rockenmamaof5

Didn't get warm, but during my qsart, I felt such intense pain I was screaming and crying (I'm a wimp, what can we say)... The doctor overseeing mine laughed and pointed to my tattooed arms, and said "you say this hurts, and you have two tattoos, how did you survive those?" i swear, I don't remember my tats hurting as much as this test did, but as a friend pointed out, "you're a lot more sensitive to things now than back then, you can't even shower without crying now because the water feels like glass."

I wasn't screaming and crying outloud (inside I was at least for the first few minutes) then it all went away. Weird. I go from one extreme to the other and it *****! I just wish my body would make up it's mind.

And yes it feels good Katybug! I'm just so over all of this. I was a former Ultra runner ( longest race I ran was 100 miles) and training for all that was NOTHING for compared to dealing with all this. Thankfully my body is crying uncle and things are finally showing up in tests so within the next few weeks pretty much what's going on with me. It's not going to be good, but at least I'll know and we can get a plan started. That's all I can ask for

Thankfully I was able to lay down the whole time. ALL this was soooooooo much easier to deal with than my tilt table test and I didn't even stop my medicine for that which they had me do for these tests. I'm wondering for those who went through the testing, Did anyone else get extremely warm the last 4-5 seconds of blowing out during the valsalva? My back got warm and my leg got warm in fact I even said OMG I think I might have pee'd myself (got a cath in and have cath bladder strapped to bag) but then the the next time I had to blow my whole body just heated up. It stopped once I was able to stop blowing and relax but ****! And the QSART. I was feeling the electrical charge before the lady thought she was starting the test. I had no idea that I would be feeling any type of pain. I joked that had I known I was going to be "electrocuted that maybe she should move the stuff to my head lol. Thankfully the pain stopped after a minute or so. And I found out afterwards that the Neuro who ordered this (mine just had a baby) just started vacation. LOVELY

I feel like I actually be close to to maybe not having a complete diagnosis/s (since it seems complex) but at least close enough that we can get a better treatment plan. I had my appendix taken out a few weeks ago, despite going in for weakness, testing positive for rectal bleeding but in turn they found inflamed appendix during cat scan (still haven't dealt with lower gi bleed). Spent week in hospital , released day before neurologist appointment. Major decline from the close to 2 hour drive each way to neuro's. Ended up spending a week at the local hospital and getting a round of IGG and being realeased just in time for yet another appointment at Neuro just to get admitted at the hospital there since I wasn't responding to the IGG yet. Ended up loosing function of bladder while at hospital.. Tested Positive for SSA and I already am positive for small fiber neuropathy which when I was diagnosed with it 2 years ago was told it was probably idopathic and would probably just cause sensory issue's in hands and feet. WRONGGGGGGGGGGGGGGGGGG major issue's in legs and whole body and everything else. I go for autonomic testing soon . Doc thinks it's an auto immune causing the small neuropathy which in turn is causing the dysautonomia .

Anyone here deal with loss of bladder function (bladder totally holds onto urine and loss of feeling the need to urinate). And if so did it ever come back??

Thanks in advance

Thank you so much for your response rockenmamaof5. I'm so glad you have benefited at least to a degree from receiving IVIG. How were you able to get it approved ? I do know of a number of people who have received IVIG off label for various diagnoses other than the approved ones and have benefited greatly from it. One has lupus.

Trying to get clear diagnoses can be such a long frustrating journey. I have been down and continue down that road as more abnormalities keep turning up.

I'm sorry things are bad for you right now. I pray this 4th dose helps a lot !

Thanks for the support. I really hope for an opportunity to try IVIG but we'll see.

