ajw4790

Hiya!

So, I am not really sure about what all of them mean, but I have had some of that testing... I have never really got an answer to what my abnormal results mean. So, after all your research Firewatcher you can tell me!

My IgG is normal. Serum Lamda light chains are low, and the Kappa/Lambda ratio is high.

Where that leaves me, I don't know...

Just a fancy way of saying I am anemic???

Whatcha think?

Hi,

I know it has been mentioned on here before, but I wanted to bring it up again that D3 is derived from lanolin (sheep). So, some people can be sensitive to it because of its origin. D2 is derived from a fungal source, and can cause less a reaction.

I think this is the article/thread that is being referred to...

http://dinet.ipbhost.com/index.php?showtop...mp;#entry122993

Hi,

I have been wondering how many of us have quirky things about us that 1.) Either we never knew anything different than our quirkiness and later found out that not everyone is like that, and dysautonomia is to blame. 2.) Have known you have quirky traits, but have no real explanation. (drs. could never explain it ) But, that these traits could be related to medical conditions.

Not all the symptoms that we, as people with dysautonomia, have are listed on an info sheet for dysautonomia. Many drs. may not even fully acknowledge these symptoms, but because so many others with the same diagnosis have similiar symptoms it is often hard to ignore them.

I thought it would be interesting to discuss any of these quirky symptoms that either you have learned are related to dysautonomia or have wondered if anyone else has the same symptoms/reactions....

For example: This is probably most applicable to those who have had dysautonomia symptoms the majority of their life...

I have been curious if anyone else has always had a problem with the motor function of the muscles in their face???

I have never been very good at all at smiling, sticking tongue out, doing things with my eyes, etc... on command. It seems like both the proprioception of where my face is in space is off, along with the signal between my brain and face seems slow, and like it needs help. When I was younger I could not do some of these things without a mirror (needed visual feedback). It is like the coordination of movements did not come easy to me. I also had serious difficulty swallowing pills. I was probably at least 16 y/o before I could get the movements coordinated enough, AND not set off my overly active gag reflex.

I also tend to be uncoordinated and clumsy, especially with orchestrated movements. (i.e. I don't mimic dances, hand gestures, tasks at work or school very well).

Does anyone else have a similiar experience???

Anyone else have a quirky trait you have lived with, "just" to find out it was due to dysautonomia???

Wow! It sounds like ya'll have so much going on! I would be beyond exhausted! I too had been wondering what in the world happened to Gilbert??? I hope he is no longer bothering you!

Thanks for your responses!

Thought I would update. My stomach did finally settle down to more of my norm. I have wondered for a while about my gallbladder... I need to see if I can get it checked.

Of all the choices, I guess the dehydration sickness sounds the most likely. I was drinking quite a bit, but I am sure that my body still wanted more.

At least things are back to my "norm".

Welcome! Good luck with your appointment or finding another close by specialist!

Possibly because Type 1 Diabetes is an autoimmune disorder, and POTS can be caused or triggered by autoimmune diseases. And with Diabetes there is the liklihood of autonomic neuropathy which can then present as POTS.

Thanks for all your replies! I had wondered how reputable it was when I couldn't find much on it... Also, when I couldn't quite figure out what HPU stood for...

But, I have to say, whatever they are describing is one of the most accurate descriptions of "me" that I have seen when looking at descriptions of diagnoses!

It continues to make me curious!

fibro. pain or due to nutritional deficiency?

Hi,

After reading about your reaction, I wondered about the mercury levels etc. that can be found in shrimp. Could that have triggered an episode? Histamine mediated or not?

Hi,

I was looking up histamine sensitivity and ran across this website on HPU. I did not find much else online in a quick search other than this site. So, I am still trying to find info on it... Anyone heard of it or have thoughts???

http://www.hputest.nl/ewhat.htm

"Symptoms of porphyria such as abdominal discomfort (belly pains, constipation, nausea), leg cramps, weakness of the muscles in the arm, anxiety and agitation, skin complaints that increase during exposure to the sun are found in HPU to. Other symptoms like a slightly rapid heartbeat and convulsions, are however, found much less frequent in HPU-patients.

Studying thousands of patients with krytopyrroluria, porphyria and HPU we found the following structure in complaints.

Symptoms caused by a decrease of the haem production

In the case of HPU less haem is produced than normally. Only in severe cases this causes complaints. Haem is the building block of haemoglobin, myoglobulin and cytochrome C. So in these severe cases anaemia, tiredness, muscular weakness and functional liver problems are present. In the haem formed in most of the cases more zinc is linked than normal. So part of the haemoglobin is zinc-haemoglobin.

Symptoms caused by deficiencies of Pyridoxal-5-phosphate and zinc

Much more complaints are however caused by the deficiencies of pyridoxal-5-phosphate, zinc and manganese. To these complaints belong also muscle weakness, joint complaints (hypermobility), problems carbohydrate intolerance, allergy due by a bad protein digestion, problems around menstrual cycle, pregnancy and childbirth (miscarriage) (instability of the pelvis), hypoglycaemia or diabetes.

