Clb75

Would you mind posting a list once you have the test done? I thought celltrend was the only one doing these tests. It would be good to know if there are other resources for getting these tests done. Here in the states mayo does some testing but not the ones that celltrend does. Good luck, I hope they find something that helps improve things for you.

Which antibodies are they testing for? The same ones from celltrend?

I’m housebound mainly due to dizziness. I have about 20-30 mins upright before I get dizzy and have to sit back down, and always have to sit in a reclined position. I’ve been using a recumbent bike but haven’t been able to push past the 20-30 min mark. This summer I was able to go to the pool with assistance. I swam around a little and was able to be upright for over an hour as long as I was completely submerged. I could recline on the reclining chairs after to rest. I’ve been able to start walking slowly down the street, only 2blocks And walking really slow. I’m still not past the 20-30 min mark before I get dizzy, but I feel I’ve been able to do more in that time than I did before. Fatigue is an issue, sometimes after walking I have to lie down for 30 mins to recuperate but some days I don’t. I think it’s a very slow process but the more you move the more you’re able to do. Is there anyway you can mix up your current routine? Start walking around the house or down the driveway etc to try to get some upright exercise in? My doc also told me to do planks to work on my core muscles...they are hard but a stronger core may help with abdominal blood pooling.

Has your EP considered talking to your neurologist now that he’s ruled a few things out? Is this related more to the radiculopathy you were diagnosed with rather than dysautonomia? I have nerve pain from CIDP, I know how painful nerve issues can be and hate to see you suffer. Your neurologist might be able to rule out a few things or find the cause. I’m also on ivig, it treats my CIDP but does nothing for my pots. It may or may not help nerve issues or pots, I think it depends more on the cause.

Klonopin causes extreme dependence and can be difficult to wean off. This class of drug loses effectiveness quickly so you have to keep raising the dose to get an effect, which causes dependence. Some people have tried Clonidine for their surges or hyperpots, maybe you could talk to your doctor about that or something similar?

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Please post with an update once you try it. I hope it works out and you see some benefits.

I’m at my ivig infusion right now, so I thought it would be a good time to post. I’ve been on it for 6 years, and have had POTS for 4 years. In my case unfortunately it hasn’t helped my Pots symptoms at all but it has helped the issue it was originally prescribed for. I’m not sure why I’m not responding Pots wise. I’ve heard of other people having success with ivig so it’s always worth a shot if your doc is willing to try it. Ivig can cause lots of side effects as I’m sure you’ve read. For me, I get the headaches, along with bad light sensitivity. The day of the infusion I have to go to bed as soon as I come home. I have a headache, light sensitivity, increased Pots symptoms, weakness, hot flashes etc. The next day I have a headache and light sensitivity to where I need sunglasses and to keep the blinds down but I’m able to get out of bed. I book my infusions on Fridays so I can take the weekend to recover. If I had somewhere important to be the next day I wouldn’t be able to go. I’ve also found drinking water before, during and after is very important. Ivig is like oil going in your veins and the more hydrated you are the better it goes. I’ve never tried Scig but have heard the side effects are less intense. I have also heard though that you can develop hard egg shaped lumps under the skin if too much liquid is infused at one site. It doesn’t absorb right away and can take a few days to go down. I’ve also heard people saying they feel like there is a water balloon under their skin, again because it takes time for it to absorb properly. There is a magazine I like called IG living. You can access it online. It’s got a lot of great information about Ivig and all of the disorders it is used for. Sorry for the long post, I hope some of this is helpful. Good luck with everything.

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I have CIDP and take a baclofen for the muscle tightness in my feet. I’ve been on it for 6 years total, and have had POTS for 4 years. I’ve never had any problems. I’m on a low dose, 10 mg twice a day. Do you know why they said it wasn’t recommended in POTS? There was an initial groggy feeling when I first started it but it went away in time. This was before I had dizziness and lightheadedness from POTS, maybe it makes that worse?

I remember a few months ago another member on here posted about having a pituitary tumor. You could try using the search feature on this site to find the post, maybe there is something there that would be helpful information. Hang in there!

