arizona girl

Dani, Can you check to see if any of the doctors at Phoenix Neurological Associates in Phoenix are on your plan. Go to their website to see the doctor's names. Mine is Todd Levine. They are currently partnering with Mayo for epilespy. But they specialize in neuromuscular diseases like ms, als, neuropathies, stiff persons, etc. What autonomic tests or other tests was Goodman asking for? I can check to see if they are the same ones my doc did. Phx neuro does qsart and skin biopsy, plus a lot of rare disease blood labs to try to find cause. They also specialize in other types of muscle biopsies. Maybe it would be possible for goodman to partner with one of the docs at phoenix neuro, for patients like you who's insurance won't cover certain tests done at mayo. BTW Dr. Levine is part of group of docs that are very interested in the autonomic dysfunction issues seen in pots and neuromuscular disease. They have I think a discussion group that meets online regularly. One of my goals next time I see him is to see if he will disclose the names of the doctors and where they practice. There is only a small group of neuro's who specialize in this area of neurology. Hope you and your growing baby are doing well as can be expected.

Me too, I can't watch those 3d movies or those movie 3d rides. So one and barely made it to the women's sink in the bathroom. I notice if I'm in a store or mall I can't look and walk without feeling dizzy.

It depends on the autonomic center what other tests they do during your tilt. Mine they only were measuring heart rate and BP and an ekg was hooked up to. Some center's look at the other stuff like the hormones. What did your doctor tell you there were going to measure. A positive test will show an number of abnormalities. Hypotension, syncope, 30 points or greater in HR from supine, it can also show orthostatice hypertension. That is what I had, I went up up and was still standing, then nitro still went up then a sudden drop and syncope. Later I had supine and standing catechcolamines. My norepi went from 400 to 1300. A positive test so I guess I have the hyper kind, but that is only because my body is still compensating by producing excess norepi to keep oxygen in the brain. I pretty sure if I couldn't do that I would be hypotensive on standing.

Hi babis, I'm so happy you are improving with IVIG. Thank you for the update. I also am on privigen for autoimmune sfn neuropathy / hypogammaglobulinemia. I also was just was diagnosed with hashimoto thyroid and autoimmune lichen planus. I had symptoms of both of those for years prior to any treatment and can't believe they went undiagnosed for so long. My docs are saying I have an undefined connective tissue disease UCTD. I didn't have the mayo panel done, it would be interesting to see if I tested positive for it. Since I'm already getting treatment though not sure it is necessary. I'm curious about your treatment dosing. I started with 70 grms a day for two days every four weeks. We are reducing me down and I am now at 45 grms a day for the two days every four weeks. I have had some improvements too, but I am now wondering if the reductions are flaring the other autoimmunity issues. What specific kind of symptoms did you have that have improved and have your doctors told why they have you on the dosing plan they have you on? Do you know how much they are actually giving you? I agree with you that many of us are only getting symptom treatment, which is helpful, but if you have something more serious going on symptom treatment isn't going to stop the progress of some disease states and you will continue to get worse though you may be managing some symptoms. When I saw dr. grubb in toledo, he said that they are continuing to find more of these kine of autoantibodies. He said they had found 5 already when I saw him two years ago. If it makes you feel any better my cardio said I and patients like you are trail blazers and we are paving the way for those that come behind us. So, even though it has been difficult for us our struggles will help those that follow. It gives me some comfort to think that it is true.

It is hard when that cold water gets splashed in your face and your not prepared for it. Big Hug! While your not mourning a death of a loved one, it still is like a death of you and your dreams of what you thought your life was going to be. We do go through all the same stages of accepting loss of what should have been. It is normal that you feel this way. I some point you will have accept it and you will have a new normal. Try not to let depression seep in to much and know that your new normal will bring blessings you never expected. I've found that if we look there will always be a silver lining and new purpose. Illness dosen't change who we are or who we were born to be. We are not our illness, even though it changes how we function. You are fortunate that you have LTD. Your job loss will only make a stronger case for your ssdi claim. I made the mistake of not filing, because I kept thinking I would get better once we figured out what was wrong. So please note to any of you out there that are considering filing for SSDI make sure you do so sooner rather then later. There is a stale date for filing. I would have to go back and earn 40 credit hours in order to qualify again, and if I was able to work enough to earn them back I probably wouldn't qualify because I was able to work. I'm already 54 and would be retiring by then anyway. I was recently informed by some one that there a possibilty that I would qualify for early retirement due to disability. I would need to contact a lawyer though to find out if that is true. I'm in az if anyone knows any good disability lawyers. Jenn I will continue to keep you in my prayers! I'm am so hopeful that figure out how to get you on your feet again.

