jpjd59

So happy you are feeling better!!!!

Pam

Puppylove:

I know it is horrible at this time in your life to be feeling so ill. Try and stay positive (I know that's hard to do - my 23 year old daughter also has POTS). Hope you feel better soon.

Pam

Hippychic258:

The symptoms of most concern right now are the difficulty breathing and feeling that her throat is closing up. However, she has a multitude of symptoms ranging from hives, skin and brain feeling like they are on fire, nausea, heart racing, unable to sleep, hair loss, and many others.

We are hoping for some answers soon (and hopefully a solution)!!!

Yes, my daughter had a sudden onset of POTS in July of 2011 (at 22 years old) right after a viral illness. She is not doing well right now (basically bedridden for the past 3 months) and is being tested for some sort of mast cell disorder.

I just went and looked at your topics as I had forgotten the details about your girl. We've posted before about ivig.

That total quantitative immunoglobulin is a must before ever starting ivig. What type of doctor was considering that? Is that same one that is running the autoimmune tests? If so the guy sounds like he is up on stuff.

Didn't realize you were in san fran area my sister lives in stinson beach. If you decide you want a skin biopsy done, my neurologist here in az specializes in them he also knows how to screen for a lot of stuff that isn't on other docs radars. He also may know someone in your area.

That cyp2 test you told me about was also on that health diagnostic tests with the mthfr gene, there can be a combination of those two genes that cause problems as well. Mine was normal, but I was homozygous for the mthfr which is just as bad as the combo.

Well I can say this I wish I had, had a parent who was as concerned, involved and caring about me and my health. I was a kid of divorce and our needs were lost in the uproar. Though I now know I have had symptoms all my life they really started to show up again in my 20's. I am now a young looking 55 and we have only figured it out in the last few years.

If we can get your girl turned around now so she doesn't have to go through what I did, what a blessing.

Arizona Girl:

It is a different doctor that is running the autoimmune test. I don't see anywhere in the records where the doctor that wanted my daughter to have the IVIG ran a total quantitative immunoglobulin test, but I am not sure. Anyway, our insurance denied the IVIG for POTS. I'm really interested in the MTHFR gene test. I'll have to look in to that. Also, you mentioned a skin biopsy. No one has mentioned that. Would that be to check for a MCAS issue or autoimmune issue? Sorry for the dumb questions, but I am overwhelmed with all of this medical stuff.

Pam

Arizona Girl:

Wow, you are a wealth of info!! I really appreciate it. I'm sure you can understand how frustrating this can be. I would much rather be feeling sick than watch my daughter do through this.

I don't believe a total quanitative immunoglobulin test has been done yet. I do know that one of my daughter's doctors ordered a blood test last week to test for some sort of autoimmune issue but he did not tell me what the test was called. We should have those results in about another week. So it looks like we will have to wait for those results to see what the test was and what the results are.

Pam

Arizona Girl:

Thanks for the info! Would my daughter need to go to a genetic counselor/doctor to be tested for that gene? Also I noticed that the doctor recently did complement testing and C4 came back low. Again, I have no idea how this all ties in together (if it does). Of course her doctor is on vacation this week so I guess I'll be contacting him next week to see what he thinks.

Pam

Misstraci:

Did the doctors explain to you what the high ANA means and how, if so, it relates to POTS?

Pam

I was looking over my daughter's medical records thinking that there must be something that we are missing and I ran across blood test results from last Winter from the Mayo that showed high "ANA". Anyone else have this? (We are thinking right now that she might have some mast cell issue going on - but so far all test results for mast cell clues have come back normal). Could it be some autoimmune mast cell issue?

Pam

Puppylove:

We ended up taking my daughter to the Mayo Clinic in Arizona. We found the trip useful as far as all of the autonomic tests that they can run which other places may not have. We were there for a week (arrived on Sunday and left late on Friday). The only bad part was that once we were back home any follow up care was hard because the Mayo was so far away.

