Immune System?

[lavender]

Sorry to bother all of you with so many questions.

one question I have is kinda like Pickledfairy. I have a set of symptoms that I'm not sure could relate to dysautonomia or POTS.

I started getting sick when I was about 9; 16 years ago. I'm trying to think of how to keep this brief.

My biggest symptom is constant debilitating fatigue.

The problems I've expained in my hands and feet are also constant and can be pretty major.

Here's most of the others...they all come and go depending:

jointpain, most all my joints, but no joint damage

mottled skin

rashes

muscle weakness and tingling

headaches

low grade fever

chills

trouble breathing...getting enough air, pain in breathing (low DLCO)

dizzyness, lightheaded

nausia

stomach and intestinal pain....sometimes feels like food just sits there for HOURS with loss of appitite

(a lot of the time the pain gets worse and worse if I am standing or sitting up, but improves laying down)

constipation

diarrhea

insomnia....worse if I've "overdone it", am overly tired, am uptight, or with hormone changes. In charting it the doctor says it looks like my circadian rhythm is "floating"

cognative dysfunction

swollen glands

ringing in ears

swollen purple eyelids

my eyes get hot and sore and my nose dry when i am tachy

hypothyroidism

chemical and food sensitivities

chest pain

flushed cheeks

trouble emptying bladder

bp and hr swings

when I'm really sick my periods are often irregular

I've found a few things over the years that make my symptoms really flare up. exercise or too much activity, estrogens (xeno or phytoestogens or birth control), heat or too much sun, anything that boosts my immune system...echinacea, high doses of vit C, different herbs and vitamins doctors have given me. all of these things have a dramatic effect on my illness. They can cause me to become totally bedridden. Vascodilators also make things worse.

Things that help some: rest rest rest, healthy eating, natural progesterone cream - if used at the right time, and immune suppressant meds. When I am on either methotrexate or humira, (both suppress or alter the immune system) I am more stable. It doesn't at all cure me but my pain is a lot less and I can go from, at my very best, being up for an hour and doing things like going to town not more that 2 or 3 times a week for not more that an hour....before I crash....to being up for 2 or 3 hours and being able to go to town almost every day for 1 to 2 hours. I still "crash" and have bad flare ups on the immune supressants but it doesn't happen near as often, last as long or get as bad.

lately most doctors feel like I have some kind of autoimmune or undifferentiated collegan vascular disease...because of my symptoms and how I respond to the meds. But most of my lab work doesn't show that.

So I guess my question is, do any of these symptoms sound familiar or not? And is there ever a connection between POTS or the autonomic system and the immune system. I know my immune system is involved in my illness and is overreactive.

thanks again for your help. sorry this is long. I would give ANYTHING to get to the bottom of this.

[labas_2u@shaw.ca]

Hi Lavender

I have the most of the same problems as yourself.

It is because the autoimmune disease (still unspecified) attacks my autonomic system

Hope this helps.

Take Care

Maggs

[MNsue]

I can relate. I have had many of the same symptoms for 16 years. I currently work with an immunologist because I developed weakness on my left side. The IV steroids and Cell Cept have kept the weakness from getting worse. We have not found any antibody markers besides very high tyroid antibodies. I was diagnosed with chronic fatigue syndrome when I was 24 after having mono, and have an active Epstine Bar Virus. Over the years I have develped usuall immune disfunctions. I am thankful for the immunologist I work with, because I don't think I would be walking today if he did not take a risk and treat me without an antibody marker.

I was diagnosed with POTS for the first time one year ago. The Midodrine helps me to funtion better on a daily basis. It is very up and down for me. I was great in November (Walking daily up to 2 miles) and then had a major flare in December. I am slowing regaining strength again in my left side.

I don't know if I will ever get a diagnosis, I try to focus on having good treatment options. It gives me comphort to know that there are many things we can try.

Our immune systems are so complicated. Let's hope someday they will figure out a solution.

Rhonda

[masumeh]

hmm...well. i have to say, first of all, I really feel for you, it sounds like you have suffered a lot, for a long long time. sometimes there is just not enough medical knowledge out there....although we are in the "tech" and modern age, it just isn't covering all the diseases there are.

second, i don't have some of the symptoms you mentioned, and although many of them sound like pots and what i've experienced, some stand out as something else...so it makes sense that your docs are saying it's more than pots. like, the purple eyelids, that's not something i have heard of connected to pots. but, the sleeping problems, bowel problems, fatigue and muscle weakness, nausea, hr and bp regulation problems--that sounds like good old pots to me.

hope you get some answers soon.

[lavender]

Thanks. I appreciate each reply.

Can there be a connection between dysautonomia and some kind of immune system dysfunction? I have mostly worked with Rheum. drs, but I'm not sure they are the best doctor to see for dysautonomia....are they? What type of doctor would most likely be able to look at my entire picture....as I think everything going on it connected?

Rhonda or Maggs, since your situation may be similar to mine, if you can think of any info, tips, suggestions, tests to look into or things you've learned that might help me, please pass them on!

[Dizzy Dame]

Hi Lavender,

Two other things you may want to look into---on top of the immune disorder---are Mitochondrial dysfunction and lyme disease.

I hope you can get to the bottom of your symptoms!

-Lauren

[Guest Eliza]

lavender,

I think many people with POTS see an "Electrophysiology Cardiologist" (EP cardiologist) and some others see Neurologists. I was diagnosed by an EP cardio doc that is very familiar with POTS. I think it is hard to find a doc to treat ALL of the symptoms, so you may need a few good docs.

I see my EP for all cardio stuff and I have a great Family Practice doc that treats my other symptoms. A rhuematologist is good for the joint problems but they don't typically treat for POTS.

[mcpucho]

Thanks. I appreciate each reply.

Can there be a connection between dysautonomia and some kind of immune system dysfunction? I have mostly worked with Rheum. drs, but I'm not sure they are the best doctor to see for dysautonomia....are they? What type of doctor would most likely be able to look at my entire picture....as I think everything going on it connected?

Rhonda or Maggs, since your situation may be similar to mine, if you can think of any info, tips, suggestions, tests to look into or things you've learned that might help me, please pass them on!

Yes there is a definitive connection between autonomic and immune function

You should be seeing a nuerologist, they can run autonomic panel of testing. Also an immunologist can check underlying immune dysfunction such as deficient IgG, IgM, IgA and other immuno-deficiencies. Ask your PCP for referrals. Some doctors specialize neuroimmunology as well, which is your best bet. You can check the roster at your local hospital and see who list neuroimmunology as a speciality and see if they have a private practice.