Symptoms caused by down regulation

Other symptoms are caused by down regulation. These symptoms are tiredness, hyperactivity/drive, thyroid dysfunction, headache/migraine, gluten sensitivity, low blood pressure, infertility, overweight, heart and vascular disease, pituitary hypofunction and so on. "

Hiya!

Wow! I am glad that you found something to make such a big difference so quickly! YAY!

Hi,

I think it can be fairly common with us, but if it is significant and not normal for you, it may warrant talking to a dr about it.

Sounds like with increase in inactivity, you are talking about pooling issues. These could change day to day for many reasons: fluid intake, salt intake, activity, meds, temperature of environment, and for women possibly one of the most overlooked is hormones.

If you have EDS or other reasons that your blood vessels do not constrict properly you are already apt to pool and swell. If you have something such as an increase in hormones that further relaxes your collagen, then you are apt to have an increase in pooling/swelling.

Not sure if that makes sense or helps... but, thought I would take a stab at it.

Topamax? Not sure...

Hi,

Add me to the frequent hair falling out club! For about as long as I remember by hair has always fallen out more than anyone I have ever known, and I get teased about it all the time... But, yet I have quite think hair. (thankgoodness )

I have had bouts of where I lose chunks of eyelashes or eyebrows to the point you can see a mm or so gap in my lashes. This is supposed to be due to a shock to the body, when it is expressed like this. In this instance I had just started taking amitriptyline. So, the dr. said this was the cause.

Other times like more recently I have not had any med changes for months, but have increases in my crazy hair loss. This for me is due to low iron (low ferretin). This is a characteristic symptom. Especially if you are very temperture sensitive (can't get warm), have irregular menses, or have any cravings for high iron foods or things like ice.

Low iron can affect so many things, and drs. tend to overlook and not measure patients ferretin level. They only look to see if you are straightforward anemic by looking at your hemotocrit etc. on a routine blood test, they don't go as far to look at ferretin. I had extremely low ferretin (3 when it should be at least 60) before they started to figure out what is going on. It is not an easy catch. If you have the symptoms talk to your dr. about having your ferretin level tested.

Treating it has helped me some. I still have more than enough symptoms, but the low iron makes it significatly worse. I am sure it is still quite low, so I have a long way to go...

Hope that can help!

Thanks for the heads up! I think I have heard of this before, but not sure... I haven't had much of antibiotics since I have had any idea what was going on with me.

From the list I think I only have had Avelox before. I can't remember my reaction... I know that it was one of several antibiotics for a very stubborn upper resp./strep type infection I had for at least three months. I want to say that the Avelox proved to not be my friend for stomach reasons or something, but I can't remember...

I will have to remember this for the future!

Thanks for the heads up! I think I have heard of this before, but not sure... I haven't had much of antibiotics since I have had any idea what was going on with me.

From the list I think I only have had Avelox before. I can't remember my reaction... I know that it was one of several antibiotics for a very stubborn upper resp./strep type infection I had for at least three months. I want to say that the Avelox proved to not be my friend for stomach reasons or something, but I can't remember...

I will have to remember this for the future!

Thanks for the heads up! I think I have heard of this before, but not sure... I haven't had much of antibiotics since I have had any idea what was going on with me.

From the list I think I only have had Avelox before. I can't remember my reaction... I know that it was one of several antibiotics for a very stubborn upper resp./strep type infection I had for at least three months. I want to say that the Avelox proved to not be my friend for stomach reasons or something, but I can't remember...

I will have to remember this for the future!

Hi,

I just got back from making an approx. 3 hr. airplane ride to and from Miami for my sisters wedding this past weekend. I had chest and abdominal issues almos the entire time. They got worse after being at the hotel almost 2 days. Then got a bit better for about a day. Then, things progressed to almost an immediate need for a trip to the bathroom after every meal. (or less there was practically no fat content)

It kinda of reminds me of what my mother has gone through post gallbladder removal and hearing other peoples tales of gallbladder issues. So, I am wondering if my issue is gallbladder related???

Anyone know if airplane flights can trigger or worsen gallbladder issues? (I wondered with the cabin being pressurized etc. if this could affect it?)

Anyone had worsening issues after flight???

Food intake has been approximately the same. Possibly a bit more concentrated of "bad" foods in a short period, but symptoms didn't occur immediately or get better if I ate better etc. So, it leads me to think it is not purely diet related. I have done much worse before and had nothing other than reflux occur.

I have also had nausea- no vomiting, reflux, pain and cramping, chest pain, "D", and many foods are triggers or anything over a certain quantity of food is causing serious digestive issues.

People that I traveled with are not reporting same symptoms, so I have not really figured it was a "bug" or food poisoning.

Any ideas???

Thanks!

Any ideas???

