leah1321

I love Kitties! My babies are Cornish Rexes and have ginormous ears. They are missing the upper two layers of fur and only have the curly undercoat (which means they are a lot less allergenic for my fiance) They are soft like bunnies and shaped like greyhounds, but much smaller. Full grown, my girls are six and seven pounds. One was ill as a baby and did not develop to regular size. She is also partially blind, but would have been 100% blind if we had not rescued her when we did. They are 2 and 3 years old and wonderful. I got Elizabeth Kitty Stanton two and half years ago as a kitten. She is a big time cuddler, shoulder surfer, lapsitter, and scarf, and she adores her "mommy." We got Mary Wollstonecat (Wolly) about 9 months ago as an underweight, bald, mostly blind, very playful abused thing. She is now furry, active, able to see a lot of things, cuddly, healthy, and very clingly. Both cats follow me everywhere I go and both love lying on me. They are super warm, so sometimes that is overwhelming. They play a lot too! I also had to babyproof my house as they can jump from the floor to my fiance's shoulders (he is 6'2")! Needless to say, there are no glass items out anymore. I bought my mom a rex kitten too and he just overwhelmed her. She had elderly cats for years and now this one is a giant ball of energy. He is actually quite large as there is a big size discrepency between male and female in the rexes. He is 10 lbs and very very long. I wish I knew how to post pictures. Congrats on your new Kitty!! Good luck with the big size! He is adorable! Be ready for a playtime!

Many of those symptoms may be related to rapid, unhealthy weight loss and the weight loss may be a result of the EE. I do, however, have some similar symptoms. I have leg weakness, gastroparesis with bad reflux but also diarrhea (now well controlled with meds) and I also have mild celiac disease that has improved so much with diet that I no longer even test positive for it in the recent blood tests! (was positive before though). I also get rashes. Vanderbilt thought I had mastocytosis when I went to see them- so much so that they did not even think to test me for other disorders. I was negative for it, but had very high histamine levels nonetheless. I still get rashes. That is why I have a tentative Dx of Lupus with a definitive diagnosis of Rheumatoid Arthritis. But, I have negative blood tests. My RA was found through bone scans and years of monitoring the progress of my inflammation. I also found out that esophageal spasms and the blood and protein in my urine were related to autoimmune problems. It can take 20 years for blood tests to be positive. One way to find out what the rashes are is a skin biopsy when the rash flares. I have to rush to a dermatologist who specializes in Lupus rashes and other related disorders when my rash reappears (it was bad for months but plaquenil has improved it dramatically so I only get it for two days here, three days there and often the entire length of vacations or after sun exposure). That is another way to check for Lupus- a skin biopsy. The plaquenil has made a HUGE difference in my life, although I am still getting worse. My illness progress has slowed a lot though. Mastocytosis can be tested with a 24 or 48 hour urine (I forget already) by lots of places. It does not need to be Mayo or Vanderbilt, but they would have thought of it if we had not mentioned it. Endocrinologists might have some other ideas too. Mastocytosis can be treated with H1 and H2 blockers for a while. After the urine is positive, they actually done a bone marrow biopsy to see how far the illness has progressed and other details. It is a very rare disorder. I think the main thing for Linda is to put on weight to gain strength. Many of her symptoms will improve after that, I think. Unfortunately, she might have to do that by having medical intervention in the form of a Gtube or a IV nutrition et al. If her esophagus is the problem, she might have to bypass it by putting a tube in the intestines or she might have to supplement many times a day with high calorie liquids. That is what I had to do to go from 20 lbs underweight to 10 lbs over (oops, once I put on weight and found good meds, I also rediscovered food). An allergist might also be helpful for discovering the rash's origins as well as any food allergies that could be destroying her gut. I suffered for years and years but am now functioning pretty well (can't work full-time or anything, but I do a lot and get around very well but I used to be mostly bedridden) Tell Linda we all hope that she gets better soon!! I hope she finds some answers as well- we wish her luck. I hope I helped. I only post when I think I have something helpful to say and when I have a chance to go online, but Linda might remember me from over the years (I started posting on NDRF 8 years ago!) Best, Leah

I have very low iron and hyperadrenergic POTS.