Hugs back,

Janet

I have a presumptive diagnosis of Myasthenia Gravis at the moment that keeps it approved. Now the tricky thing is getting it done. My neurologist at a big hospital almost 2 hours away will do it, but the neurologist where I live will not do it. They want a clear cut diagnosis. Right now my PCP is trying to get ahold of my neurologists to try and get it set up here since he's willing to do it. Too many people worry about CYA and not about the patients. Unfortunately there isn't always a clear cut answer when too much mud is in the water so to speak. Like you it seems more abnormalties keep popping up. I am TIRED of hearing atypical this etc etc. We're hoping the muscle biopsy I'm getting done will hold some answers and I am also getting a Single nerve fiber emg to hopefully clinch the MG diagnosis or who knows what. How long do we have to suffer or how much do we have to suffer before they stop worrying about CYA. There are times when the befefits outweigh the risks. I don't think it should be up to the insurance companies to decide that and if you have a good doctor, they will be more worried about you than their own a$$

Good luck!

I've had 3 ivig's this year and am getting ready for my 4th. For me it has helped get me out of a "vegative" state so to speak and keep me from it so the risks are more than worth it to me. I still don't have a clear diagnosis (or 's) since it may be multiple things but since my body has some response (it's no miracle cure for me) to the IVIG it's the go to thing when things get bad, like now.

I'm sorry you have to deal with insurance crap. Last thing we need to deal with when trying to get healthy! Hope this avenue works for you! If not I pray you find one that does!

Hugs

Well I had an appointment with my PoTS Neuro a few weeks back and in addition to many other things discussed was very surprised when the subject of having IVIG therapy was brought up. You can see from my signature what my various diagnoses are. I wonder have any of you with diagnoses like mine had IVIG and have you realized any benefit from it ? For me having it done locally ( home health agency ) would require that my Hematologist ( who I see in three weeks ) be agreeable to signing orders written by my Neurologist because I live in CA and my Neuro is in AZ. I have much to think about. As you all know this is a costly procedure and not without risk and sometimes without any benefit.

Thank you for your responses,

Janet

yep dealing with blurry vision myself. Today I woke up not being able to focus. Having a bad day and waiting to hear back from doctor about getting another IVIG. My MG causes double vision but the blurry vision also seems to be caused my weakness (at least for me)

Yeah, Id go in right away. Anytime you have this kind of bleeding whether or not you had an ablation, its worth checking out. Sometimes endometrial cells can survive an ablation and grow again. Cysts are common "leakers" of blood. That seems to make more sense to me. US are good but they don't always give the best picture.

I went in on Thursday, had a biopsy done, got put on progesterone and go in next Wed for a SIS ultra sound. So far day 3 on progesterone and bleeding has not slowed down a bit. If it doesn't I may have to call because I'm not feeling to great as it is

It may not be dysautonomia related. I had a problem with this (non-stop bleeding) for awhile, it turned out to be due to huge ovarian cysts causing it, in my case. The cysts didn't cause any pain. I went on bcps for awhile and it seemed to resolve the problem.

I am not aware of dysautonomia causing irregular bleeding. Many of us do feel worse at certain times in our cycle, and anemia does typically make POTS symptoms more severe.

I've dealt with the ovarian cyst before and the bleeding and did the same thing you did with the BCP. Things have just been weird ever since my first hospital stay this year. Like I mentioned the only reason I was thinking the whole autonomic thing is when I "over do it" per sey my symptoms tend to get worse and the bleeding goes right along the same pattern that all the rest does. I don't have POTS I may have primary or secondary dysautonomia. Anyways I've got to get myself back into the GYN anyways something is definitely up.

Thanks Momto!

I don't know if this is an answer for you but I will give you what I have.

I used to be a long distance runner and into weights. I had kids and then became a yoga instructor. I had always been regular. Somewhere along the line when my POTS symptoms had become terrible, I began to bleed more often until it became all day every day. They I became rail thin and stuck in bed. I was "young" so to speak so it was hard to convince anyone that I had a real problem. Medications made me swell and get hives. My only option was to ablate my uterus and look of endometriosis. When they went in they found endometriosis lining bits and parts of my abdomen. I was happy to have my uterus ablated! I was done having kids so this was a no brainer for me. It took care of things before I needed to have any hormone creating structures removed etc... this just got rid of the bleeding an anemia but not the POTS per se...though I did feel better having my blood stay in my body.

