Frustrated With No Answers

[StephL]

Actually that title isn't quite right. I've got answers, a whole of no's.

I was certain that I had a problem with mast cell disease but I just got my test results back and everything was normal. I can't recall exactly which tests the doctor did but I had 24 hour methylhistamine urine test, I'm pretty sure NE levels, and a couple of others. I'm going out of town tomorrow and then the next week I have an appointment with my neurologist, I'll get the hard copy of the results then so that I can go over them myself.

When they called to say everything was fine, I started crying. My husband got mad at me and can't understand why I was upset that I don't have a disease. He doesn't get it, none of my family does, nobody who doesn't live with chronic disease seems to truly understand what it is like to be sick and want more answers.

My hubby thinks I should just accept that I have dysautonomia and be happy I know that much. I'm not that kind of person. I knew something was wrong with and I diagnosed myself, found a doctor to help, and got results. I know in my bones that something else is going on. My whole family has something wrong with them, some faint, some have seizures that docs said are idiopathic. Almost all of us are "off" somehow.

I'm so lost and confused right now. I want answers, I want to give up. I want to bury my head in the sand but if I do I know I'll keep getting sicker.

Anywho, this wasn't just to complain. I have a couple of questions too.

Lyme disease, how many of you have been tested for it? Is it common that people who present with dysautonomia have lyme disease.

MCAD, is it possible to have it but the tests don't show anything?

Another thing. I have two different reports from MRI's and catscans. The MRI was of my neck, several years ago when I first starting showing the more strange problems. It said I had degererative disease in my cervical region. Then this past spring I was in the ER and the catscan showed I have degenerative disease in my lumbar region. Is it possible that is causing my dysautonomia?

I've posted my symptoms here before but since I don't post often, I will go over them briefly.

Almost always bradycardia, in the high 40s to low 50s is normal.

Moments of tachycardia but they are brief and my heart goes into bradycardia much more quickly than the average person.

Constant nausea.

50 pound weight loss in less than a year.

light headed

anisocoria

low blood pressure that doesn't get high until about 15 minutes upon standing and even then it will not maintain itself

When I had my TTT they said I was very unique and they had never seen a person who reacted to the different tests they way I did. Dr. Randy Thompson said he's never seen a case like mine. My blood pressure was all over the place and did opposite of everything they expected. Several times the report said I should be investigated for diabetes and cerebral damage but my neurologist and PC both blew that off.

I have spoken to one of the people from NDRF and they suggested I contact Vanderbilt since so many of my family members are having problems too. I will work on that this week.

I just want my life back. I know that probably won't happen and I need to learn to live a new life but I don't feel like I can start over until I have the answers.

Thanks for listening.

[issie]

The answer is YES on the MCAS question. It is very hard to catch with science - unless you run down to the hospital within one hour of having a bad attack. My doc is starting to treat some of us that have so many symptoms of MCAS - but, limited scientific proof. I'm on the 2nd week and finding improvement.

I have genetic things indicated in my case too and family members with issues. So, I agree, there seems to be a genetic component.

There are more things that we have in common with what you listed . . .but, I have to run for now.

Don't feel alone . . .there are others of us out there that are hard to treat too. I would look into your methtylation pathways. That seems to be another key (for me, at least).

Issie

[StephL]

Thank you Issie.

I have a whole lot more going on, that was just the brief list. I do believe that those of us with similar issues need to get together and put pieces together. That is why I like some of the polls around here.

I keep getting told that anisocoria is common among everyone and it doesn't have anything to do with this condition yet I have spoke to sooooo many people with dysautonomia who have it.

And that is only one example that we all have been through and heard before.

[issie]

I've also have some autoimmune and auto-antibodies starting to show up. They have been looking for some connection with that for me for over a year and now it is starting to show up on the test. So, thinking this is a key component too.

One other member has the unequal and enlarged pupil issue and he found that there is an autoimmune connection with him. It seems that mestionon was a very good help for him.

