arizona girl

Okie dokie, I had a brain fart here. I typed the wrong letter. The test is called an A/G ratio and is part of a CMP panel.

Here is a link to the info on those tests: http://labtestsonline.org/understanding/analytes/tp/tab/test?gclid=CLGNjI_X-7wCFdTm7AodMEMACg

Sorry if I confused anyone.

Hi ND,

Along with your albumin test on a cbc there should also be a test called an AG/ratio. If that is abnormal too, then it would point to something being off with the immune system.

I had abnormal ag/ratios and albumin's for years that no one attended to. Eventually my neuro tested my total quantitative immunoglobulins and I turned out to have an immune deficiency, which we are now treating with ivig. When you have an immune deficiency you also don't produce antibodies properly and can have other autoimmune diseases on board which may or may not show up when antibody tests are run.

Do you ever feel like your fighting an infection or have an obvious cold with no fever? I also had low very low d and treat it with D3 supplements. Just for reference I did have positive ana's on and off and hashimoto, also skin biopsy and autonomic testing proved small fiber autonomic neuopathy and lichen a skin autoimmune disease. I was first diagnosed with fibro, which I now know was really just symptoms of the illnesses I was finally diagnosed with.

Hope that give you some insight from a fellow potsy!

Sorry that this is what it is turning out to be, but there is some relief in putting a name to it. Now you can start the fight and as Lmom mentioned you will have a variety of treatment options available to you. I have been on both ivig and plasmapheresis and also treat with immune suppressants. I'm available for support and tips when the time comes having been down this road already.

Looking back the hardest part of the process was the not knowing and the diagnostics journey. Right now for me there is no cure. We still need to tweak my treatment plan and I still do have setbacks here and there, usually when I over do it. Mostly though I've had improvements and we are managing it better then without the treatments. I have sfn autonomic neuropathy, cvid and a couple of immune diseases.

The treatment plans though mostly run the same road map as your diagnosis, with the exception of a possible cancer. We have carcinoid members on the forum that manage even that very well. So, even the cancers can be dealt with. I least now you have a name you can research. Sounds like you've got the right doctor on your team. It makes all the difference. So hang on to your hope and find your moments of Joy!

I had a joyful day spending time with my two god daughters yesterday! I'm still smiling today! Find those moments while you go through the rest of your medical journey, like that old calgon commercial, they will take you away for a bit.

Yes, I've been like this for the last few weeks, especially this week. I just want to sleep but until new years eve, I was only getting a few hours at a time. Once I finally was able to sleep on NY eve (long nap and asleep before 9 pm-I missed the ball drop ), I felt better the next day, until I tried doing stuff again. When I get this fatigue it incapacitates me more then the bad muscle spasms I had the week before. The only way I'm able to shake that sleepy overwhelming fatigue for me is to just do nothing and rest and pray for a long nap or long nights sleep. If I can get enough sleep in then the spell will usually pass. Since my treatment plan has been working, I don't get these spells as often as I used too. They could last for weeks in the past.

I haven't figured out the triggers, maybe female cycles, I did just find out the my FSH is finally at menopause levels, even though I'm still getting it. It will be interesting to see if I feel better once I stop getting it for good.

I've learned to let my body sleep if that is what it wants, sometimes 16 hours is just what we need.

Good to know. I will e-mail you!

Check your settings, maybe you have them set to not accept messages.

Rama your pm's are full I think. I tried to pm you and it says your not receiving messages.

It is really good to see you again. Really missed you! Hope you are doing well.

The test your talking about is called an emg is it is done only to check the function of the large fiber nerves. Those are the nerves that control your ability to move your muscles.

Small fiber nerves control all the functions your body does without you thinking. This includes the sensory nerves which cause the burning pain association with peri neuropathy often associated with diabetes, but can also be caused by other conditions including autoimmune diseases.

Unless you've had a skin biopsy or a qsart test, then the small fiber nerves haven't been tested. If the sfn's are damaged there are different treatment plans available to manage it depending on what caused it. Fainting and pots are separate autonomic issues. They can coexist though. High heart rates on standing don't necessarily cause a faint. Faints are usually associated with a drop in blood pressure.

