arizona girl

Not sure who your insurance provider is, but there are things you can do with your plan during the open window that can help with keeping out of pocket down.

Also most plans have a total out of pocket cap. I hit mine every year because of the cost of my infusions, but after that I can go to who ever I need to without worrying about the out of pocket cost. There are two that have to be met in network, and then out of network if you have no choice but to see an out of network provider. Sometimes you can get an out of network provider considered in network, if there are no other doctors available.

We opt on our plan for a higher monthly premium and a lower deductible with lower out of pocket caps. Even though it is more each month it ends of being cheaper by the end of the year. I also am on a plan that requires no referrals. Also sometimes if you are in a hardship situation your provider can wave or lower your copay and/or put you on a payment plan. It doesn't hurt to ask.

I understand the hesitation to use the wheel chair, especially since most of us can still walk. Never thought I would use one, and then I had an episode on my flight back from seeing Dr. Grubb. I had no choice I couldn't stand and almost lost my cookies. The wheel chair assistance was unbelievable and so helpful.

As I can't stand in lines either, whether I use a wheel chair or not I always go through handicap security line. They can't question you in the usa as to why, against the law. You just say you need assistance and they let you through. Didn't think my husband would go for this, but now he loves the benefits of getting through the security mazes so quickly and the convenice of my handicap tag for parking. With kids also traveling with you, he will love it even more, and just needs to get over feeling embarassed that assistance is needed. You need to save your energy to get through the flight.

Make sure your ticket says your flying handicap assisted, this can be added after the fact. It cuts down on the dog and pony show at the ticket counter. At the ticket counter ask how full the plane is. If it is not full and since you already have your seats, let the flight attend know that you periodically need to elevate your legs and ask if you should need to do that can you use an empty set of seats to do that. Tell her you may not need it, but would love her help if you do. On one flight the pilot made sure I had all three seats to myself and I was able to lay down. If the plane is full though you will have less options. They do though usually have seats left open for assistance at check in.

Let us know how it goes and what worked when you get back.

Oh dani, so sad to hear and how traumatic! You know I'm nearby here in chandler, if you want to get together and talk. I know a while back we were all talking about trying to do that. I'm happy to be there for you if you need it. Just let me know, okay!

What great news kr!!! I'm so happy for you and pray that this continues to work well for you. Amazing what we live with and think is normal.

Hi Rachel,

Sorry can't give any advice on the wheelchair. Just wanted to say I'm happy to hear your looking into the cause of your muscle weakness. I read your cranberry tea time a while back and remembered thinking that it was more the just dysautonomia. I hope the mitochrondrial investigation points you to something treatable.

I was just wondering if they had ruled out all the autoimmune neuromuscular diseases, because your symptoms could also fit there too. When I was getting my ivig infusions at the infusion clinic there were other patients that had muscle weakness similar to your description. They had different diagnoses even though similar symptoms, some were ones like ms, mysthenia gravis, polyneuropathies, cdip, derma and polymyositis, stiff persons syndrome and even autoimmune thyroid disease called graves. Hopefully you already know about these and they already ruled them out.

I too have muscle weakness/fatigue in my quads and upper arms and have tended to avoid activities that fatigue them. Standing in line is always just plain painful and I avoid like the plague. If I avoid those activities that aggravate these symptoms, I can sometimes pretend that I'm fine, I just have to stay in the box. So, it can be unsettling when I'm forced to go out of it and realize I'm not as good as I thought.

I like to think of myself as the Queen of compensation and avoidance. When I'm her things are good!

Well that was to be the back up one to try if the one I first was prescibed didn't work. Dr. Gubb out of toledo prescibed me labetalol, it is an alpha beta and is good for people who swing up and down. I use the 100mg short acting form and often split that in half.

It works fairly well for me as other beta's and bp meds stayed in my system to long and my hr/bp got to low during sleep. I tirate it up and down depending on how symptomatic I am and some days I don't take it at all anymore. We are treating a lot of the underlying conditions that caused my autonomic neuropathy so these symptoms are starting to improve.

Labetalol is a good one and it's been around for a long time. If your a riser on standing maybe ask your doctor to switch you.

Sorry to hear the bystolic is troubling you, it is a fairly new bp med, so the jury may still be out on how effective it actually is for people like us. I know for a lot of us less is more, baby doses seem more effective then large ones.

Yes, it is one of the other forms of dysautonomia, this is not just a pots forum. Pots is only one form of dysautonomia that is supported here. On our dinet main page the different types of dysautonomia are discussed NCS/NMS is one of them. The definition of pots is only a rise in heart rate without any change in blood pressure.

