is possible, given how poorly they understand how it all works!

Sandy

[Katybug]

Tarastomsgirl,

I am about to go for a battery of blood work (although I think Sue1234 has me beat if you've seen her 21 viles of blood thread ). If anything comes up, I'll let you know. One of the tests that I have had in the past that showed that there was definitely something wrong (although it isn't specific to just one disease) is my C4a factor. This is part of the "complement system" of your immune system. It is considered an inflammatory marker. (Normal is under 2000, mine was over 59,000.) When I showed my POTS doc this old test last week, he was right on getting me a full work up for autoimmune everything. I know its not a specific diagnosis of anything but it makes me feel better every time a test can at least document/prove I'm not making it all up. I also researched what C4a does/can do and it turns out that it does cause degranulation of mast cells thus precipitating inflammation, histamine rx, and anaphalaxis. So, I'm really curious if I will show up with mast cell issues. It would definitely explain the finger bumps. If your up for another blood test, getting a work up on your complement system might at least give you some more documentation.

As a side note, I did have a yeast infection in my mouth when I was taking three antibiotics to treat my Lyme. Now that I think about it, it DID look very much like your tongue picture except there was more white on my tongue but I did have the patchiness too where it looked like my tastebuds were missing. The doc gave me an oral anti-yeast pill and it cleared up in a couple of days. If you haven't gone that route yet, it might be worth it as the treatment was easy and would at least rule out another thing on the list.

[Tarastomsgirl]

Thanks guys, i seem to be getting progressively worse now. I've been to the ER 2 times in the past 3 weeks, I've lost 12 lbs in 2 1/2 weeks yet they aren't alarmed. I'm so weak and shakey i can't get out of bed hardly and when I do its for very short periods of time. I feel like I'm dying. I was in the ER fri and not 2 hours after being released with a diagnosis of general weakness and a script for valium 4x's a day (yeah right!) I started having bloody mucus in my stool. Once again called back ER and my doc, neither seemed concerned told me to take 1000mg of cipro a day and if I hemmorage call an ambulance..really? So i haven't felt better at all since then and I can't get rid of this weakness and vibrating feeling thats overwhelming. I'm also SO tired, like sleeping all the time and my inlaws have now taken my daughter as I can't care for her. I feel like none of the doctors are listening to me no matter how much I tell them something is wrong. I don't know if I can hold out for Mayo Clinic in dec!

[sue1234]

Sounds like you should try and get in with a gi doctor real soon. Do you have access to one?

[lieze]

Saying a prayer for you right now.

I hope that some how through some route you find the help you need.

My back up is always just going and asking to be admitted to a hospital like Cleveland Clinic.

Do you have anything like that near by?

[Katybug]

Sorry you are in such a bad way. Many of us have been there and just know that you do have support and that most of these ridiculously bad episodes of POTS do pass, albeit not fast enough.

I don't know where you are located but there is a list of doctors that specialize in dysatonomia broken out by state in the POTS Place link on this website. Maybe you can find a doc who is a specialist in your area that can help you while yor waiting for Mayo.

I have bouts of vomiting and diarrhea that occassionally result in some blood from the strain on my GI tract and I know that assaulting my GI tract with antibiotics would make things worse. Do they actually believe you have a GI infection?

Hope you find help soon...

[anna]

Oh my, Tarastomsgirl, your ER Dr.'s are horrid.

I was just reading on an other site about: gastric parietal cell autoimmune antibodies something to do with B12 anemia that leads to pernicious anemia not showing up in normal normal blood tests, thus it can be missed!!

• Antibodies can form against the cells that produce intrinsic factor. The cells then die, leading to B12 deficiency and anaemia.
  
• Stomach cancer and ulcers can take up so much room in the stomach that there are too few cells left to produce intrinsic factor.
  
• Diseases of the small intestine, fish tapeworm and the after-effects of bowel surgery can all result in the surface of the small intestine being too small to absorb B12 and intrinsic factor effectively.
  

What are the symptoms of this type of anaemia?

If a person is otherwise healthy, it can take some time for the signs of anaemia to appear.

• The first symptoms will be tiredness and palpitations (awareness of heartbeat).
  
• Shortness of breath and dizziness (fainting) are also common.
  
• If the anaemia is severe, it can result in angina (chest pain), headache and leg pains (intermittent claudication).
  
• Red, sore tongue and mouth.
  
• Weight loss.
  
• Diarrhoea.
  

Some people with vitamin B12 deficiency will experience symptoms in their nervous system first, such as:

• altered or reduced sense of touch
  
• less sensitivity to vibration (inability to feel the vibrations of a tuning fork)
  
• colour blindness
  
• tingling in the hands and feet
  
• muscle weakness
  
• difficulties with walking and coordination
  
• psychological symptoms, such as memory loss, confusion and depression.
  

[lieze]

Anna-that sounds exactly like what I experience.

Okay here is the question.

Does this stop at the tongue or could our whole GI systems get affected this way?

Could it be why she is having the weight loss and bloody stool.

Sounds like getting in and looking at that GI tract mucousa would be a good idea.