But, the GastroCrom also will work on autoimmune issues and cytokines (involved in inflammation). So, thinking this should address most of what is going on with me. Other then the new diet and addressing the deficiencies (methylation mutations) and using proper supplementation ---I hope I'm going in the right direction

Issie

[E Soskis]

Hang in there StephL - you are in this for the long haul - I began to have my first symptoms of dysautonomia in my early 20's and it wasn't until I was 46 years old that a physician diagnosed me with dysautonomia - I've been blown-off by some of the best testing centers - I've been told I was everything from depressed to flat out crazy - You are having many of the same symptoms I have experienced. The thing that caught my eye was your slow heart rate. I wasn't diagnosed with dysautonomia until my resting heart rate was 20-40 beats per minute. You could very well have a type of autoimmune dysautonomia - whether or not you have antibodies present in your lab tests. I think of the antibody test as similar to a cardiac stress test: positive is definitely positivie but, negative doesn't mean squat - you could still have autoimmune dysfunction or in the case of a stress test, heart disease with negative stress test.

Lyme disease can cause autonomic dysfunction and dysautonomia - it is usually a late symptom. If you have not been tested, it wouldn't hurt to check but, probably is not your cause. We all develop degenerative disease in our spine as we age - some more than others. I don't know how old you are or what type of work you do but, it is not uncommon to have disc disease in professions that require a lot of physical demands: nursing, paramedic, construction, etc....

Remember, your husband is frustrated because men are used to solving problems and "fixing" things. They don't like to leave loose ends and they are very concrete thinkers. If you tell your husband you feel bad, he wants to do something to fix it and move on quickly to something else. It is kind of how men are hard-wired - you know, the men are from mars, women from venus sort of thing.....

Dysautonomia is a frustrating group of symptoms that can really take a toll on you physically, emotionally, spiritually, and in your relationships. Just try to understand where your family is coming from and their perspective - hopefully, they will let you explain to them how you feel and your perspective. If you work together as a family unit, then your relationship shouldn't unravel. There will be plenty of times your family and husband need your support for things they are going through - so, it's kind of a two-way street!

[Christy_D]

My son was told by 2 different doctors that he didn't have a mast cell issue. The tryptase test and a 24 hour urine histamine test. The urine was not refrigerated so that blows that test. We went to see Dr Afrin in SC and he did more extensive tests, looking at heparin and PGD2 levels, as well as histamine. The urine needed to be kept cold from start to finish to be tested properly.

So, yes, your tests can come back fine and you still have MCAS. Dr Afrin also said, even if the tests are done properly, and the results come back negative, you still might have a mast cell issue. It is very complicated. Is there any way you can see a mast cell specialist? If not, Dr Afrin was willing to instruct our local doctor on how to have the tests done and which tests to do. We opted to see him directly.

[hippychic258]

Yes many people who have Lyme also have dysautonomia, in fact I know 2 people who were told they have Pots and found out later it was Lyme. Lyme mimics Pots as well as other illnesses. It is hard to diagnose you need to see a Lyme specialist (LLMD). I am seeing a LLMD in November. I have been tested for Lyme twice both negaitve but the standard test is on 30% accurate and positive doesn't always mean positive so why bother with that test????? It is worth looking into if you are not getting any answers.

[ddschool]

ChristyD,

Where is this Dr Afrin located?

StephL,

I am totally in your shoes. I want more of an answer than just dysautonomia too. All of my labs come back normal, & it frustrates me so much b/c of feeling so bad all of the time, why is there not an answer. I've been tested for Lyme's, Lupus, Rheumatoid Arthritis, Sjorgens Syn., cancers, etc w/ no answers.

I had to get a pacemaker for my low hr, & so I could tolerate increased doses of Midodrine (higher doses would lower my hr even more).

Hang in there, and know we are in this boat together.

Take care,

Danielle

[Christy_D]

Danielle,

Dr Afrin is in Charleston,SC at MUSC.

Christy

[FarmerAmy]

Hi Steph,

I just wanted to let you know that I am thinking about you. It is so frustrating to not have answers and to not have anybody to turn to. I feel like I will put a flurry of effort into finding answers, but then I have to take a break for a while. It makes me feel crazy if I focus on my POTS all the time.