It was cool to see them talk about cardiogenic disorders and during the EP, they triggered SVT in her. They acted super scared about it, my dr. was excited because he got the response he wanted. My drs. never seemed that worried about me in front of me, at least. I had a radiofrequency ablation that was very successful and I do remember it. I was awake, but "drunk." The shock they gave me hurt but I didnt care because i was loopy. Also, my anaesthesiologist was hot and fun to look at with googly eyes the whole time. I was excited to see an EP study done and they acted like it was a frightening and super dangerous thing but my electrophysiologist does like 3 catheretizations with the occasional rare ablation. It is fast and easy for him.

Hi, It sounds like you might have an unrelated neurological type pain. Burning is often caused by problems with a nerve. Neurontin is often very helpful for this type of pain. I was diagnosed with probably lupus and definite Rhuematoid Arthritis. I have had pain for about 7 years and POTs symptoms for 10+. My dr. only recently decided to treat more than just the symptoms as needed. Now I take several meds that have been very helpful for many of my symptoms. See a neurologist about the pain first then find a new rheumatologist, one that knows about fibromyalgia and about the many many other types of autoimmune diseases. You can look some up under the AARDA website. That was helpful for me. There are many types of connective tissue problems that can cause pain and aches. Aches can also happen to people who do not get restorative sleep. Many of us fall in that category and then have pain. Good luck. At least find someone who can get minimize the pain, that is a necessary. Leah

I live in Brooklyn. I can get to Long Island, but not CT. I would love to do somewhere in Manhattan. When were you thinking? I will be away June 3-20 and August 10-27. I am doing the Arthritis Walk on May 21, also my birthday. I know that is too early, but if anyone is interested in joining me, let me know (I have Rheumatoid Arthritis and sero-negative tentative (leaning towards definite) Lupus dx) mastergaia@yahoo.com Best, Leah PS. I am partial to museum visits where we all get wheelchairs and have a dysautonomia parade! :-) I would love a mini-meeting, of course, too. Just thought my first suggestion would be funnier. I love to eat too and I know of a few places that have gluten free menus. Let me know.

We could do an event, like a walk for Dysautonomia and Fibromyaligia or CFIDS or something. I am doing the Arthritis Walk on May 21 and I am psyched and people understand. i am handing out pamphlets all over related to it. I heard about this site from people at NDRF and DYNA way back when the Dinet was just an information site and not a place for discussion. I talked to Michelle on NDRF (I was leah1321). I felt much more connected then because it was a smaller group and I met some people, including Michelle, at the NDRF conference in DC. I also know people from DYNA on this board. I have been talking with dysautonomia people since I was 18, seven years ago now. I do not see many of the people I met then on the board, but occasionally I do, like Sophia3. Anyway, this is a great site- continue the hard/great work!!! I would like a Q&A section for patients going to new doctors. It is hard to know what to do when you get to one. I have these for my upcoming wedding and they have been invaluable. We could do for different specialties and different problems. Like rapid motilty or gastroparesis questions for GI docs. NCS symptoms or POTS or other ones for cardiologists and neurologists. Etc. People could mix and match important questions related to what they are experiencing. There could also just be a generic Q&A for the newbies going to their first specialists. It is important to seem smart, articulate and well-educated when going to doctors or they just don't take you as seriously. (not too educated about a particular disorder though of course --75% of drs hate that, I think-- just educated enough to know what questions to ask). Leah

yes, i have had these several times. it makes me feel like they think i am a crazy, whiny complainer when I know that something is truly wrong. If I get a weird response, I ask a second doctor of mine to test what he/she thinks and then I decide if I am just overreacting. Sometimes, I will bring up the issue again a few months later with the original doctor and might get a completely different response. One doctor I love recently started cutting ALL of his appointments short and he has nurses do return phonecalls now. I hate this but I learned that he does it to every single patient. At first I thought he was doing it as a dismissal, but now I think he is just trying to step back a little as his practice has gotten quite large and he is in his late 50s, but still works everyday. Anyway, I feel your upset. :-) Leah

I get this sometimes but it gets better after I sleep it off for some reason. If yours is not better when you get up, then get thee to a doctor. Leah PS. I LOVE crochet right now. I am obsessed with designing new projects.

