Help?

[LilySnick12]

I was just wondering if anyone else with POTS has any of the following, or if its just me? (Please bear with me as its a long list and I may forget some things) Also wondering if there are any ideas into what some of these are or what causes them? (I know some are from the POTS).

I have had my gallbladder and appendix out (with an infection after surgery that went untreated because "I didn't know what I was talking about. Redness, etc. is common) , a rib-resection, chronic abdominal pain (unknown cause), iron deficiancy anemia, chiari I malformation, trouble breaking down milk sugars (huh?), migraines, periods that are very painful and never end (my last one was 3 months straight and only stopped a week ago), food allergies, medicine allergies, ovarian cysts, trouble absorbing vitamin D, excerise intolerance, asthma, dizziness, chronic fatigue, seizures (unknown cause and type- they started 2 months ago), back/neck/shoulder problems (muscles are too tight and knotted even with massage therapy), low resistance to germs (I catch EVERYTHING), lower back pain, fluctuating appetite (some days I'm very hungry and some I can't stand to be around food), sleep trouble, nausea, brusing/breaking blood vessels easily, tiredness, no stamina, memory trouble, "brain fog", low urine output (2-3 times a day), "no" immune system (my dr. says the = of a chemo patient :0 !) ugh... the list goes on...

I'll stop posting symptoms now since I'm actually having brain fog. Lol. I do feel the need to mention that I'm not very old to have POTS (I'm not quite 18), and was ALSO wondering if anyone had any advice with how to deal with the school. (Mine thinks I'm "not sick, and I just keep making up things" and has never heard of POTS. They also think that I don't "deserve to graduate, since I haven't had to work as hard as the other students"!!!!! UGH! Lol. That's because I've had to work HARDER! Ha ha. I'm on homebound and it's tough. I'm basically self taught and the "teachers" are no help...)

Anyway... I'm rambling so I guess I'll stop writing and wait for the replies that I'm sure will be very interesting.

[pat57]

the following is a copy off the web in response to your "back/neck/shoulder pain"

otherwise I just want to say I'm so sorry you are bearing all this. Wishing you increased good health and support!

Coat Hanger Pain: This is a rare type of

pain that is occasionally seen in people

with Parkinson's who also suffer from

postural hypotension (drop of blood

pressure on standing due to autonomic

nervous system dysfunction). However,

this type of pain is more common in

people who have a form of parkinsonism

called multiple system atrophy (MSA)

rather than Parkinson's. (Further

information about MSA is available from

the Sarah Matheson Trust, Neurovascular

Medicine Unit, (Pickering Unit), Imperial

College School of Medicine, St Mary's

Hospital, Praed Street, London, W2 1NY,

Tel. 020 7886 1520). The pain usually

starts around the back of the neck and

may radiate to the back of head and the

shoulder muscles. The overall shape of the

area of the body where this pain occurs

resembles a coat hanger. The cause of this

type of pain is unclear and it has been

suggested that the pain may occur due to

reduced blood supply (due to postural

hypotension) to the muscles in the neck

and shoulder area.

[Lukkychrm42]

Hi there,

I'm sorry you're going through so much- and so young, too! As for problems with your school, PLEASE contact DYNA at www.dynakids.org because they have a whole lot of experience with these issues. You can e-mail, but the phone numbers to call are also under the Contact Us section toward the bottom left of the page.

As for the symptoms you've listed- you're right, a lot of them are probably POTS-related, and lots of people here have had gallbladder issues, too. As for the immune system, I really don't know- there could be something else going on there, and I hope you are able to keep seeing doctors who will be able to help you. For the POTS, if you've checked out the main DINET site, there's a physician's list.

Anyway, I hope you start to do better quickly. Take care and be sure to let us know how you're doing!

Lots of love,

Megan

[MomtoGiuliana]

Have you been diagnosed with Chronic Fatigue Syndrome as well as POTS? There is overlap in symptoms, but some people have both.

Welcome to our forum. Hope you can find the treatments you need to improve to a functional level.

Katherine

[lthomas521]

Have you been tested for celiac disease?

http://www.celiac.org/

Anyone who has had her gallbladder out at such a young age should be presumed to have celiac disease until proven otherwise, in my opinion. The iron-deficiency anemia is also suggestive, as well as your just being generally sick all over. Lots of people with POTS-like problems have celiac disease.