Unfortunately I have a few friends with chronic health problems (only one with POTS). I find that it is helpful to keep in touch with them--just so I can talk to other people who "get it". I also see a therapist who deals with people with chronic illness. It is really nice to have somebody to listen and help me sort through everything.

Sorry you're having a rough time

Amy

[NMPotsie]

Not sure if this is useful, but I had some of my allergy tests prior to the labs. I started the urine methlyhistamine right after, as well as some other ones (I can't remember which--prostaglandins, maybe?). They all came out high. The only one I believe I had prior to the allergy test was the tryptase.

I downloaded the mayo clinic app for ipad and it gave me comparisons for those tests I had had previously but didn't realize they were significant for mcad (the tryptase, for example). My numbers were a lot higher this time for those tests that were repeated (for example, last time my prostaglandins were 725; this time they were nearly double that). The allergist wanted to see those numbers after the test because it would reflect what happens when my allergies act up. It might be worth a try to have your allergies "stimulated" through a test and then get those labs. However, as Issie said, you can still have MCAd and not show it on any tests. They are looking for residue of a reaction and that stuff clears your body pretty quickly; the tests aren't for the disorder, they are for evidence of the disorder. Your history can tell them a lot, though. I took pics of my rashes with me and had several reported flushing episodes witnessed by docs; all this seemed to convince them even before the tests.

I have no idea if this is useful; I may be a weirdo.

[anaphylaxing]

Yep, I'm being treated as ?MCAS without diagnostic proof other than symptoms and response to meds which fulfill two of the diagnostic criteria.

Good enough for me since the meds and trigger avoidance are working.

[StephL]

I just woke up and trying to get ready to head out of town for the week. The fog is too thick to read and abosrbo all this right now.

I did want to say thank you to all you for responding and when I get in tonight, I'll take the time to read it more thoroughly.

[ddschool]

Thanks ChristyD! That is much closer for me than Vanderbilt where I was thinking of going!

[StephL]

I have an appointment with my neurologist Tuesday.

I chose her because on her web page it said she tested for dysautonomia and I was so excited to find a local doctor that knew something about it. I have my doubts about her but I'm trying to stick with it for a little longer. She did an ansar test on me, said the results indicated that midodrine is what I needed and just put me on that and sent me out the door with a recommendation to see a kiniesologist for my emotional issues. (My father died almost a year ago and all the docs have decided that his cancer and subsequent death is why I'm sick. I've stopped telling doctors that I lost my dad now.) Anywho, I'm a very skeptical person and telling me I can go see someone two or three times and they will release my lifetime of issues didn't set well with me. I did the research and spoke to two people in my family who are in the medical field and they both said to try it. I was going to but I can't afford it since it's not something insurance covers.

My point here is, do you guys have any suggestioins that should ask for? Tests? Possible conditions to be tested for?

Besides getting the normal lab work that everyone gets, every few months, I've had my cortisol levels checked, histamines, tsh 3 gen, ferratin, transferrin, tissue, transglutaminase antibody IGA TTG, Antibody, IGA, gliadin antibody, immunoglubulin A. I believe she also tested my norepinephrine levels too and said they were normal. I don't have my hands on the actual results from the last labs yet, I'll get those on Tues.

I have problems on and off with my urinary system so I plan on asking about nutcracker syndrome too. I also want to find out about my sweating and plan on asking for a qsart. I haven't had a brain scan in at least 4 years and I've never had a spinal scan other than my neck and then whatever shows up in abdominal scans, so that might be a good thing to do.

Do any of you have opinions on Ansar test? It didn't seem nearly as accurate as the TTT.

Have you had or heard of sympathetic neuroimaging test? Apparently they can use this for my heart as well as my noggin' to see if there is any nerve damage.

Just for inquiring minds, I am 40 years old. I have had strange symptoms my whole life but I'd guess that puberty is when they got much worse.

[StephL]

I'm pretty close to done with my neuro. I hate to be negative but she seems to have given up on me for the most part.