Here is a link to an educational webpage and webinar done in november 2013 for the Neuropathy Association.

http://www.neuropathy.org/site/News2?page=NewsArticle&id=8549&news_iv_ctrl=1101

Are you in the care of a neurologist? Are you diabetic? Your symptoms sound like some form of neuropathy. There are other treatments available if you can determine what type of neuropathy and what is causing it. The neuropathy association has a list of doctors that specialize in neuropathic pain and can screen and test for small fiber neuropathy, etc. They also are usually up on autoimmune neuromuscular causes. Diabetes is often the most common cause, as well as hyperinsulinemia that proceeds the start of diabetes. Your best hope is figuring what is causing the pain and fainting/autonomic symptoms. Hope this give you a place to start looking.

Okay! They are similar and sort of the same and both can have various causes. A proper skin biopsy or qsart test will prove small fiber neuropathy including autonomic. Diagnostics are usually based on your symptom presentation. More pain would mean sensory/peri neuropathy/crps, more autonomic symptoms would point you towards autonomic neuropathy with both neuropathies it is called polyneuropathy and you can have all three diagnosis together. I have SFN an my guess is that the CRPS is probably some kind of small fiber neuropathy, not the other way around. Anything is possible though. Your treatment plan will depend on what other diagnostics your doctor will need to do, to see if he can determine cause. These neuropathies are often the result of another illness from diabetes to autoimmune disease.

Time to discuss further with your docs what the potential causes could be and what further testing should be done.

What do you mean by crps?

Sorry, It looks like they unpinned the post it was in the farewell one to her that was pinned. The story might also be in one of the newsletters. I know she is managing it well enough to just be finishing up law school. I'll ask around if you can't find it. I don't have time to look for it right now.

The Katie Couric show just did a story on EDS last week. I think you can still see the video on her website.

Our founder Michelle did. You can read her story at the top of the forum.

Hi teagirl,

No worries about a rambling post. We've all done that. I've been on a different brand of IVIG for a couple of years now. I have autonomic small fiber neuropathy documented by skin biopsy, I also had very abnormal ttt and am hyperandrenergic with a significant rise in norepi on standing. Like you my body was on a roller coaster ride. I also have 3 autoimmune diseases that didn't completely show by antibody testing. Biopsies proved two of them and blood test antibodies for hashimoto were finally caught. I have had a known high ANA for years. I qualified for IVIG when we found out my total quantitative immunoglobulins IGG and IGM were low. Just wanted you to have a point of reference about my path. I hope it works out with your insurance. If you tested positive for any of Mayo's dysautonomia antibodies that is a covered diagnostic code. The small fiber autonomic neuropathy isn't always covered, but it is being used off label. If you have a polyneuropathy diagnostic code it might be covered that way. I think Mayo will try and work with you and the insurance company to get it covered. It is very expensive without insurance. The insurance is also billed for way more then they actually pay. The going insurance rate that is paid is $4-5 thousand per monthly infusion lower if you have less infused.

Sorry about the headaches and fatigue they do happen, but there are things that can be done to hold them off. From my experience the first infusion course didn't work, we actually had to switch to privigen after 4 months my side effects were so bad on carimune.

It took probably another four months on privigen before I started noticing improvements and I have had slow improvement since then. After we added in plaquinel and cytomel for autoimmune complex, I had further improvement. I'm not cured by any means and withdrawal of any part of my treatment plan triggers a flare up. For me for now at least we are managing it. I still don't travel well and can't do as much as I would like, but I'm better then I was.

It has been documented that many autoimmune disease trigger autonomic neuropathy, so it certainly can be a consideration. There must have been enough cause with you for Mayo to offer it to you. Many never get that opportunity even try it. I've never tried any of the sups so I can't speak if they help or not. I'd go with the guidance of my doctors on that one.

I remember how difficult the diagnostic process was and am so grateful to be on the other side of it. It still takes strength though to manage the specialists.

Since it is probably to soon to know if the ivig is beneficial for you. Have you taken a closer look at the other meds, since starting those. Though they work well for some, others get worse and they can't stay on them. Did you notice an improvement on those meds?

Know you are not alone, there are many here that understand what you are going through. We eventually learn a new normal and find ways to not let the illness rob all our Joy. Take care!

I've seen one before. I don't think age is an issue when it comes to the patients they see. There were all ages where I went. Whether they are helpful or not really depends on the type of pain one has and how good the doc is. A lot of them treat with steriod injections. There can be lots of side effects with steriod shots. I have endocrine issues and the shots caused weight gain and threw my labs off. They do offer other treatment options and there is a nonsteriod one called traumeel which I felt worked for me without the side effects the steriods have.