Keep eating gluten-containing products until after you are tested, otherwise you'll get a false-negative result. If you get a positive test result for celiac disease, then you will have to stop eating products made from wheat and similar grains.

If you get a positive test, then other people in your family should be tested as well, especially if they have mysterious illnesses.

[jhjd]

I do feel the need to mention that I'm not very old to have POTS (I'm not quite 18), and was ALSO wondering if anyone had any advice with how to deal with the school. (Mine thinks I'm "not sick, and I just keep making up things" and has never heard of POTS. They also think that I don't "deserve to graduate, since I haven't had to work as hard as the other students"!!!!! UGH! Lol. That's because I've had to work HARDER! Ha ha. I'm on homebound and it's tough. I'm basically self taught and the "teachers" are no help...)

DYNAkids is a great resource.

*Here's my mandatory professional disclaimer: NOT LEGAL ADVICE (don't you just love lawyers?)* Having had some experience with special education law, I can tell you that this is not okay. My advice if they're giving you problems is to contact your states' disability advocacy program. For example, Alabama's program- ADAP- is run out of the University in Tuscaloosa. They should be able to give you advice specific to your situation and school district, and may be able to provide counsel free or at a reduced rate. You have specific rights to an appropriate education, and they should write, update, and follow your IEP (individualized education program) to enable you to graduate in keeping with your state's diploma requirements (note that this may not be on time). You should keep written/recorded records of harrasing or belittling statements made by those associated with the school as well- check on your state's laws as to when and how you can record conversations. Generally, you have to at least notify the other person that you are going to do so.

Good Luck!

[LilySnick12]

wow. so many things to respond to.

momtoGiuliana: Yes, I have been officially diagnosed with CFS as well as POTS.

lthomas521: I have been tested 3 times for celiac disease and all three times I have tested negative. But I do have food allergies (egg yolks, peanuts and peanut products and something called orchard grass), so I am careful of what I eat.

jhjD: I have contacted the local advocacy and unfortuatly they were unable to do much other than to recommend (unofficially) that I file complaints at the state level that could take up to two years to be processed- in which case I should (hopefully) have graduated (although the school doesn't see it that way). I have an updated IEP, a 504 as of this year (I've been requesting it since 6th grade), and my advocate and doctor tell me that I have a "hidden medical disability" because of the CFS, POTS, and immune issues which they say is also recognized by the state since I have a temporary handicapped parking permit. I have been keeping written records as well as keeping some nasty messages left on my personal cell phone from the school staff. There are many, many other issues with the school that I will not get into here, but even though we've been told by many local lawyers that we have an excellent case, no one is willing to take on my school. (I'm told it's the 2nd richest in my state) and that I need to contact a special education lawyer (good luck, there are none within an hour of me, and even then it's hard to get through and phone calls/e-mails aren't returned). I don't know what else to do and my parents are extremely frustrated also, but it would be a waste to switch schools so close to my graduation (or when I'm supposed to graduate). Any further advice you may have is greatly appreciated.

Thanks everyone for your help. It's hard to have so many things at once and not know if they are connected or have a doctor who is familiar with POTS. If I was allowed to drive (state law prohibits me from driving within 6 months of my last seizure) I could drive an hour to meet with a neurologist who is familiar with POTS, but other than him I haven't heard of anyone else within a resonable distance from my home that my parents wouldn't have to take off work for several days to take me.

If anyone else has any knowledge, advice or comments I wanna hear 'em! Lol. Keep 'em comin'!

[jhjd]

*still not legal advice*

Most of what you want to do really has to depend on your goal. If you're close to graduating and just want to get out of it, then my best 'advice' is to just try to get through it. Sometimes you may be able to request an advocate go with you to the IEP meeting, even if they won't sue on your behalf (this is actually where most of my special education experience lies). But you should know that you have the right to a transition plan so that your 504/IEP should not only help you graduate, but should also help you go onto whatever you want to do (within reason of course). Taking legal action, even at this late stage, or switching schools may therefore be worth it. Again, keep calling your advocacy agency with specific questions. Good luck!