Many of us here have a combination of several types of dysautonomia. I myself have pots with an excessive rise in blood pressure (hyper), which can lead to syncope. You may also have pots. Ask your doctor for a copy of all the data collected during your tilt test, these are considered lab results and you have every right to them. On those sheets you should see what happen both with your hr and bp, and what happened right as syncope is occuring.

NMS though is different then pots even if they are often found together. A drop in blood pressure causing a faint, can be dangerous due to injury when falling. So, please be careful with yourself. There are other members here on the forum that are like you.

Did your doctor change your treatment plan? Did he say anything about your atenonol? I was on it and it stayed to long in my body and caused me to wake with low blood pressure/hypotension. I'd think if you don't have pots or a high heart rate and you have low blood pressure that leads to syncope, that a bp medicine might not be the right choice and is something that I'd be discussing with my doctor.

Well I'm glad your getting some answers, so you are heading in the right direction. As awful as the ttt is the great thing about it or silver lining, is it is proof that something really is wrong, and your not crazy or faking it, which always seems to be something most of us here have had to overcome to get treated. My test opened doors that eventually lead to the cause of my dysautonomia.

So hang in there, you are on your way!

Hi, your folate, thyroid, ana and b12 jumped out to me.

A high ana and tsh can be a sign that you have hashimoto thyroiditis. Have they tested your thyroid antibodies yet? I have this and my tsh was in the normal range, but I've had symptoms of hyper and hypo thyroid for years. A rheumy testing me for autoimmune disease checked my tpo/abs and low and behold I have hashimoto. I've since learned ana can be positive when you have this. So if you have thyroid symptoms you might want to ask your doc about this.

High folate and low b12 can point to a genetic gene defect called MTHFR. It means the enzyme the gene uses to convert folic acid has been switched and it can not process the common folic acid. B12 is in the same pathway. If you also have elevated homocystene, it is very likely that you should be tested for this gene. It is also associated with other medical conditions.

The treatment for it is to take the active forms of folate and b12 called the methyl form, ie methlyfolate and methlyb12

BTW it is very easy to find the answers to all the question you've asked about lab results by going to a website like lab tests online, I google my labs all the time.

Shocking isn't it! A neuro at UCLA is the one who first asked me to do poor Women's at home. I got an automatic cuff and charted for 3 months before seeing her again. Not only did my hr go up but so did my bp and then I sometimes awoke with low hr and hypotension. I was swinging up and down like a ride at disneyland.

I never felt my heart racing, I only felt fatigued on standing and better when I lied down. I was shocked, I think when your body has always done this you don't always recognize it, because it has been normal for you.

I now can tell when it's popping up, so that helps and my labetalol helps with the rises when it's acting up. I'm hyperpots so the labetalol is better with risers like me.

Good luck w your ttt, where comfortable shoes and clothes that show your legs so they can note change color of the skin. If you can get them to check your supine and standing catecholamines during it even better.

Cammee, I agree it really depends on what's causing your symptoms. If one only have a rise in heart rate on standing/Pots, and your young then a beta blocker alone might work. Studies on this group of patients found that many out grow it and for the most part that is the main information that has made it to most doctor's offices. Which is only a small part of the picture. Also I don't know that any long term followup was done on those patients to see if they relapsed as they got older.

Many illnesses cause a rise in heart rate and once treated the heart rate will drop. In your case from what you've shared, you also have low blood pressure another form of dysautonomia a beta blocker or blood pressure meds can drop that further. Which is why the midrone I guess. Effexor can also have an impact, how long have you been on that and did you have symptoms before starting it?

On the other things you've listed gi, pcos and arthritis, you don't mention how they are being treated. I have gi and pcos issues as well, but mine appear to be caused from autoimmune disease and small fiber nerves damaged by this process. Autoimmune causes can effect many different body processes and treating them will help improve autonomic symptoms. As many of us know though there are really very few if any ways to cure an autoimmune disease and it must be managed for life.

That is where I'm at and while we are doing our best to manage it, it is a struggle, but I have had improvements on my hr/bp which both used to swing high to low depending on upright or supine. I don't know what normal feels like and I still deal daily with pain, fatigue and other symptoms. The treatment plan is still being tweeked. I so wish I had been diagnosed sooner and treated sooner.

So, I encouraged you to follow your own heart and instincts, you know yourself. If this isn't jiving with what the doctors are saying, trust yourself first, you are your own expert. Many doctors just can't know enough about every disease process out there and few are willing to admit that they don't, instead make the patient feel like they are the problem. Don't allow that to happen to you. I've had to move on from many doctor's who didn't get it. Things are better now that I have doctors that have a better idea of what is going on with me. They do there best but still they learn things because of my case and are confounded at times.