DebbieRose:

So sorry to hear that your appointment didn't go well. Diagnosis of anxiety, really.... you would think the doctors could try harder than that! My daughter has quite a few doctors tell her it was just stress, anxiety, etc. until she finally got her dignosis of POTS.

Don't give up. You know your body best and you know what is normal and not normal for you. Be persistent and you will finally find a doctor who wil listen.

Pam

Issie:

No, she doesn't have EDS.

Pam

My daughter has hyper-POTS which we now believe is the cause of her POTS symptoms. I am trying to find a doctor for her that knows about MCAS/MCAD but that does not require that she has the diagnosis before she sees them.

We live in the San Francisco Bay Area and I wondered if anyone knows of a good doctor in our area who is knowledgeable about MCAD/MCAS.

Thanks!

Pam

Elena11:

Yes, my daughter takes magnesium, Vitamin D and Vitamin B12. I can't really say that we have noticed a lot of difference in her symptoms (although she did say that the magnesium helps her with her chest pain) but she has not had any bad reactions to them so she will continue to take them.

Pam

Issie:

Sorry to hear this wasn't the "miracle drug" for you. I was really hoping that it was. I have to give you credit for trying though. You are a very courageous woman!!!

Pam

Yes, my daughter has POTS and has IC with it. They suspect a mast cell issue with her which she is going through testing for right now. If's no fun!!!

Issie:

I think you are right. I believe that mast cell degranulation has a lot to do with my daughter's POTS; She is going to see a mast cell specialist in a few weeks to see if we can get her on the road to recovery.

Pam

Hanna5918:

Congratulations!!

Pam

So sorry to hear you are going through this. My 23 year old daughter also has POTS (and we believe, and she is being tested now for, some sort of mast cell activation issue also). I am impressed how soon you were able to get your daughter diagnosed!!!

My daughter doesn't have seizures but shes does frequently say that her brain feels like it is on fire. I wish I could help you. I know how scary this is. I'll keep your daughter and your family in my thoughts and prayers.

Issie:

I'm keeping my fingers crossed for you. Good luck!!!

Pam

We are in the process of getting my daughter tested for this also. Some of the tests that they run to evaluate whether or not it is MCAS are a tryptase blood test, a 24 hour urine histamine test and a PGD2 24 hour urine test. So far my daughter has had normal test results (we are still waiting for results from PGD2 urine test).

Although, as I understand it, you can still have MCAS and it may not necessarily show up on the test if the test is run incorrectly or if the test is not performed within a certain amount of time after an "attack".

My daughter's symptoms are feeling like her skin is burning, feeling like she can't breathe, GI symptoms, along with many others.

I am not sure which comes first, POTS or MCAS? All I know is that when my daughter took an antihistamine for a few days her POTS symptoms lessened (until she had to stop the antihistamine because of problems).

There are several people on this website that have MCAS and you can read many of their posts to see what doctors they have seen and what treatments were prescribed.

Good luck!!!

Pam

Yes, she is frustrated because it has been soooo long since she has felt well. Hopefully we will get an answer soon.

Pam

Christy:

So sorry to hear that your son is still struggling to find a treatment that will help him.

We are also having the same kind of problem so I know how frustrating it is. It is suspected that my daughter also has mast cell issues so she was started on a tiny bit of Claritin (because she is so sensitive to meds). The first few days we actually saw some improvement in her POTS symptoms and we were so hopeful that this was the answer. However, on day three the bad reactions that she has had with other antihistamines happened and she had to stop taking the Claritin.

At least it gave us some hope that we are headed in the right direction and hoping to find a med for mast cell that she can tolerate.

Good luck!

Pam

I think Relax86 had a great idea about posting your achievements. We all would love to hear good news and celebrate your accomplishments!

I have heard that licorice root is sometimes used as an alternative to Flornief. I have read though that you should not take it long term. I would check with a doctor..