janiedelite

I surprised that your LTD carrier doesn't contract out to another company to help get you on SSDI. My mom has Cigna and I have Unum for LTD and they each contract out to another company whose sole job is to help you apply for SSDI. Unum uses Allsup. They also supplied an attorney when I had my SSDI hearing. Your LTD carrier must have some sort of support... after all, getting on SSDI will only benefit THEM. They will deduct your SSDI monthly payment from whatever they are currently paying you monthly so it will save them tons of money.

It may benefit you (or someone who can help you) to call your LTD company, explain how severely ill you are, and ask how they can help you with the SSDI application process. If they don't have any resources, ask if you can hire an attorney on your own to help you get SSDI. The attorney will be paid most likely by collecting a portion of the back-pay that you will get paid (once you're approved for SSDI, they'll pay you for all of the months since you first applied).

And to answer your final question, yes you can certainly get approved. I'm only 38 but was approved a couple of years ago for SSDI. I was turned down the first two applications (mostly because the company my LTD firm used to help me didn't provide all of my medical documentation). But I was well-prepared for the hearing and the judge had no doubt that I qualified. If you can provide plenty of medical documentation (testing, letters from doctors about how disabled you are, etc), you could be approved the very first time you apply but don't be surprised if you have to apply again.

Yes, a CBC/complete blood count should show your hematocrit and hemoglobin levels

I've weaned off of my POTS meds occasionally and found that my response to them sometimes varies. Sometimes I can tolerate midodrine in small doses, sometimes I can't tolerate any. Of course, whenever you decide to wean off meds it should be done after talking with the doctor who prescribed them for you.

Medications often do cure illness. If my mom, who has carcinoid syndrome, wasn't taking octreotide for the last 7 years, she would surely be dead now due to the toxic levels of neuroendocrine hormones/catecholamines/etc that her tumors release. Prior to the advent of octreotide, the main cause of death for carcinoid syndrome patients was heart failure because the substances released by the tumors passed through the liver into the right side of the heart and damaged the tricuspid valve. There has even been research recently documenting that 5-10% of carcinoid patients experience tumor shrinkage while on octreotide and, thank God, she is in that small group of patients who experience tumor shrinkage while on high doses of octreotide. She has had this illness for over 30 years, so we know her recent progress is only due to her octreotide. There are many illness that can be cured with medications such as many types of infections, other types of cancers, etc. We have to be careful when we make blanket statements such as "Medications can't cure an illness. Only nutrients can do that by addressing our body's needs. Meds are symptom management tools."

I take 1 gallon of water, add 6-8 teaspoons of pink himalayan sea salt, 4 EmergenC packets, and one packet of Crystal Light. My cardiologist suggested the pink himalayan sea salt and EmergenC because they supplement the drink with minerals you won't get from table salt. Once gallons lasts me for 3-4 days.

Potsgirl and anyone else, we are always looking for good writers for the newsletter!

When I was tested for small fiber neuropathy at Mayo, they tested my sensation of vibration, cold and hot. They also did a biopsy to see if I had any demyelination of the small nerve fibers. The only area I tested abnormally in was my sensation of heat. Any slightly warm item on my skin feels much hotter than it actually is. So I was diagnosed with small fiber neuropathy.

One dermatologist diagnosed me with both raynaud's and erythromelalgia (burning, red, painful feet). I do notice that if my feet are slightly cold, they become dark, dusky and cold. If they are slightly warm, they are red and have a painful burning. The Mayo doctor said I had vasomotor neuropathy (the nerves that control dilation/constriction of blood vessels don't work like they used to).

What helps: gabapentin (I'm not currently taking this but it did help), rest, staying cool, elevating my legs, and generally keeping my other POTS symptoms in check as much as possible with fluids, rest, compression, and avoidance of stress.

I got diagnosed with Raynaud's after I had a skin biopsy that showed perniosis, and after the doctors witnessed my cold, purple toes.

I've wondered the same thing because the past few winters my fingertips become painful, cracked and bleed occasionally as well. I have Raynaud's and flushing, although I don't benefit terribly from antihistamines and do well with carvedilol so I don't believe that I have MCAD. I do think it is a circulatory issue, though.