I’m on disability for CIDP and POTS. It’s a complicated process. If you’re still working even with modifications, it may count against you. It sounds like though you wouldn’t be able to sustain a regular job. I agree that you need to look at your work credits first to see if you qualify. I would also get an attorney who specializes in SSDI. The SSA Sets rules about the attorneys, so you don’t need to pay anything up front. They only get paid if they win your case and take a percentage of your back pay. Basically when you win, they give you a lump sum of what’s due to you from the time you first became disabled until you win your case, then give you a monthly payment after. The attorney only gets a one time cut of the backpay. They can be really helpful in navigating the complicated system and timelines. I would also start collecting medical records and get your doctor to complete a functional capacity evaluation. This basically states what things you’re able to do on the job, how long you can sustain it for, how much sitting, standing lifting you can do and how many breaks you need. My lawyer told me that SSA has to go by the opinion of your doctors over their own, so the more info you can supply them the better. Also, Most people get denied the first time and have to appeal and then go onto a hearing with an administrative law judge. In my case I won on appeal so I thankfully didn’t have to go through a hearing. If you win, it may bring some relief financially. I know it’s hard to come to terms and to want to keep working, but if it’s a huge struggle to keep doing so, SSDI can help. Also, Not sure what your insurance situation is, but it takes two years to be eligible for Medicare from the time you apply, it’s not automatic. You can try doing a search on the forum for SSDI. the topic comes up from time to time so you may be able to read about other’s experiences. Good luck with everything.

I tried Lexapro when I first got sick and had an adverse reaction that sent me to the ER. It took me two days to recuperate. I agree with Kim that SSRI’s seems to help some but not others. Unfortunately treatment is so specific to the individual. Hopefully you can find a doctor who can help.

I had a mayo test done for the acetylcholine ganglionic receptor autoantibody. It’s usually found in AAG, but sometimes a small percentage of Pots people can have it. My limited understanding of the Mayo panel is that it tests for autoantibodies like this one and for those that are found in patients who are being treated for cancer, and have developed dysautonomia as a result of treatment. The antibodies being tested are different than the Cell trend test, and not specific to Pots like the Celltrend test is. Dr. Kem (University of Oklahoma), Dr. Raj and another doctor in Texas whose name I forgot have done research on all of the antibodies that the Celltrend test is testing for. They have found these in Pots patients but not in the control patients. Not sure how Celltrend came to be the only commercial lab that is offering this, but I agree that reliability and validity are important issues.

Excessive sweating is called hyperhidrosis. It can be a part of dysautonomia or occur on its own. It’s typically caused by overactive nerves that control the sweat glands. Typically dermatologists are the ones who treat it.

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I have a port and remember a nurse telling me once that if they draw blood too fast, something in the catheter clamps down and then they can’t draw the blood that they need through the port. Have they tried drawing it slower? As for the pain, I don’ t have any ideas. I hope they figure it out soon.

The last time I had to stop it for a few days, my BP started to come back down. I also have NCS, and will faint when it gets too low. It may help you to keep up with fluids and salt. I hope you get to the pharmacy soon.

I clench my teeth too and bit through the last mouth guard I had! I think yours is more severe though compared to what I experience. I don’t really have much to offer in terms of suggestions, I just kind of put up with it. There are different types of materials the guards can be made out of, the one I really like is a hard acrylic but softened when you run it under warm water. It fits your mouth better then hardens up while sleeping. I did better with this than the regular hard acrylic which gave me headaches. I’ve never tried meds for clenching per se, but I’m on baclofen (due to contractures in my feet from neuropathy). In my case it hasn’t really affected the clenching.

I remember having shortness of breath really bad when I first got diagnosed, so much that I had a hard time talking at times. It felt like really shallow breaths, like I couldn’t get enough air on one breath. My doctor at the time said it was because there is a lack of blood flow to the upper parts of the body, including the lungs. In my case this has cleared up with Pots treatment even though a lot of other issues remain.

I have NCS along with Pots and used to faint a lot in the beginning. I agree with you about listening to your body. I learned the hard way this is something you can’t push through, and to take action when I start to feel symptoms coming on. For me the first warning sign is a really nauseous stomach. I try to lie down when I feel this, even if it’s in public. It looks funny but it can help prevent a full episode.

Have you had a test for small fiber neuropathy? I remember from a previous post they ran a nerve conduction test and emg, but these only test for large fiber damage. You can have a negative nerve conduction test but have small fiber damage and have the burning and tingling feeling. They typically do a skin biopsy or a qsart test for small fiber damage.

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