I told her I had to figure out what was going on and she told me that I needed to brace myself for the real possibility that I will never know. She said she has little faith that any doctor will figure it out and that I'm not alone, which is why she is turning more towards Eastern medicine. She's been pushing since day one to go to a kiniesologist. At first I was skeptical and then decided to give it a try. After I found out the costs and that it's not covered at all by insurance, I decided I just couldn't afford it. She backed off after I told her that.

She did agree to do a lyme diseast test and a head MRI.

If those come back fine, I am going to find a new doctor...again.

Here are the results from my 24 hour urine collection...

Epinephrine 5

norephrine 27

Total (E + NE) 32

Dopamine 255

Tryptase 5

Methylhistamine 158

Histamine 0.012

Creatine concentration 212

creatine 1.25

Apparently that is all normal.

[issie]

I know that must have been hard to hear her say that . . . .but, for some of us that may be true. I wish I had a doc. who was open to Eastern/alternative medicine and could guide me more with that. There is a lot to be said for 2,000+ years knowledge of herbs and meds.

Issie

[StephL]

Issie, She swears by kinesiology.

She said that she had too many patients like me come to her and say they got relief in a few sessions and that is why she started looking into it.

I have a hard time wrapping my head around it but after talking with family members who are in the medical field, I decided to give it a try. It's just too pricey though, for me. If I really believed in it, I may scrape together the money but honestly I believe in the hard work of scientists and if something could magically cure you, they would have been all over it.

That isn't to say that I don't believe in some natural or Eastern medicine but there are some things that are just too much for me.

[issie]

What about a TCM? That's what I was thinking --not network kinesiology (muscle testing). I'm not convinced about that either (and I don't think it is really explained well by science) and I've been around a whole lot of alternative type things. I've had chiropractors who once believed in that - tell me that it isn't accurate and can change from minute to minute. He also said it would depend on what surface a person was standing on. So, I'm not at all convinced about that one. But, some Chinese type meds and looking at the different constitutions and pulses and what goes along with that ---may be beneficial. I've spent LOTS of money trying different herbs, vitamins, minerals etc. Some have helped and others not so much. I think there is more science involved in what a TCM doc would do. There is more history and more knowledge of the herbs used and for what type person. That's the only type of doc - I haven't been to. And, if what I'm doing now - isn't successful - will be the type of doc I will look into. But, right now ---I think science is with me. I'm having some better results.

Issie

[NMPotsie]

Steph I had several urinary tests and many did not show anything other than normal results. A couple of times they tested my urinary cats and they were normal; the only time they showed high was immediately after an actual surge. When I did the plasma cat test where they take levels laying down and then standing up I wasn't symptomatic at all and they were still pretty high. I wouldn't entirely trust those urinary tests. The same is true for the urinary methlyhistamine--it is supposed to be collected in a 2 hour session immediately following a flushing episode; 24 hr collection random collection results often show normal but don't really mean anything. Those chemicals clear your system pretty quickly.

Ask for the plasma catecholamine test--you can even get the directions from the Mayo clinic catalog and get a local lab to work with you; someone I know got one done at the hospital and they sent it to Mayo.

For the urinary methyl, most labs don't do it correctly; even mayo does it in a 24 hr span. I'm not sure who does it right, but if you did some research you could probably find out. I wouldn't give up yet on your search. If you have to spend a bunch of money on this alternative doc, why not use that to take a trip to a clinic or pots specialist? I can say from my own experience that it is well worth the money.

[StephL]

Sometimes I do feel like I know more than the doctors, about these types of conditions anyway.

Actually, I do know more than the most I've seen. I'm not bragging, I've just done so much research and my local docs haven't even heard of some of this stuff until I bring it to them.

I've been to Dr. Randy Thompson. He was great but he's too far away for me to see on a regular basis. He is more than willing to work my doctors here but no one seems to want to call him and run things by him. In fact my neuro, who's pretty much given up on me, ran me through an ansar test and keeps reffering back to it, "Well, the ansar test says the medicine you should be on is midodrine. If you don't like that the ansar test says the next medicine to try is nortriptyline." I have issues with her basically plugging me into a computer and it spitting out results after 12 minutes of testing me.