[LilySnick12]

thanks for the advice. i've already had to change some plans. i wanted to be a pediatric D.O. but that's not going to happen so I'm looking into becoming a pediatic oncology therapist (like physical therapy for kids with cancer who are in the hospital). I'm supposed to have more than enough credits to graduate this year (under the 504/IEP) with my class (but the school keeps taking them away and changing my grades which I don't understand how that's even remotely legal), so I told them I'm willing to do online classes and summer school. But I don't want to be in this school any longer than I have to- especially if they aren't going to help me- or even be nice to me. We would sue but we can't find any lawyers who are willing to go against my school. All of the lawyers we call say that I have a great case but to talk to someone else.

*still not legal advice*

Most of what you want to do really has to depend on your goal. If you're close to graduating and just want to get out of it, then my best 'advice' is to just try to get through it. Sometimes you may be able to request an advocate go with you to the IEP meeting, even if they won't sue on your behalf (this is actually where most of my special education experience lies). But you should know that you have the right to a transition plan so that your 504/IEP should not only help you graduate, but should also help you go onto whatever you want to do (within reason of course). Taking legal action, even at this late stage, or switching schools may therefore be worth it. Again, keep calling your advocacy agency with specific questions. Good luck!

[thejohnsongang]

Sorry to get around to posting to you so late. I have been out of it for about a week and am now just starting to catch up on the posts.

My daughter was just dx with POTS on the 6th of this month. She is 15, turning 16 in May. She had been missing a lot of school due to illness/fatigue. I got a letter from her PCP and a letter from her POTS doctor explaining her illness and limitations. I requested a Section 504 (which you can do in any state). It is accommodation's for her while in school due to her health. She can stand, lay down, take a walk, put her head down, sit next to a window or air cond. unit, take meds in class, keep water with her at all time, eat snacks and it also gives her extra time for test/exams no matter if they are chapter test or finals. You should check into this through your doctor and school. You have made it so far in school and by law they can not discriminate against you because of your illness. They have to provide you an education that works with your illness and they "have" to accommodate you. It is part of the disability act.

I hope you can find what you need here with us and that you get to finish your education. Get your parents involved to help advocate for you. Together all of you should reach a common goal. Sorry to hear that you have POTS, but now it learning about it and controlling it that is important. Good luck. Research Section 504 and educate yourself on it before approaching it.

[LilySnick12]

Actually, I have a 504 in place already. Unfortuantely it is up to the school as to how to use and interpret it and the extra funding it brings.

My doctors (all 7+ of them) have written notes to the school and everything but it hasn't seemed to help. When the school recieved a letter from my doctor (on their own stamped stationary), saying that I had immune problems and listing many other things and that I could not drive or do traditional school days. At this time I was already "out" on homebound. The school interpreted the letter as that I was doing too much and should drop some classes or drop and out come back next year.

My dilema is not getting the proper paper work, it's getting the school to use it and comply with it for my benefit- which they don't seem to think is important.

Thank your for you help though.

[thejohnsongang]

In what state do you actually live and go to school? Maybe between us all we can do some research and find out who is out there to help you and what avenues to take. This is an frustrating disease and it hurts even more when you are bullied by schools and or staff. Have your parents talked with the school? Requested an appeal or talked to the US dept of education? Here are a couple of sites to check out. Hope some of them help. Hang in there..we are all here to help if we can.

http://www.ed.gov( This is the us dept. of education)

http://www.usdoj.gov/crt/ada/cguide.htm#anchor65310 (this is a great site as it is the disability rights law per the dept of justice)

Here are some other sites to check out.

http://eric.ed.gov/ERICWebPortal/Home.port...900000b801311b8

http://www.questia.com/PM.qst?a=o&se=g...mp;d=5000394113

http://eric.ed.gov/ERICWebPortal/Home.port...900000b800976fc

[Tessa]

If you want to be tested for celiac, gluten and other food sensitivities, I recommend you to check the following website:

Enterolab

As they mention on their website:

EnteroLab is a registered and fully accredited* clinical laboratory specializing in the analysis of intestinal specimens for food sensitivities (reactions by the immune system to common proteins in the diet) that cause a variety of symptoms and diseases.

I can assure it is worth trying.