I had mono around 19, but my near syncopes and motion sickness started as a child. After many years of symptoms and feeling sick all the time I was found to have small fiber neuropathy by skin biopsy. I'm now also presenting with multiple related autoimmunity and hypogammaglobulinemia. It is possible for some nerve damage to repair depending on the cause. The autoimmune from of sfn can be treated with immune boosters and supressants along with disease appropriate immune treatments. Like synthroid for hashimoto. Will any of these things cure an autoimmune disease -- not yet, but it can be controlled with varying degrees of success. Northwestern university is doing trails on stem cell transplants for some autoimmune disease and I know of one person who four years out seems to have been cured of schleroderma. I don't know whether nerve damage caused by a viral insult can be repaired or not. Viral is different cause then autoimmune. Anyone know?

The testers should be aware that can happen, you can ask them. Your in controlled environment and once the table is down you usually stablize, they know what to do if that doesn't work. You can ask them that too, what do you do if my heart should stop. Many docs stop right before syncope, so it doesn't happen.

Some one is driving you right? If you can recline in the car and put your feet up on the dash that helps me. Also wear shoes with cushioned bottoms. I only wore socks and it was painful. I'd also where shorts or cropped pants so they can see what color your legs turn. Make sure that they have you layed down long enough that you get to your resting heart rate and blood pressure before they start the test. No talking either as that can elevated bp/hr as well. Quiet meditative before start. I didn't faint until the nitro under the tongue during the second phase. My inital bp/hr where really high and keep going up the longer I stood. When the syncope acually happened I dropped like a rock fast and was actual still standing when my bp/hr were unmeasureable watching them. I then felt all my presyncope symptoms and said it is happening this is what happens in real life, please put me down and then I guess I fainted and almost went into asystoli. At first I didn't think I fainted because I came around as soon as the table went down, but it said pass out on the test and the doc said I did. I was at about 30 minutes when the faint happened. It ain't a fun test but necessary to have it done by someone who knows what they are doing. Good luck.

wow, how you did and are doing this w/pregnacy and a brand new baby, wow! You and Jen sound like you both hit the deck quick. I count my lucky stars that my sfn/autonomic is still compensating with the postural rise in norepi causing the hypertension, as I'm still standing for the most part. I've learned to avoid the triggers that bring on the near syncopes. When my bp drops like that though I am so acutely ill, cold clamy sweats, nausea, ears plug, everything turns yellow so I can't see, them my legs turn to noodles and I melt into the ground like the wicked witch of the west and can't get back up until it passes. The scary thing about it is on TTT I almost went into asystoli, so it is scary that it could have also happened during one of those episodes. It's awful but infrequent, I can't imagine that happening every time you stand. I'm so happy for you and hope they get to the bottom of it sooner rather then later, you've already been waiting a long time. Take care girl!

I took a look at his bio pretty good training and hospitals. Interesting that he specializes in neuromuscular disease. That is what my neuro's practice specializes in and I wonder if he part of the small group of neuromuscular docs that talk to each other that my neuro participates with. These docs are focused on looking for cause and know to test for some of the more unknown causes. My neuro initial tested me for things like stiff persons, amyloid and looked at the anti hu and tests like that. He also saw the big picture with me and knew my neuropathy was autoimmune based, even if we couldn't figure out what it was yet. I finally presented with hypogammaglobulinemia and now have been found to have autoimmune hashimoto thyroid, autoimmune lichen planus which are often found as companions with hypogamma. He and my rheumy have also diagnosed what is being called UCTD undefined connective tissue disease because I haven't fully presented with lupus or sjogrens though I have positive markers pointing to them. So I'm really excited for you and if you test positive for anything you will have more treatment options available to you, other then just pots symptom treatment. Question are you not able to be upright at all? Are you able to use your muscles? I was wondering why the type of transport you require.