If you strain and bleed...then this might be worth perusing as indicated in my personal experience.

Thanks for the info Sunshinegirl. I had an ablasion close to 10 years ago. I did just have an US of my abdomen but maybe I need to make a GYN appointment

does anyone else Dysautonomia effect their cycle? I bleed every single day. Not much but it's every day. I attribute it to the dysautonima because anytime my body is feeling extra week, I bleed more (like right after or not long after doing something that my body feels is strenuous.

Thanks in advance!

Pam

I use the Polar FT7 sports watch. I like it because I can see my heart rate all the time if I want and use it as biofeedback.

I also get winded and tuckered out just from getting dressed. I cannot for the life of me get the compression stockings on without having to lay in bed for half the day! My HR goes too high...that's the problem. Try explaining that to a neurologist!

Rockenmamaof5 have you had a cardio workup?

pink1975 I also get my stamina back from a sedative. I have come to believe that it lowers my heart rate and makes me feel better but does not make me tired per se.

I use a Garmin for my HR. LOVE it!

I've had a full workup. 2 stress tests during last hospital say, one treadmill the other chemically induced since the first one was abnormal and it got stopped early between the blood pressure 172/106 and how I was feeling. Also had an echo during the stay and then the Cardiologist told me after my Tilt Table Test last Friday that my heart and cardiovascular system are great. So I failed the test despite the Cardiologist thinking I was going to pass it and only doing the test because my Primary doctor requested it. He told me to make an appointment in 2-4 weeks for a follow up. I don't think I'll be doing that.

Gotta "love" getting all sweaty and wheezy from just getting dressed I'm not asthmatic but doing anything is starting to get me wheezing. Anyone else?

I've got some replies to others here but too exhausted and I have to drive to DD's Softball game in a few. Hope I'm recovered from my getting dressed and little bag of snack packed before I have to leave in 30 or so minutes.

THIS *****! Course you all know it, just needed to get it out of my system for the moment

MTA: can't believe I was a ultra runner and weight lifter just a few short years ago. My body still looks the part but it's not even close to living the part

Have your docs been able to identify any antibodies?

I was borderline positive (according to the results sent back from Mayo I'm positive) for Modulating AchR antibodies

Hi Pam,

There are several forms of EDS. There are genetic tests for 2 of the 3 common forms, classic and vascular. The vascular genetic test is more accurate than the classical and you can still have classical without the test showing that specific gene mutation. The Hypermobile type is a clinical diagnosis as they have not isolated the gene/s that cause it. The other types are very rare and mostly diagnosed during infancy. There can also be crossover between the 3 common types. If you suspect EDS, I strongly suggest you take a look at the www.ednf.org website. It gives lists of symptoms for each type and how each type is diagnosed. Their forum is also very good at giving doctors suggestions for diagnosis (Unless you're near Baltimore, then I can give you names.)

Thanks Katy! I highly suspect this as t have a lot of the symptoms. I had suspected for awhile that I may have a connective tissue disease and my Doctor was the one to encourage going to see a Rheumatologist. My PCP and Neurologist are getting things together to send to John Hopkins as they would like me to be seen there. I see my Neurologist in a few weeks and even if it's not her specialty, will mention the EDS. There is a strong family history of hypermobile joints as well as dislocations among other things.If anything she may put it in my file as a possibility and something to look into when I'm at JH.

Thanks again!

Pam

Sorry to hear it didn't work! I totally understand about not wanting your son to have to be on narcotics long term! I hope it helps him!

Hi there! I, too, am diagnosed with severe daytime hypersomnia as I didn't go into REM during the daytime sleep study. But I do have enough off the symptoms that the docs were surprised that I didn't have it. I experience mild cataplexy when I am tired during the day(I say mild because I've never actually fallen down but I usually don't wait long enough to find out if I will eventually fall). I also become ice cold and the only thing that will allow me to warm up is sleeping for a few hours.