Take care,

Love,

Tessa

[LilySnick12]

tessa: i have been tested for celiac. (3 times, all negative). i have also been tested for sensativities and allergies. I am allergic to orchard grass (?), egg yolks, peanuts and peanut products. Thanks for the advice though. ;-)

thejohnsongang: I live in Michigan. Thanks for the links. I'll go look at them right now! :-D My parents have talked to the school and so have my diability advocates- it seems to make no difference. We were told by my advocates that unless I planned to go an extra year (I'm supposed to graduate this yr) that an appeal would do no good, since it may take 2 years or more to process. :-( Any help or advice you have is greatly appreciated. It's frustrating to say the least.

In what state do you actually live and go to school? Maybe between us all we can do some research and find out who is out there to help you and what avenues to take. This is an frustrating disease and it hurts even more when you are bullied by schools and or staff. Have your parents talked with the school? Requested an appeal or talked to the US dept of education? Here are a couple of sites to check out. Hope some of them help. Hang in there..we are all here to help if we can.

http://www.ed.gov( This is the us dept. of education)

http://www.usdoj.gov/crt/ada/cguide.htm#anchor65310 (this is a great site as it is the disability rights law per the dept of justice)

Here are some other sites to check out.

http://eric.ed.gov/ERICWebPortal/Home.port...900000b801311b8

http://www.questia.com/PM.qst?a=o&se=g...mp;d=5000394113

http://eric.ed.gov/ERICWebPortal/Home.port...900000b800976fc

[deucykub]

Hi, LilySnick:

Welcome to our little niche on the net.

I really don't have any legal or procedural advice for you because it sounds as though you are taking a really thorough approach to dealing with your school, but you have my total empathy. I've been where you are right now.

I became chronically ill at the age of 17 with, at the time, an unknown illness that caused horrible back pain and debilitating fatigue. It wasn't until four years later that a doctor finally diagnosed it (Fibromyalgia). I dealt with the same kind of disbelief from my friends and teachers, then, too. I finished my senior year through the homebound program and tried to keep up with my music (singing), but it took all of my energy to do that one homebound class and keep up with practices. My choir director, who was once my mentor and friend, turned on me. I broke school records for solo competitions and was courted by top-notch college music programs; I was even selected in high school as one of 18 high school and college women across the state of Florida for an honor choir. But my director forcibly excluded me from singing with the school's ensemble group at competitions and refused to allow me to sing at my graduation (the only graduation in my high school career where I did not sing) because he thought I was "faking it."

One of my teachers who didn't judge me and believed I was really sick talked with my parents and told them the one thing that rescued my senior year. That was "just because your daughter is sick doesn't mean she has to stop living." At the time, my parents were "old school," believing that if you are too sick to go to school, then you are too sick to leave home. After that, my parents started to allow me to go out with friends as I was able (which required a lot less energy than a full school day!).

That is so important - please be sure to keep having fun. Your emotional health is just as important as your physical health.

Fifteen years later (wow, that makes me sound old, lol), I can tell you that I got through that period of illness in my life. I finished not only my bachelor's degree (even though it took me seven years), but I now hold a master's degree. Singing didn't turn out to be the right fit for me, because the degree required me to be on campus every single day, but I found a major that I really enjoyed where I could take classes two or three days a week! I love my career, am happily married, and thrive in life.

There is hope, and you can make it through this. You'll find that those people who believe in you will give you strength on the days you don't have any left. Ignore those that don't believe in you - they are unhappy in their own lives and want to direct their own misery into your life. Don't give them that power.

The fact that you have developed POTS at such a young age may be actually really good news! Studies show that adolescents have a much greater chance of this illness just going away in their early twenties. I have POTS, too; although, I didn't get it until just last year, but the strength I gained dealing with chronic illness in high school is still there today. Living with chronic illness will make you a stronger person than others your own age, and once you are through this, you'll find yourself less hampered by the self-doubts those around you suffer from because you'll KNOW how easy most challenges are compared to the chronic illness you lived with and conquered.

Well, I didn't mean to write a novel! Know you are not alone - you can live through and thrive through this.

If you ever want to chat, feel free to PM me.

Stay strong and believe in yourself.

Deucykub