Have they talked to you about a pheo, yet? I think they have to do imaging to find one. My dopamine was said the same thing, I'm not sure that it means anything. Your norepi is off the charts though mine was went from 400 to 1300 so above 8000 is not normal and needs to be investigated further. Google symptoms of pheo's and see if any of the symptoms fit you. Good news is if you have one of these and they can find it, they take it out and it stops the abnormal functioning.

Both my diastolic and systolic swing with posture and conversation. A believe my pots symptoms are from small fiber neuropathy and a compensating increase in norepi on standing. I also have documented multiple autoimmunity and immune deficiency underlying the symptoms of pots.

Mine's kinda of just pinchy and doesn't last long.

When I was researching EDS after my colon rupture, I'm pretty sure I read that pale translucent skin with visual veins and arteries was common in one form of EDS. Are you hypermobile or have stretchy skin?

There are different types of neurologists, my neuro specializes in autoimmune neuromuscular disease. He does qsart and skin biopsy for SFN.

Mine is in the low 50`s, but has been recorded down to the high 40's.

I always thought I was effected by barometric pressure. I'm more symptomatic during arizona's monsoon season. However, it was confirmed when we had one of those energy audit companies come in check our house. The seal the house to do their measurements, put this contraption over the front door and then measure pressures around your airducts and doors. When they lowered the pressure I got so nausiated and had to lay down until they were done. It was awful!! I also am more symtomatic before my period to. It is very common to flare during that time.

Hi, Jen, Big Hug! I know how exhausting this can be. Been there last time I gave up, my colon ruptured and my surgeon required me to find out what was wrong before he did an elective resection on me, I thank god for him. Have you had or have they offered you plasmapheresis yet? I had that first and improved and I was with a lady that had polyneuropathy who also couldn't do ivig and she had been on pheresis for 20 years and it has kept her going. It is my back up plan, if things get worse for me. Mayo or your particular neuro isn't the last word, there are other doctors that might help you. There are many non mayo doctors that don't always think mayo gets it right. Though when they are good they excel. I know another doctor seems daunting. You need fresh eyes on you. Your neuro may have realized he made a medical mistake with you and is worried that you might file a complaint, which means he can't help you any more. I know that my neuro here in phoenix runs a lot of rare disease tests and he communicates with other neuro's that do what he specializes in. Perhaps you can call their office and find out if one of those docs is close to you. You could also try and come here for testing. They treat MS, AlS, stiff persons syndrome, aggressive neuropathies just to name a few. IVIG is one of their treatments, but they have many different types of treatments and even do clinical trials for ALS and MS. Take a look at their website at Phoenix Neurological Associates. Read their info and then google the diseases they treat and see if any of them fit you. Also Northwestern in chicago is doing stem cell work with patients with autoimmune disease. My nurse's wife had schleroderma and she had stem cell replacement (an ordeal) but, it seems to have cured it and after 3 years it had not returned. I'll have to check in at the hospital and see if she is still doing well. She is a nurse too. Also Mayo has a patient liason's department that you can contact about your care and they will help you facilitate your care with them when you are having a problem. Which I think you are. I'm here for you, you just pm anytime. I will help if I can and I'm really sorry things didn't go well for you this last round. It can get better, I am witness to that, don't give up or in. If the time comes and there is nothing left that can be done (which you are far from), then there can be peace in accepting. Your not there yet. We aren't ready for you to give up yet. Talking about your problem and bringing it to god and asking for help is not complaining. But, you are right that you are not your illness and can decide to not let it rob you of your joy. Finding the blessing in hardship can really lift us up and bring joy. There is I think always a silver lining somewhere to be found. xo big hugs!