Take care!

Wear cushioned shoes and clothes that show your legs like shorts or capris, and ask them to note any change in color of your legs. I would call the hospital scheduling this an make sure which medications you can and can't be on when doing the test. Reschedule if there is an issue there. I wouldn't want to do it again because they made a mistake. Also you can google lab tests and tilt table and you should find a lab site that explains the test, if you want a formal description on how to prepare.

If you collapse as fast as you say, then your test may not be that long. Hope it goes well.

Yes, I think it would be a good idea to have an ep cardiologist involved with any ttt testing, it is possible to go into asystoli duringa a ttt. Just saw that this doc is an ep, that is good, as if he encounters any kind of problem during the test they are equipped to handle it. It is though a question along with it's effects on your qt, that I would discussed with him.

It might very well be that your pots symptoms are due to the cardiovascular and/or virus. With the myopathy of your heart you might also have had damage to your small fiber autonomic nerves, which control autonomic function.

Do you often get bronchitis-laryngitis or other frequent infections? If you do you might also want to look into a primary immune disease.

Hi lissy, I went through the same kind of testing have had a lot of lupus, sjogrens and thyroid type symptoms. Though I did have positive ana's, ssa, sm/rnp and a scalp lesion that pointed to lupus it was not enough to define any of them, though it appears I am heading in that direction. When you have mixed results or not enough positives, there is another diagnostic code they can use, which you might bring to your doctor's attention.

It is called UCTD or undeferentiated/undefined connective tissue disease. The good news is they treat it the same way they would any of the other autoimmune rheumatic disease. Also there are other autoimmune disease that fall outside of rheumatology, depending on your set of symptoms you might look into those if this dosen't pan out. I have it as well as hashimoto and a primary immune deficiency called cvid which causes a lot of infections. I grew up having all my teeth abscessing. These type of autoimmune disease are often found when along with cvid.

All autoimmune disease can cause autonomic dysfunction if they attack your small fiber nerves. This is called autoimmune autonomic small fiber neuropathy and is diagnosed by skin biopsy and qsart. It is very common in diabetes which also is consider autoimmune, but they are finding many other conditions can cause these nerves to be damaged. Good luck and I pray they get to the bottom of this so you can get to treatment. Take care!

Hi, going to chime in! I have hyper pots diagnosed by Dr. Grubb. He suggested my cardio "she get supine and upright serume catecholamines done which consist of norepinephrine, epinephrine and dopamine levels". Mine rose from the 400s to 1000's. Which supported his diagnoses of hyper pots due to small fiber autonomic neuropathy.

If you look up labs and catecholamines, it will tell you how to prepare for the test, includes avoiding some foods and medications. I had mine done at a sonora quest lab and they did have a room I could lay down in. It is important to be very quiet and still during the first part and try to be mellow in the hours before getting to the lab.

Also Dr. Grubb has several articles about symptoms of hyper pots that have been posted here, or you can google his name, hyperandregenic symptoms and the article should pop up. He recently has also found a mast cell reaction cause as well.

Mainly though my symptoms were are significant rise in bp along with heart rate. You can feel jittery, break out in a cold sweat on your brow, feel fatigued on standing, to name a few.

Hi abby, the symptoms your describing sound like Dr. Grubb's description of a hyperandrengic response to standing and/or exercise. Do you know if your bp also goes up to? It is also important to know what your bp does. You can google dr. grubb and hyperandregenic and read his articles. He often recommends a catecholamine test which measures first supine and then standing. Have you ever noticed if your legs change color when standing? That would be a sign of your blood pooling.

He suggests many causes for this kind of response mast cell is his latest, but small fiber autonomic neuropathy is another. The small fiber nerves control all your autonomic functions including your gi tract, which could explain the ibs.

Of course there are many reasons you can have sfn and autoimmune disease are just some of them.

There is another condition you might want to consider. It is called small fiber autonomic neuropathy. The small fiber nerves control all your autonomic functions the digestive track is one area they are found. If you've got some time search this term with gi and see what the results are. This condition can also cause reflux and gastroparesis. There have been a lot of forum members who reported the high heart rate after pregnancy, you are not alone on that. Do you only have a rise in heart rate? What happens with bp supine to standing?

Have they reversed your colostomy yet?