The past 2 winters I've been on gabapentin, which worsened my dry skin. I weaned off of it this year and have only had one area on a thumb that's cracked and bled. I do also notice that I get more of these cracked areas after a period of stress, as well as during the winter months.

Mine was negative a few years ago.

Oh yeah, love it!

Hopefully there will be another newsletter soon. We are in the process of finding a new Newsletter Designer. All of our wonderful support staff on DINET are volunteers, and it is hard work trying to find a replacement for our last newsletter designer (who was exceptionally talented!).

On a side note, feel free to send me a PM if you or any other DINET member is interested in volunteering for DINET! We're always looking for new volunteers.

Thanks

I took clomid for 4 cycles a few years ago when we were seeing a fertility specialist. I felt so great when I first started taking it! I almost felt normal. But I had less benefit with each subsequent cycle, until I didn't notice any difference in my symptoms whether taking clomid or not.

I can't tolerate any progesterone, and neither can my mom. It makes both of us violently nauseated.

I had no idea that this book existed. Dr. Blitshteyn has been an amazing resource for DINET as a Medical Advisor. I'm thrilled that she put together this book which can, hopefully, serve to guide other patients and doctors who deal with dysautonomia.

I think it's always best to have too much information rather than too little. These people don't know anything about you beside what they read on paper. If you can provide clarification by sending more info, then do it.

Can you get the fax number for the local office and send your new records there?

FYI, I never was informed when my case was moved to my local office. When the representative called, they were very understanding and patient.

My mom has carcinoid syndrome and wears a medical bracelet that lists her treating physician and his phone number, her allergies and main diagnoses. She also carries a card in her wallet that lists more specific info, like her medications.

You should be able to get benadryl/diphenhydramine over the counter. It usually comes in 25mg pills.

So sorry to hear of your suddenly worse issues! Has your AS been flaring much lately?

We're fortunate that my folks live a mile down the road and are retired. We talked with them prior to trying to get pregnant and the risk that I could worsen symptomatically and may need regular assistance. My hubby and I also talked about hiring help in case I worsened. However, we haven't been able to get pregnant. We again talked with them and with my hubby's mom prior to fostering and they were incredibly supportive again. We wouldn't have been able to attempt getting pregnant or fostering without this level of support.

Frugalmama, you're so right about the state or adoption agencies being restrictive based on the future parents' health. For example, if I had uncontrolled syncope I doubt we would have been approved to foster or adopt. You have to be able to monitor the child in your care at all times.

Ours is a long story, but we had the joy of being foster parents to several different kiddos. I can't work, so I was the primary caretaker. Our state knew of my diagnoses and my doctor had to write a letter saying what ages of kids I could manage, how many, and any restrictions. We ended up fostering a busy 2 year-old for about 15 months, and we had several infants each for just a couple weeks' time.

Foster parenting was a great choice for us because I was able to really see what I was capable of doing as a parent, and we were able to help these precious kiddos by giving them a loving home.

Parenting with POTS is challenging but possible (depending on your symptoms). There are lots of past threads on this topic where members give tips on how to parent around our dysautonomia symptoms.

We are now in the process of adopting privately, but will probably do more foster parenting in the future (and adopt through foster care if possible).

However, I do think it is best to "hope for the best but prepare for the worst." I have support available through friends and relatives who have made themselves available to help if needed, so I felt comfortable testing my limits by becoming a foster parent.

I've also read that 1 teaspoon of table salt equals just over 2 grams of sodium.

I take in between 6-10 grams of sodium a day. I do check my BP regularly and drink lots of fluids (at least 3 liters). I was not able to tolerate florinef. It made my BP go too high and gave me bad headaches.

I have Raynaud's and rosacea as well. My dermatologist recently started me on a topical doxycycline which helps a lot.

Since developing POTS, I notice that I'm much more willing to let others take the lead in situations, I spend more time listening than talking, and I have to practice focusing on positive and thankful thinking. Sometimes I have no control over what my body decides to do, but often I can head off a bad flare if I can take some time to put myself in a peaceful state. For me, I do this with prayer and offering thanks. While our mental health is not usually the cause of autonomic problems, it can often contribute to their severity.

My cardiologist really likes to use Epogen as a POTS treatment, but your hemoglobin has to be under 10 in order to qualify. She says that most patients she puts on it see great improvement because it boosts your blood volume an has some vasoconstrictive properties.