I also have gastroparesis with diarrhea. I had an EGG that discovered that I had almost no movement of my stomach. There is some there, thankfully, but it is slow when it happens. However, whenever any food hits my intestines, its transit is very rapid. I have found some miracle drugs that help. I take ultram for the diarrhea actually. A motility specialist told me to try the opiate pain killer and it was amazing. I went from agonizing GI pain and diarrhea 5 times a day with nausea and esophageal spasms to diarrhea only about once a week. The pain is much better. The upper GI stuff has been much more difficult. I take zelnorm in a very small dose before meals and bed but it is not the perfect fix. I heard domeperidon was better, but I can't get it and my doctor is worried about getting it for me secretly since I have so many other issues. However, the zelnorm does push food through and I put on about 30 lbs on it (was 15-20 underweight before). I am hungry a lot now, which is weird too, but usually good. I can eat more foods too. I do have to watch my diet though. Search online for the gastroparesis diet- it works. I started with two liquid meals a day, one medium sized meal and snack and worked up to a normal diet. I also have celiac sprue so I have to watch even more closely what I eat too. For the esophageal spasms, I take nulev under the tongue or even ativan (it is anti-anxiety, but it is also a smooth muscle relaxant). With the zelnorm, you have to be careful with the balance so you don't get the diarrhea side effect. I take only 1 mg each time and the recommended dose is way higher. Sometimes, I get the side effect if I don't follow the 30 minutes before a decent meal thing. But, it has all been worth it. I used to make a sloshing sound when I moved from alll the fluid in my stomach, but now I am able to conduct a normal, slosh-free existence. Now I even have to lose 10 lbs! I do still have nausea almost constantly and lots of spasms upwards. I get heartburn and had throat damage from the acid up there (I sleep with the head of my bed tilted and I take nexium and protonix). I fixed that and can sing again, phew. These conditions are very difficult especially when upper and lower do not have the same motility disorder. Good luck finding the best solution for you. I made it work and I hope you can too. Leah

hi, I have horrendous neck pain all the time. I manage with lots of drugs, stretches and special pillows. When I have a particularly excruciating flare, I use microwaveable heating pads that smell very yummy. I use an organic bengay like thing and also have a muscle relieving bath lotion. I take a muscle relaxant daily, along with ultram, etodolac and neurontin, but I often have to increase the doses of the first three as needed. I take narcotics for the worst pain. I also had paralysis. It was on my left side. I was forbidden from playing violin and viola and I am devastated about that since I was a competitive player and loved to make music. I have permanent weakness on the left side anyway from hemiplegic migraines, but the neck stuff makes it worse. I now have decreased feeling in my left hand (my legs have always been much worse). I get bad bad swelling at the base of my skull too and then down the whole c-spine to my shoulders and then to my shoulder blades. My jaw is super bad too. I tried PT and chiropractors and massages and the only thing that helps is the medical massage that I can only afford to do several times a year and then it only helps for a day or two. I have been diagnosed with definite Rheumatoid Arthritis with a probably link to Lupus so they have just decided that my neck stuff is part of that and that it is degenerative. My MRI showed c-5 and c-6 herniated discs but the problem is minor. I have no curve to my neck at all any more. Also, I can't straighten my shoulders and neck in the correct posture way and I hunch over. I hate that part. My stuff might be Lupus but now I feel like POTS might be connected to all this neck stuff too I know my neck movements can sometimes bring on a POTS episode, hmm.... Sorry I can't help, but I wanted you to know that "I feel your pain." :-) Leah