Well that is not always true, in my experience, a rheumy didn't diagnosis me first. Skin biopsies done by my neuro, dermatologist and gyn diagnosed autoimmune neuropathy, autoimmune lupus skin lesion and autoimmune lichen planus, my rheumy only diagnosed a positive ana and it went no where. It wasn't until the other stuff showed up that my derm tested that pointed me back to the rheumy.

There are also autoimmune blood diseases, etc, that a rheumy would not check for. I so wish one specialist could have diagnosed and treated me, but they are so narrowly focused now that things are often missed if it isn't their expertise. I wish there was such a thing as master specialist, to manage my specialists. I have seven specialists and it is exhausting keeping up with them all.

So, Abby this why your symptoms are important they can point you in the right direction.

I don't know if you watch doctor oz, but he recently did a story on reflux. Maybe there would be some information on his website that would help you. I don't know about the surgery you've had. Not sure how a rise in heart rate would effect it.

As pots is a symptom/syndrome not an actual disease, have you looked into what might be causing your pots? Have you seen a neurologist yet? Do you know the reason you had a colostomy. These are both gi issues you are describing.

You are not alone I find this kind of thing happens often. How I get around it is to mainly rely on the lab results only. Labs are unsubjective and are a fact in time. Anything a doctor writes in your record is only an opinon. Which why when you see a new doctor they always want to do their own tests.

I only give my past lab results and written records that I know are factual to any new doctor. Most doctors office staff are happy to give you a copy of your records, if you say you need to bring copies to one or more other doctors, as then they don't have to do it themselves.

As far as the insurance company I'm pretty sure they mainly look at the diagnostic codes the doctor uses. So make sure those are right. They may also request lab results for a medication or procedure they are being asked to cover. In my case we had to prove through labwork that I required IVIG. Most common treatments are covered simply by the doctor's choice of diagnostic coding.

One time when I went to the er I had an abnormal ekg, but the er doctor note said it was normal and both were clearly in the medical record contradicting each other.

Of course it doesn't hurt to send a note to your doctor making the correct, which they will put in your file. I just wouldn't make a big deal about it to the doctor if you like them and want to have your back. A note is a nonemotional way to do that.

Hi abby, There are many tests for autoimmune diseases. It really depends on your symptoms as to which specialist you go to. A positive ana is usually associated with the rheumatic autoimmunes and hashimoto thyroiditis.

Other then the spot on your check what are your symptoms that make you suspect autoimmune disease?

Did you see Dr. Goodman at mayo? If your coming back to az and you want to look into the small fiber neuropathy. Phoenix neurological associates specializes in the skin biopsy for it. They also do qsart, but only for about a year. Mayo may do that one better. Was mayo able to tell you anything and why are they having you come back?

In the home setting have you been able to document a rise in bp/hr?

There are a lot of us in az if you want to get together with any of us when your here. We can a least give you some tips on where to eat and such.

If you are of jewish decent there is one called familia dysautonomia. However, there are also many causes of pots and syncope that could be considered genetic.

I've just started with a genetic doctor because we found I have a defective mthfr gene, which explains some things, but not all the autoimmune stuff. I suspect I have another defective gene causing that. I haven't posted on that yet because I don't know enough yet.

I see you also have hashimoto, so do I. Did you know that it on it's own can cause a high heart rate. How long have you been treating it? I'm still working with my dosage, but my heart rate on standing has improved since starting synthroid. I'm also treating sfn and immune deficiency with ivig.

I saw dr. grubb and he prescribed the labetalol mainly because I swing so greatly. Was your bp rising on standing before you started the atenenol? How do you like the armour?

Hi, it sounds like mayo only tested your large fiber nerves and emg which is done with the needles. Large fiber nerves control your ability to move your muscles. Unless they did a qsart, sweat test or skin biopsy they have not ruled out small fiber neuropathy. SFN can cause sensory and autonomic neuropathy, both symptoms which you report. SFN control all your autonomic functions including breathing.

The rise in hr/bp on ttt shows a hyperandergenic response. Meaning when your the sf nerves in blood vessels don't contract them on standing to push blood to the brain, the body uses it's back up system causing a release in adrenaline/norepinephrine which also constricts the blood vessels. When this type of neuropathy is found the cause of it should be pursued, as proper treatment of cause will improve symptoms and/or hopefully stop progression of the cause. Treating symptoms alone while helpful doesn't address cause.

Hi, I noticed you are on atenalol which also lowers your blood pressure and is long acting. Have you talked to your doctor about this maybe having to strong an effect? I was on it and go hypotensive during sleep. I'm now on a short acting form of labetalol, which I use to lower me when I have to be upright in animated situations.