When I go I try to find a doc with a good rep and do some research on the services they offer a head of time. My experience was it did help with short term pain, but not so much with long term. They also prescribed me an antinflammatory pain patch called the "flector patch". I still use those when I flare up. There expensive, but I think they work well. I plan on using one over my SI joint tonight, as I had a bad fall in a parking lot yesterday. Thankfully I didn't break anything, skinned my fingers and right knee, messed up my back and hip. I'm really achy and stiff today, but it could have been worse. I have a decent chiropractor, so I did see him today and that helped some. A lot of the chiropractors offer medical massage now. My insurance actually covers it, and there is a no tipping policy in most chiropractic offices. It is also more affordable then say a massage envy type of place. I can just go in for the massage part too and not have to get an adjustment. I've used a combination of chiro and pain doctors and that combo works good for me.

Hope you find someone to help you!

DSD,

Maybe you've just forgotten how rough the first few infusions can be. If you are getting infections so much you likely had something brewing during your infusion. Which as I now know can make for a rough infusion, as it starts going after those bugs. Infection alone can mess with your orthostatics. Also my reactions symptoms got better over time. Though we finally had to add some hydromorphone and/or diazepam to help with the headache or the tight neck. (the drugs never together) I get real dried out from the benedryl so I add in the active ingredient in mucinex to moistening things up. BTW a high dose of benedryl or the steriod they give you to control reaction can make your orthostatics rebound afterwards. I don't take the steriod anymore because of the pcos and only 25mg of benedryl now, along w/tylenol. So that is how I'm managing reaction now and it's going pretty good, infusion still slows me down for a few days though. Takes 5 days before I passed the possibility of getting the headache.

After reading what your telling me about your issues with antibiotics and frequent infections. I think it is wise your doctor put you back on. The whole point of ivig is to lower infection rate, to reduce the amount of antibiotics on board, so when you do need them they are effective. The more antibiotics used the less effective and for you sounds like you build up an allergy. Of course do keep an eye out that you aren't building an allergy to your privigen. If it seems to be more of an allergic reaction then your doc might be right to switch you, I've heard good things about gamma. They also might need to look at treating the reactiveness that is causing the allergic reactions. Maybe like how the mast cell group on here are doing. Also, have they used rocephine shots on you as an alternative to oral antibiotics? My gi track can't handle the orals because of my yeast resistance and the shots work as good as my iv antibiotics did. It also means you don't have to be on weeks of oral anti's. Usually one shot knocks out the infection, the most shots I had to have was 3 over two week period. We recheck my wbc a few days later and add another shot if it's still up, and so on. Then I have to go on diflucan because I always get the candida after anti's.

Have they checked your total immunos before and after infusion? Your levels might be higher then you think and two weeks apart may be two close together. Also with the amount of infections you are getting the standard 40 grams for cvid/hypogamma may not have been a strong enough dose for you, and why it seemed to be less effective over time. At the gentle strength cvid support group, this is a common complaint that, that dose isn't enough to keep infection down. The thought now is that a patient should be dosed at the amount that is effective for the indvidual, and the right amount is when the infection rate finally drops. I'm on 70 grms and started out with two of those a day apart in the beginning, we have reduced me down to the 70 at one day a month now.

That is so interesting that your neuro diagnosed the neuropathy, mine did the skin biopsy and found the small fiber damage, but I couldn't get ivig for that, thus the pheresis first. I also had severe hyperandrenergic dysautonomia. They found my low immunos later too, which then qualified me for ivig. I wasn't running fevers with my infections, even though I would have all the symptoms of infection and be hot to the touch. After the low immunos where found then we started checking my cbc w/diff, when I'd have symptoms and what do you know I'd have very high wbc and elevated neutros which point to bacterial infections. I'd been living like that since I was a kid and I'm very luck my IGA was still intact and my body could fight some of it off. As you well know any infection when you have cvid can be the one you can't fight off and then your on your way to the other side. It would be an interesting story to hear how your doc got it approved for the neuropathy, unless you with also positive for the mayo antibodies.

As for the sub q, on the Gentle Strength cvid group, many love it as there can be much less side effects and because you do it weekly it keeps your immuno's stable. The leader of the group had the sinus issues like you with constant infections and after switching she hasn't had any infections in a long time. So that may be a good option for you. I couldn't handle the idea of sticking myself once a week. Since my ivig schedule seems to be working for me, I'm sticking with it for now.