Also, narcolepsy and daytime hypersomnia seem to be more common (from my observation, no science here as far as I know) in the Ehlers Danlos community. I don't know anyone in my "normal" life with narcolepsy or hypersomnia but there are quite a few narcoleptics, etc. on the EDS forum I belong to. I was shocked to actually see all the responses to posts on this subject. Is it possible that Mason should be evaluated for EDS? Here is a website that gives good information on EDS. They also have a Forum that you may want to search for info on narcolepsy. http://www.ednf.org/

It's "funny" that you mentioned that, I was going to ask you about EDC. I have very hypermobile joints and at one point when I took my daughter to a rheumatologists when she was very young and having problems with joint pain they mentioned EDC because she had several physical signs (so do I) like small jaw high palate and hypermobile joints. What type of testing is there for this? I only ask because I have other stuff that's been going on and had also gone the rheumatologist route (claw toes, lots of stuff going on in my hands as well) and they did a ana test done and a myositis/Jo1ab test done and all were negative.

Thanks,

Pam

Also, I know no one wants to hear about rest, but I find that not resting enough for my body's needs, based on my illness, has a cumulative effect. What I mean by this is, I might be able to push myself to do more than I really should 2 or 3 days in a row, but I pay for it every time. By the end of day 3, I am usually in trouble...close to fainting, severe migraine, worsened brain fog, GI issues, etc., etc.. And as much as I struggle with parking myself on the couch and doing nothing, I have to do it if I'm going to maintain a baseline where I can have 2-3 functional hours every day. I can steal 5 hours for Monday, and 6 hours for Tuesday, but that basically means I used up any functional hours that might have been available for Wednesday.I

You are right on the money with this! I am trying to allow myself 2 active times. Once in the morning and once in the early evening. Those active times include appointments, exercise, watch my daughter play softball and housework. I'm finally feeling decent enough in the afternoon that I'm hoping that my body is up for that. I hate that I spend most of the day parked on the couch but until I get more stablized it is what it is.

I think I saw the article you were talking about Katybug! I don't deal with fatigue so much as I deal with weakness. Doesn't take much and my muscle's are like jello, my breathing is horrible and I feel like crap. I have no choice but to listen to my body if I don't want to end up back in the hospital.

Interesting documentary and article, http://healthimpactnews.com/2015/tv2-denmark-documentary-on-hpv-vaccine-shows-lives-of-young-women-ruined/.

Another reminder about doing your due diligence when it comes to checking things out. My daughter hasn't gotten it yet and supposedly there is a better vaccine coming out. I'm glad we waited and plan on waiting a little longer than planned.

My son, Mason has been dealing with Dysautonomia now for almost 6 years with virtually no progress made since his diagnosis. He was Diagnosed at the age of 10 with Dysautonomia POTS and has been on every drug therapy and protocol since, with no positive results along the way.

We recently moved across the country and started all over again with a new team of Doctors. New treatments, new rounds of testing along the way with no real changes in his condition. One of the Dr's recommended a sleep study. So reluctantly we agreed, other than insomnia we didn't really see what a sleep study would do.

It turns out Mason is now diagnosed with a severe case of Narcolepsy. This came as a total surprise to us. Mason never takes naps, is up half the night in many cases and doesn't exhibit what I thought were the symptoms of Narcolepsy...ie falling asleep all the time. He never complains of sleepiness, to me he exhibits more insomnia symptoms.

However, from what we are learning, many of the symptoms he has show for years; brain fog, fatigue, muscle weakness; dizziness, loss of vision, low BPI , etc. etc are also symptoms of Narcolepsy. Very similar symptoms to Dysautonomia.

Just wondering if anyone else out there is diagnosed with Narcolepsy. We are wondering if we have been mis-diagnosed all along and fighting the wrong battle or if this is just another thing on top of Dysautonomia.

The recommend treatment protocol is Provigil in the AM and Xyrem at night, but before we go off on another approach we are trying to learn as much as possible.