The day I had the test done, my pulse was in the 60s, that is rare for me. She never once looked over my TTT results because she is trying to prescribe me stuff that blunts the heart rate when mine is already pretty darn low. She uses that ansar test and ignores all my other issues. I was so excited when I found her because she was the only person I have found locally who said they test for autonomic disorders. Now I think she just bought some fancy machine and doesn't really know squat about the condition.

I really need to get some paperwork done for Vanderbilt. I've received and email from them that gave me the impression that they are interested in my case, possibly my whole family, but I need to get the papers filled and faxed.

Thanks for the info on the urinary tests.

Right now for my sanity, I need to do this in small steps. Like I'm waiting for my MRI and lyme disease results. If/when that shows nothing, then I will make a couple of other decisions. I can't remember if I mentioned it before but I have a good friend with hep c and she has a gastro doc that she swears by. He has two ladies on staff that do nothing but research for him. Apparently a lot of people go to him for unexplained digestive issues. I know I have a neurological problem but my stomach problems and heart problems are my worse two symptoms. I may seek out an electrophysiologist for my heart, we'll see.

What I would really like to know is, is there anything we can do to get my baroreceptors/baroflex back on track. I'm pretty sure that is the one thing that is directly failing in my system. Several comments in my TTT reports show that I have issues with that. I asked the doc and she just said exercise is the only thing that will help. Exercise is a whole other issue for me, I'm not up to typing all that out right now.

[tigerbomb]

Hmmm...I have to say, if a medical doctor was pushing me to go for applied kinesiology, I'd run as fast as possible in the opposite direction. Years ago, a chiropractor talked me into doing it. It was very silly (and totally ineffective). To be clear, I'm not anti-alternative medicine at all, if it's supported by evidence (like acupuncture and some herbal remedies).

Anyway, I'm also trying to get a mast cell workup, and the more I've read, the more complicated it seems! Yesterday, I found a presentation that Dr. Afrin gave at Women’s College Hospital in Canada last year that includes PowerPoint slides and a transcript. It's long, but it's a really good insight into how the expert thinks! I'm going to try to get my immunologist to read it. The most important thing I took away from it is that MCAS is extremely variable in presentation, and lab results are extremely variable as well. So, he looks at the levels of mast cell mediators like heparin, PGD2, and histamine. You can read it here: http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20with%20Slides.pdf. The part where he talks about testing for different mediators starts on page 50.

Good luck!

[issie]

Tigerbalm, Can't get that to open. Hummm.

Yeah, kind of my thoughts on network kinesiology. Although, I've been around an awful lot of people that believe in it. But, I haven't had anyone convince me of the science of it. But, I have seen that certain things may make a person stronger or weaker - but, it could just be a suggestion of their own minds. Too many variables and possible reasons for the results.

Issie

[issie]

That's one of the better articles I've read on MCAS. (It finally came up - kinda had to search for it. But, got it.) It so explains so many of our issues. It's just getting the right combination for us and we may all have to do different things to get the results. Will be pursuing this further. Still feel like I need more here. Thanks for the link! Tigerbomb, Just wondering if maybe it could be posted on a thread by itself - as maybe more people will read it. I think that this may be more of an issue with us Potsies then is presently known.

Issie

[tigerbomb]

Issie, I'm glad you found it! I think that this link might be better: http://www.mastocytosis.ca/peliterature.htm (then go to View/Download full transcript with slides PDF). I'll be happy to post it on a new thread - I think you're right that it will be of interest. I'm going to try to write up some brief notes on it first in case people don't want to slog through the whole thing

Have you read the article Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options? There's a lot of overlap in information between the article and the presentation (after all, Dr. Afrin did coauthor the article), but I liked how the presentation included individual case studies. I think it's probably helpful for a doctor to see how different MCAS patients might present, especially because it underscored how you need to look for a pattern of symptoms.