Hi, I take seasonale right now because of irregular cycles, horrendous cramps, anemia and nasty ovarian cysts. I have tried five different types of bc pills. My favorite was ortho-novum but they stopped making it when they started making orthotricyclen lo. The seasonale is amazing for my gyn symptoms and for my POTS. it takes a month or two to get used to but then it helps so much. my period is very light and there is little pain. I do have some horrible migraines, fatigue, hr issues, nausea, dizziness and aches and pains the week before my period. I have intense bloating for one of the three months of the seasonale cycle (I only get my period 3 times a year!!). I used to get migraines that hospitalized me every time I got my period, but now they are only terrible for 3-6 straight days one every three months (or at least the hormone kind which does not seem to respond well to meds). I do have some sexual side effects (sorry, embarrasses me way more than it does any of you. It is a hard thing to deal with) and I have the terrible bloating. Otherwise, very few problems. With Ortho Tricyclen lo, I had horrible depression and cried for no reason at all one day every month. Be careful with that one, my friends had it too. I like the three weeks of different hormone levels, it feels more natural. I just wish I could do three months with that style in a row with no period. I think I would try a different kind next time though since it made me insane. At least I knew there was no reason for the depression and I knew I would wake up the next day feeling cheery and happy again, so I just had to lock myself in my home with good movies and wait for it to pass. :-) Good luck (I am sure this is not a problem with most people who take it). I say BC pills=good because they raise blood volume too, so I hope you see benefits soon. Leah

I take zanaflex. It is a muscle relaxant. I have taken it for about 5 years now and I really like it. I take it at night only though because it makes me sleepy and I never got used to that. I sometimes take small amounts of it when I have a headache though. I take Etodolac/Lodine which is like Mobic and I like it. I liked bextra more, but alas, that is no longer available. Mobic is apparently harsh on the stomach but very effective for arthritis pain and other sorts of inflammation. Just remember to take it with food and a lot of fluids. Leah

Don't get too down. you might be one of the lucky majority who does see improvment or who gets better. The people who post on this site are mostly the ones who did not see improvement over a five-year period but a majority of people with our illness do not have it permanently. they do not usually post anymore. If you got this suddenly, you have a much higher chance of getting better. it will feel terrible for a while, but i want you to know that there is hope on the horizon for many of us. I have been ill for about 9 years now and I had symptoms earlier in my life. I probably have Lupus or Rheumatoid Arthritis that caused all of this though. I am getting worse in a lot of ways but I have found a great combo of meds (took a while) and behaviors and a diet that make it possible for me to function as a full-time grad student travelling all over NYC. Anything can set me off but I know what makes me worse and what helps. I have found a lot of things to help, in fact. Every one of us is different and a lot of experimentation will help you to find what works best for you so you can manage for the long term or, if you are part of the lucky majority who get better (really, it is some 80-90% with POTS symtpoms who get better, the doctors claim and I have seen many who no longer post on these boards. Over the last 7 years of posting, i have seen many come and go who at least found a way to make their lives work even after being bedridden like i was.). best, Leah PS. I hope I cheered you up.

Good Luck on the exam. I have an 8-10 page paper due tomorrow and I am only 2 pages through, oy. I find that I get shakey and very ill for every single paper, presentation and test and I try to ride the adrenaline through. I think it is a mixture of stress and pushing too hard to get all the studying/writing done. We feel very nervous that we won't even make the test too. I am a very laid back person, but I think that sub-consciously must get stressed. Also, I find that sitting to study for a long time is hard. I have to force myself to take good breaks. I try to do some studying lying down. I do it at home and I make sure the temperature is right, I am well-hydrated, had food that is easy to digest, and slept well the night before the studying. However, I always end up collapsing after the paper or final and sleeping for several days. I get quite ill and need to rest for a while. You need to be careful and take care of yourself first. I have gotten infections and pneumonia during finals periods. I think you are doing a great job and will do well on the final. Feel better soon. (PS. you might want to ask for accomodations for your tests. I take mine on a computer and i used to take them in a private room with climate i controlled where i could take breaks, read to myself, drink and eat as needed, stretch and so on. I also would reschedule my tests for afternoons when I know i feel better- this might require taking them a day early though sometimes. I hand in papers when I am feeling better which might be early or late, but I ask the professor in advance so that I do not have three papers three days in a row or two finals in as many days which I know would destroy me. Find out if there is a disability office at your school or if you can arrange individually with your prof to have accommodations. they merely make the playing field level for us since we start at a disadvantage so don't feel weird about it.) Anyway, good luck again. Best, Leah