Hi Rich, Have you been tested for and or treated for a primary immune defeciency? You mention infections and low igg. Take a look at hypogammaglobulinemia or common variable immune defciency. I rarely run a high fever, low grade if at all, even with a colon rupture. The pid are known for having infections fo the upper respiratory area, though you can present like I did. I had chronic tonsilitis, swollen glands, female and gi infections. What was your IGG and was the test a Total quantitative immunoglobulin? There are lots of disease specific ig tests, that won't show your global response. If you have low igg, did they do a vaccine challenge test on you and/or check your sub IG panel, IGd and E? As far as antibiotics. I have not done well with orals. I now get rocephine shots when my WBC elevates and I feel like I'm fighting something. I have had 2 in the last week or so and then we check my cbc. It is easier then getting oral antibiotics and is not so hard on the GI tract. I also get elevations in my CRP. From my experience I had a hard time with cipro/levaquins, they do clear infection, but if you suspect you have any kind of neuropathy they make that worse, I was in terrible body pain while on them. I don't know much about sfn and the lungs, but since those nerves are associated with all autonomic function, it might be possible that those nerves in your lungs are being effected. Have your doctors discussed treating you with immunoglobulin replacement with your history of infections and low IGG?

This just happened to me to. They shifted the cost of my Ivig med to the pharmacy cost center from the medical cost center. There are no caps for out of pocket on pharmacy. So they are shifting the cost back to the patient, by doing this. I'm not sure yet what recourse there is. It may cost me and extra $200 a month and it won't apply to my total out of pocket for the year, so I will have to continue to pay regardless of having met the cap for the year. Any ideas on what are rights are and if the insurance companies can do this? This is just starting to happen and may effect other forum members.

mine is in the low 50-60's

Hi julie, yes it is good to get one, I just seem to be adding diagnosises though. Which isn't great. Every time I think we've got it figured out something new comes out of left field. My cardio is like "you should be surprised by that, I think that this is just going to be the way it is for you. I think they are going to find that all these autoimmune conditions are on a related continum and they all are connected and one will trigger another. That the study of these immune defects is really a young one and we may see stem cell treatments curing many of them." So that was interesting. I'm getting to the point were I almost have to laugh about it, it has become so ridiculous. Which is why the big sigh!!! I read your dealing with ra that is is a tough one, probably harder to deal with then what I am. Interesting your take on hashi. Why do you think the symptoms are related? I've been reading up on it and it's more of a hypo state with your heart rate dropping, so now I wonder if my recent heart rate drop is because of hasi not improvements from the ivig I take for the immune def and autonomic neuropathy. Then I read that synthyroid can raise your blood pressure. Mine is already high when I'm upright, so I hope that doesn't happen. Actually I don't go to goodman, thought about it, but he seems to treat symptoms more then getting to the route cause. I've already been on that treatment plan when I went to vanderbilt. Salt loading didn't do much for me, though I am eating more pink salt as my blood sodium has been low. I see a neuro who treats in a subspecialty that focuses on neuromuscular autoimmune disease like ms, stiff persons, polyneuropathies, large and small fiber neuropathies and because of the nature of these disease states he sees a lot of immune def conditions. They happen sometimes to do supressive treatments associated with the autoimmunity, but, sometimes it was there to begin with and is part of the whole defect. Like mine was! I go to Phoenix neurological associates and see Dr. Todd Levine. It is one of the few practices in the west/southwest that treats in this subspecialty. So I feel fortunate I was referred to them. Thanks for posting, I think I just needed to talk it through with other members here on the forum. That does help us feel a bit better and like we are not all alone in it.

Oh I meant to say rheumy not neuro. It was the rheumy that did that the tpo/ab test. The 2nd rheumy said that the tpo/ab can sometimes cause the ana to be positive. That still doesn't explain the positive ssa and sm/rnp. That first rheumy didn't even bother to tell me my tpo/ab was positive, I had to figure out what it was myself. Then I realized I needed to see my endo and it took a bit to get in with her. As soon as she saw it, she said it was hasimoto. Once it's positive it's positive and thyroid medicine may help to bring my cholesterol down, which is also a symptom of hasimoto. So she is treating it even though my tsh is normal. Yea, I'm perturbed it took so long, but once I saw her, she got it right. The thing is I don't know if and when she would have run that test herself, so maybe it was a good thing the rheumy did it, even though he wasn't helpful. I just wonder how long this has been going on and missed because my tsh was normal.