What neck of the woods are you in, as it sounds like you have a good neuro and immunologist. Both of those are hard to come by. What med did your neuro put you on that didn't work?

Hope my story and experience with this was helpful to you. It does help having someone to bounce things off of.

I hadn't heard of that necklace one. Was that rough to put in? Did you have the one in your arm first? Was kinda of wondering because if the ivig and my current treatment plan fails me adding plasma back in is one of the options. My neuro already offered that to me. If the plaquenil hadn't helped with the autoimmune stuff I might have had to go there already. My only other option would be imuran. Methotrexate is out because I'm homozygous mthfr. So my options are limited.

Those chest toggles were so hard to even take a shower with and they were so obvious I hated them. Then the infection and the anemia, I was relieved when the ivig became an option, however the carimune was brutal I gained weight had terrible headaches and reactions. I have pcos so the sucrose in it was like adding gasoline to a fire. Once we switched to privigen most of that went away but it still took a bit to see improvements in my autonomic symptoms. The weight didn't come off and that is when we found the hashi, and two skin biopsies showed I had lichen and a lupus like leasion. I'd had symptoms of all these auto's for years but either the antibodies weren't tested for or the ones that were positive weren't specific enough.

I'm so sorry you had to deal with the blood infections that is scary. I'm sorry I probably read somewhere what your getting your plasma for, why are you getting it? Yes, I agree with you we all come to dysautonomia from so many different sources, our treatment plans really do need to be unique to our own circumstances. We are lucky if we can find cause and not just be labeled idiopathic.

I'll keep you in my thoughts that there are no further infections now that the necklace is in place. BTW is that visible? How often are you getting your exchange?

I'm so glad plasma is working for you E. It is funny though as I was on that first and I did have a very quick response of my autonomic bp/hr swinging calming down. I had a hard time with it for the long term, as I got and infection and anemia while doing it. I had an implanted catheter toggles hanging out of my chest for 4 months. I realize if I had stayed on it they would have done the port in my arm, which would require further surgery. Where I live it also required I go to a hospital, which also can expose you to infection from other sick people. IVIG for me was rough with the first brand they put me on. Once they switched brands it took longer to get symptom improvement then the plasma, but I have had improvement and appear to continue to improve with the addition of treatment for the 3 companion autoimmune diseases I have with it.

Thankfully, those are being treated with thyroid meds and plaquinel. To also answer DSDMOM Of course I'm getting the ivig for an immune deficiency not an autoimmune disease. I'm on 70 grms infused once a month. It is a bit higher as my neuro is also using it off label to treat the autoimmune small fiber neuropathy. I'd say my infection rate improved after the first six months to a year. I've only had 3 infections that were treated with rocephine shots since starting. My IGA was intact so I was not getting respiratory infections but was getting other types of bacterial and fungal infections. I still struggle with yeast as I have no resistance to it and ivig doesn't seem to help with that one.

My Igg was in the 150's and I had no IGM, those both are now just above the low normal range the day before I get my next infusion.

What kind of infections do you get?

Hi, Well I've now been on it about two years. Maybe I can help you figure it out. Brand alone can make a huge difference. I would need to know a few things though about how your getting it to trouble shoot for you. What brand now, what brand before. How much are you getting per infusion? How fast or what is the infusion rate? Are they giving you premeds?

I also had low igg and igm. I also have a few autoimmune diseases along with it and improved more once we added those treatments in. My infection rate dropped dramatically.

If you don't mind sharing a bit more about your symptoms and types of infections your getting, that would help too. This summer I pushed my infusion schedule around and ended up 6 weeks apart, by then I had another infection, which sometimes are hard to tell without getting a cbc with dif done. If you always feel like crap hard to tell if its just another crappier day or if you've got an infection on board. My fevers are very subpar. Well I got my infusion that time without knowing I had an infection, I had a rough couple of days, pain and aches like you get with a bad flu. So, yes I do think if your fighting something when you get your ivig, it goes to work and you get worse symptoms or side effect then usual. At least I did.

Hope that helps, a bit. Look forward to hearing back from you.

So happy to hear you've done what most of us have learned how to do. Get ourselves up when we are down, literally. We are more then our bodies and we can still find joy and purpose even if our bodies don't cooperate.