I haven't been diagnosed with it "yet" though my Sleep neurologist says I maybe in the future. The one thing that my body didn't do was go into REM during my day time sleep study which is the only thing that is keeping me from the diagnosis. For now it's just hypersomnia. Anyway I'm sorry your son is going through all of this. Just an FYI you might want to ask about if Nuvigil is something your son could take. It's the second version of Provigil. I had to try the Provigil first and it didn't do much for me at all. Well It might have if my insurance company would approve 2 tablets instead of one. Also I think the side effects are worse with it. Just thought I'd mention it. Hope this helps your son!

Pam

Hi there! I don't have this issue but due to other concerns, I was tested for the various myosites. Has some for of myosites been ruled out? (Polymyositis, dematomyositis, etc.?)

Yes I have been multiple times.

Thanks Katybug

I've been taking Mestinon for years now for orthostatic issues--it has made a huge difference in my case. I have noticed some side effects (nose runs almost constantly and my eyes tear easily) but I can live with that small inconvenience. I still have much more trouble functioning in extreme heat or cold, but I've gradually gotten so much of life back. I tried weaning off of the Mestinon a couple summers ago to see if I still needed it…I did! It was not a pretty situation and took a little while to get back on a more even keel.

If it's helping keep taking it! Glad it's helping!

Pam,

Heat is the worst for me. I cant tolerate it at all.. I really am fortunate that we have all 4 seasons here in NY! Has the mestinon been a big help to you with keeping your blood pressure regulated?

You're not too far from me (PA) This will be my first summer with things full blown. I've had issue's for years but not like things are now.

I'd have to say Mestinon is definetly helping! Things got so bad I thought my body was going to explode just a few short weeks ago. The day I was hospitalized my Neuro added another 60MG each day. I spent almost a week in the hospital. Had 2 stress tests (tried to do treadmill one but blood pressure was a huge problem so they stopped it and I ended up having a chemical one done) Anyway now my head, chest and stomach don't feel like they are going to explode so not only is it helping my blood pressure it's helping the gastroparesis. During the tilt table test I was still very symptomatic but I didn't pass out. So it's keeping my blood pressure from dropping too much but it's no cure.

I am so extremely tired now. I was at my Grandma's all week. Today I had to pack which didnt take long then I made a quick lunch. Then at 12:45ish my parents came and we drove around to see if any yardsales were still out. Then we stopped at a grocery store just to pick up fried chicken for dinner. Then we got home around 1:45ish and I had to unpack my backs which took me until 2:55 and then I had to feed my dogs. Just doing that and I am super tired. Im not anemic but I am so tired of getting tired easily. Any tips on how to get energy back after being out. I hate how tired I get. It is frustrating.

you are not alone! And I as well would love to hear any tips from people about anything (besides resting) that will help improve energy level. I feel your frustration artluvr09!

Hi Pam, welcome to DINET! I'm on mestinon and know of others who have succes with it re hypotension. For me it works on temperature which is such a blessing!

Thanks for the welcome Corina! I'm glad it's helping you with the temperature issue! It helps me a bit but not as much as I'd like. My daughter plays tournament softball and I'd really really like to be able to watch her without having to bring layers of clothes as well as take the chance that I may end up back in the hospital or at best have to deal with being couch bound to recover for days.

Sorry to hear about you having seizures:( I have MAJOR problems with thermoregulation. It's not as bad as it has been but my "thermostat" is still broken. The biggest problem I have is I can't deal with extreme heat OR cold. My body totally freaks out and things get bad.

Thanks for the welcome Sarah!

Hi, Pam! I'm sorry I can't elaborate on the Mestinon unfortunately as it wasn't recommended in my case because it's contraindicated in those with seizures, which is a bummer because I wanted to really try it for the thermoregulation control I've read/heard it helps. Do you have any issues with that at all?

I wanted to welcome you to the forum, Glad that you are here!

Sarah