Hi,

Sorry that he is having so much trouble. I can identify with some of what he is going through. I had issues all through school, and had to leave grad school because of dysautonomia.

Some thoughts I had after reading...

-Remind him it is good to fidget in his chair and to do leg squeezes etc.

-See if there is a way for him to prop up his legs while sitting (footstool)

- I learned that I could not really do the 90 minute classes with no break. Legally they should get a break after a certain amount of time. Work with the school to make sure they are getting it. Also, make sure he gets up and walks during break even if he feels tired. Also, I got clearance to get up and leave as needed to help with this.

-Make sure he is able to have access to water at all times and have a steady stream throughout the day to avoid dehydration.

-See what can be done to control the temp of his classrooms. Also, help him with wearing layers and having a sweater etc. at school.

-Get permission for him to have snacks on him to eat as needed. Try to help him ID when he should breakdown and eat.

-I had serious concentration/staying awake issues in high school. I found sucking on hard candy or mints to help keep me a little more alert.

-Encourage him to eat his lunch. I was awful at actually eating lunch. Help him to avoid carb foods that will lead to a quick crash after eating.

-My heavy backpack was also a big trigger for me. Work with the school to see what can be done about lightening his load.

-See if they can let him pick where to sit in each classroom. Front may be better for less distractions and to keep attention to what is going on. But, also I always felt like I could not fidget etc. the way I wanted if the whole class was watching. So, he may prefer the back. I would also suggest a seat at the end of a row, and preferably close to the door. That way if it is hot, they can leave the door open and he gets the air. Also, if he needs to get up he is close to the door. Also, avoid having people on all sides. They all create more body heat and distractions.

-Figure out if he learns better from listening or taking notes. Multitasking like this all day is super tough. So, maybe he can just listen and get notes from someone else, tape record the lectures, etc. I tended to find either I could listen and follow along in class or just work to copy notes, I was not always good at doing everything. If they use the same thing year after year, see if he can get the notes before hand, and then take his own notes as they go through the lecture.

-If there is a teacher that moves super fast, see if they can slow down. If there is one that jumps around, see if anything can be done.

-Do what can to avoid/deal with distractions. In middle school a teacher refused to move me from a table of 4 students, and 2 of the 4 were some of the biggest pot heads you ever smelled. I think I killed more brain cells in that class, then facts I learned. I even talked with the teacher multiple times about needing to move, and never got anywhere. It was awful! Perfume etc. could also be just about as bad. Also, see if teachers will inact a no using smelly lotions etc. in class rule. I always hated when that girl would pull out her expensive smelly lotion every day to show off and give me an instant headache.

-Work with his dr. to get him on best schedule for optimum results for during school hours.

-See if he knows if he learns better if room is light or dark? Does he prefer teacher to use a markerboard etc., projector, powerpoint slides, etc.?

-Or less he wants to recline, I wouldn't push it. Not all of us feel better reclined. I don't. It would make it hard to see board etc. too...

-Could try to test in another room, or just work on where he is in class to minimize distractions etc. I had a classroom where a flourescent light was going out, and would go on and off, and make an awful buzzing noise. If there are things like this, see if the school will work with you to fix them.

-Work with him on any test anxiety or focusing to the task at hand when handed a test and becoming able to block everything else out. Maybe even ear plugs??? And if it would help he ease any stress etc. to take advantage of extra time to take a test.

Hope that some of these ideas help!

Hi,

So far, I have had the best results and overall least side effects from Zoloft. I think it would be worth giving it a trial run.

Hi,

Are you going off the Atenolol because it is no longer working or needed? Also, that it probably isn't helping the low bp upon standing?

Sounds like ya probably don't need it, but not sure what affect you may see when discontinuing it...

Sounds like you may be having a bit better luck with drs. now? I am glad that your gall bladder issues are now resolved! OUCH!

Hi,

One of my worst triggers to my ANS symptoms is pain. It can make things go from my relatively normal to bottoming out it seconds.

As far as for "normal" people, I believe the same pain-ANS pathway exists, but their threshold for pain to activate ANS reaction is normally higher and the ANS reaction is normally more gradual and less severe.

Hi,

I had a much more pronouced episode of this when I tried Melatonin for sleep. Have you recently tried something new med-wise?

Also, I believe that feeling extremely cold can come with iron deficiency. Have you been tested? Check the symptoms through google to see if it fits at all.

As I became more iron deficient (kinda dangerously low) I started to have some of the weirdest side effects and cravings. I have never ate much in the way of cereal. All of a sudden I am buying six boxes of it, AND eating it with milk. I always used to not tolerate it in a lactose intolerant way, so it was very weird. I also was craving ice cream, frozen yogurt etc. like crazy. Serious chocolate cravings.... Eating and craving ice to the point it was painful to be without ice.

Not sure if any of that helps? Otherwise I would say it is possible you may need to check your thyroid #'s, because you may need a med adjustment.