My bp goes up too. Prior to my TTT I only had near syncopes, as I usually got myself down fast enough not to faint. I'd learned to compensate without realizing I was doing it. The only time I did syncope was on the TTT after the nitro under the tongue. It has never happened in real life. So no need for your confidence to take a beating if you pass out. They are forcing it during the test.

So, I have some tips for you from my experience. Wear very cushy comfortable shoes and socks that clear moisture. I just wore socks and it was really hard on my feet and they stained black from my socks getting wet. Wear shorts or cropped pants, so the doctor can visualize color change in your legs. If your pooling they will change color. Make sure they have an appropriate bag for you to use should you get nausea. I almost lost my cookies and they handed me one of those silly shallow plastic bowls.

Before they start the test make sure they have you supine long enough that your bp/hr get to your normal baseline. As my bp goes up when I talk, my bp was high at the start of the test from talking. I still failed but it would have been nice for them to see how low I go when supine. So try to be calm and quiet before they tilt you up. Don't worry about the pass out, they will put you down as soon as that happens and you come right out of it. They should give you IV saline after the test, it will help you feel better. Make sure you have someone drive you home.

I won't lie the middle part of the test is not fun for those of us with dysautonomia. All the symptoms that you are good at avoiding and compensating for will present. My legs started contracting on their own trying to get the blood up. It is amazing what our bodies do to keep us going. The test helps us appreciate that. It also gives you a better idea of what your early warning systems are, so you can avoid things better in the future. So, pay attention to your symptoms during the test. If you do pass out that is really good info for the doctors to have. My results were that I had hyperandrengic pots with syncope. That is two forms of dysautonomia not just pots. My dysautonomia though is a result of small fiber nerve damage caused by immune diseases. As my cardio said "There is not cure yet, but we can manage it and you can live with it." Treating my immune disease has helped improve symptoms. So have hope, all is not lost. We just have to learn our new normal. I have found many gifts and silver linings that I would not have had I not gotten sick. Try to look for those.

Take care now and keep us in the loop on how things go!

Good study, but I didn't need the study to know this is what is happening to me. It though was nice to have confirmation explaining my symptoms so closely. I also have confirmed small fiber neuropathy of the autonomic nerves. Though of course my medical record is calling it irritable bowl syndrome when it comes to the gi symptoms. Which I think IBS really stands for something I can't say here, I. B. S.!! Use your imagination.

I believe my messed up motility and my hypogamma are contributing to recurrent yeast infections in my bowl. When I'm on extended diflucan my bowl symptoms improve. I have no resistance to yeast according to a skin antigen test that was done.

So, at least I know what's happening and there is some treatments that help, but I have yet to figure out what is triggering the cyclical flair ups when things decide not to move.

Hi all,

It is interesting how we all respond so differently to the different meds, even when we all seem to have hyper pots. I was on atenenol and it was to long acting so I was having supine hypotension when sleeping causing poor sleep and I'd wake up rigid and in pain. Propananol made me gain weight. So, if your skinny that might be a good thing. In my case as I have hashimoto that was not good for me. I also have pcos without elevated androgen/testosterone. There is more then one form of pcos, I never had the increase in hair that is common. The best med I've used for PCOS is a form of glucophage, I take glumetza which is easier on the gi track. I lost 25 pounds just from going on it. My insulin level that was crazy high in the 60's and 160 on GTT/ITT test are now down to 14 for the first time. Whew Hooo! I'm down 4 pounds too. I can't help but feel the high insulin may have been a result of the increase of norepi on standing, I went up to almost 1200 on standing.

Then clonidine was a nightmare for me, I responded like an addict with my body wanting more and more to keep me down. Coming off it was intense. After that Dr. Grubb gave me the a low dose short acting form of labetalol that I can tirate up or down as needed. It has worked well. With treating my causes though my hr/bp responses are much better, I don't swing as wide as I used to. I still have my days though where I get spikes. So it's not perfect.

Alex thanks for all those great links!

Welcome!

Since your already going to Scottsdale Mayo. The doc to see there is Dr. Goodman. He can do the appropriate autonomic and diagnostic tests. Lots of different things can cause dysautonomia. You may be able to rule some of those out at mayo.

I live in chandler and grew up in scottsdale. If you get stuck let me know. I've slowly managed to put a team of docs together here. We have several members that also live here. So your not alone with the illness or here in arizona.