Hi guys, you know I've been trying to pin down that autoimmune flare that started this summer with a scalp biopsy that showed scarring alopecia lupus. A frustrating process once again. Two rheumy's later and the second one who is from mayo rochester and joined an integrated practice here in arizona, said undefined mixed connective tissue disease. I least she thinks I needed to be followed, and has agreed not to interfer with the treatment plan my neuro has me on. Anyway the first neuro did the tpo/ab test and other lupus/sjogrens tests and tried to tell me I didn't need a rheumy even though my tpo/ab, ana and ssa were still positive, my sm/rnp was negative on second testing. I hired a case manager nurse advocate because this has all been overwhelming and she didn't agree with the accessment and suggested the other rheumy. So, I saw my endo of two years, who is basic endo, but is treatment not testing oriented; and after years of continuing to have a normal tsh and normal thyroid nodule biopsies she says I have Hashimoto's an autoimmune thyroid disorder. I have started on the lowest dose of generic synthroid and my face and neck already feel less puffy. I can't help but wonder how long the attacks have been going on and if this has also been underlying the dysautonomia symptoms I'd been having for years. That being said at least it is fairly easy to treat, which is nice for a change. I guess it also confirms that I do have some kind of complex autoimmune dysfunction, probably causing the small fiber autonomic neuropathy and lupus like symptoms. So between the cvid immune def and the autoimmunity I guess you could say I have a messed up immune system. She also said it may be what is causing my elevated cholesterol and hopes treating it will bring that down too! So I'm on glumetza for the hyperinsulinemia, synthorid for the hasimoto's, labetalol for the bp/hr issues, and ivig for the immune def and small fiber neuropathy. So, I've come to appreciate my neuro's ability to see the big picture with me and getting me on ivig was the right thing, it however doesn't guarntee that there won't be an autoimmune flare or that I won't need disease specific additonal treatment. Sigh! Just when I think we've got thing figured out, here I am over in left field again with something new. I'm glad we are treating things it still can be a bit tiring dealing with all these things, all these doctors and treatments. If anyone has any advice on the latest, please post away, I guess even this little warrior, could use some words of advice and comfort, and gets tired by it all. Thanks guys, hope my story helps you!

hey Ruby, glad it went well. I looked at the Ivig chart and it looks like that one has no sugar, sodium and very low iga. All really good as those things in the products are the ones that may cause reactions. You can keep taking tylenol for a few days. I've been taking that and the benedryl and zantac for a few days after to try to keep the headache down. I'm still getting one a day or two after but they have been milder and I'm getting rid of them faster now. Also hydrate hydrate for a few days after too, not just before. I wouldnt drink cafeine type products during as they are diuretics and get rid of fluid, opposite of what you want. Hope you start getting better and treatment makes a difference for you. It is good they went really slow. My BP is usually higher after infusion too. It adds stress to the kidneys which cause a spike in bp. Though I am one of those that goest higher on standing. It is much better then it was with the swings being closer together and my heart rate staying under a 100, but My resting heart rate also starts in the low 50's, which is why they didn't realize that I'd had a 30 point increase in the 80-90 range and that I was still going into the 120's at it's worst. JenGlen, don't know if you read my reply to your post on rejection, but you posted which immunoglobulins were low in you, it looked like it was a primary immune def called "selective IGA" if you have that ivig can be very dicey and if there was any iga in the ivig infusion they gave you, it would explain your reaction and rejection. I also think that they are having you wait 10 weeks to retest your labs, as that is how long it takes to completely clear IVIG out of the body for tests not to be squewed by the ivig, not necessarily because you are continuing to reject it, they already know that occured. I sure hope that it didn't cause any long term damage to you. I was so worried about you starting it when you were in the hospital, because I could tell that you didn't have enough info to make an educated choice. It would still be good to know what ivig product you were on, as there are several that start with gamma. I still am furious at that mayo neuro for insisting you continue and/or not knowing the results of your immunoglobulin test before starting you on this. Hopefully your local guy educated him on his error, before shutting down your treatment. Ivig when handled right can be a good tool for treatment, but it has to be given under strick guide lines and it is not for every immune def disease. I'm keeping you in my prayers and pray a solution comes that will get you more functional with that big family of yours. I wasn't able to have children, so I always feel like they are a blessing and a gift. Hopefully your health issue will teach them understanding, kindness and compassion. I'm sure they know you love them, even when you stuggle to care for them. We had foster kids in our home growing up and it made me aware of the world outside of myself and that things are not always easy. It was a good experience.