nantynannie

I too have leg pain, deep aching pain caused by immune complex vasculitis. Willow, what you describe sounds like vasculitis (aching with the spots). Have you ever asked your doc about it?

I was on Accutane years ago...hmmm.

Don't know if this helps, but I read in an article once that in order to get the correct reading, your blood has to be taken right when you stand up during your tilt test for instance (during the hyper reaction I mean). My tilt test says excessive catecholamine response because I was shaking so badly, but my 24 hour urine test the week prior was normal, even low I think...

Hi Emily! So sorry you are not doing well. I guess we had higher expectations for ourselves...well, it sounds like it will get done afterall. I finished with Dr James Russell (Michigan) and have not done any in quite some time. I got all of them done in the beginning when we first said we would do it. Good to hear from you! Ann

Just wanted to let everyone know that I recently purchased a Handy Seat and it has helped alot with getting out of the house and trying to keep up with my family. I use it to lean on and to help walk and when I am looking at something, need to stand in line, or just need to rest, I fold it out and sit down whenever and wherever I need to. It takes about two seconds and it weighs less than 2 pounds. This thing is great and fairly inexpensive. I bought mine at Sport Chalet under the name Sport Seat for 19.99. They are also available on the internet under the name Handy Seat. Just FYI, I purchased and tested a few different kinds and I prefer the ones with the open handle on the Sport Seat and the Handy Seat because they are easier to lean on. These things are great. Of course, I get some strange looks, but I also get alot of questions as to where they can be purchased. Hope this helps for any of you who need to sit frequently. Ann

Hi there, So sorry I have not been able to keep up with the board or my assignment, but I wanted to give the moderators the update on the work I was able to do (very little unfortunately) so that no one else has to duplicate it. I started on the United States and did Alabama through all of Michigan. Unless it is noted below, all information is correct and unchanged: Alabama Dr. H Cecil Coghlan phone # change to 205-934-3897 Hawaii Schatz was no longer there, did not spend much time trying to locate him. Illinois Dr Todd Davis 2300 Children's Plaza (add #13 to address) Michigan Dr Sid Gilman Department of Neurology University of Michigan 300 North Ingalls 3D15 Ann Arbor, MI 48109 734-936-1808 or 734-936-9020 I am sorry I was not able to do more as of yet. I will keep trying. Ann

SORRY! I guess it was Becca who posted about the tingling and swelling!

Hi Bamagirl, I read your other post about tingling symptoms and swelling. I have the tingling also, and have the nerve damage you are talking about. I was diagnosed through symptoms, clinical exam, and EMG/nerve conduction studies. Just FYI, my first studies came back "normal." It took several years for my symptoms to show up as actual sensory nerve damage on the nerve conduction studies and even now the results fluctuate from test to test. It depends ALOT on the expertise of the person testing you. Also, nerve damage is not the only thing that can cause the tingling. Just inflammation and swelling can cause tingling and so can an allergic reaction. Check out the posting on Mast Cell Syndrome. What are your doctors saying about this? Hope you find some answers.

Hi Bamagirl, I am wondering if your symptoms are more or most noticeable around your cycle? Many of us get worse around that time. For me, though I have symptoms everyday, the week after my cycle is usually the worst. Hope you find lots of support and answers to some of your questions here.

A few more suggestions: An electric razor so you can shave those legs even when you can't shower. A vanity stool and a hair dryer stand with a fan nearby. Look Ma, no hands! Premoistened bathing cloths (most don't need rinsing off). "Dry wash" spray for dread locks helps keep hair clean between washings.

Thank you for posting this study, my doc was very interested in it and thought that I could very well have this disorder. Problem being is when I first got sick, they tried all of these anti allergy medications on me, which worked well for a short period, and then they stopped working. Very much like my body (and others on the board as well) adjusts to the BP meds. I guess it is not only hard to detect, but it can also be hard to treat. Ann

Hi Terry, My BP also went up on my tilt test, but I was not on any meds. It eventually dropped at about 25 minutes. Did they say what her heart rate was or did they give you a diagnosis? I am figuring you probably have some type of follow up appointment with the doc where you will get some additional info. Meanwhile, don't worry too much, like Kathy said, if it was something terrible, they would have intervened right then.

Hi Julia, I am sorry that maybe I don't know your entire situation, but when are they going to do something about the myelopathy? As I am sure you know, it is usually a fairly serious condition. Are you going to have surgery soon to relieve the pressure on your spinal cord? Again, sorry that you might have already given info on this, just wanted to check on your condition. I can definately relate on the number 2 thing, like everyone else said, my doc told me it is the vasovagal response. Take care as best as you can-hope you are better soon, Ann

Emily, This is so funny to me, I have felt soooo badly that I have not made more progress thinking that you have probably finished the whole thing! Meanwhile, you are thinking the same thing about me and in reality, we are both exhausted and trying to figure out how we will get it done. I am sure that we will get it done eventually. In the meantime, neither of us should stress that the other is doing a better job. We are both doing just fine!!! Hope you feel better soon. Ann

Hi there, I looked again for an email from you but haven't found one...anyway, just wanted to let you know that it has been very slow going on my end the last couple of weeks. I was gone for a lot of the time, etc. How has your progress been going? Geeze, for all I know you are completely finished with the whole thing!!! I will start again on my end tomorrow. Hope all is well. Ann

Just thought I would add a little something in case anyone is interested...I have/had severe neck pain that radiates down my left arm caused by a protruding disk and nerve compression. I am not a candidate for surgery because the disks above and below this one are in bad shape also. Anyway, after 14 years of NOTHING working, I finally found something, it is called Zonegran. It is like Neurontin, but Neurontin did not work for me. I take 400 mg at night. Hope this helps someone. Ann

I haven't gotten anything on this account or on Yahoo, please resend it, but meanwhile, I will be gone. Hope all is well. Talk with you soon.

Hi there, I have been working on the list, just a few on most days, but wanted to let you know that I will be out of town for a week in case you try to reach me. I will start again a few days after I return. Hope you are well. Ann

Emily, I like your idea of each starting at opposite ends. I'll do as you suggested and start and the top. Maybe when we get close to finishing the US list, we can figure out how to do the international. I also have unlimited long distance so that is good for both of us. Keep in touch. Ann Thanks Michelle and Melissa!

Hi Michelle and Emily, I could split the list with you Emily. Let me know what you are taking and I can do the rest. Ann

Amy, After reading the other posts I am wondering if donating is such a good idea! Now that I think about it, the one time that I was able to donate before I got POTS, I passed out and did not do too well for a long time afterward. I think that maybe it is not so good to have a lower blood volume for a while after you donate. Maybe the lower hematocrit is just God's way to keep you safe. Ann

Hi Traci, To give you an idea, I was tilted at 75 and immediately went to 167 heart rate with an increase in bp. My bp did not drop till 25 minutes into the test. Again-you do not need a drop in bp for POTS, but even if he was looking for one, he did not wait long enough. Most tests are a minimum of 30 minutes. After 30 minutes, if there is no reaction, many times they infuse a medication isopropenol (spelling?) I think to try to induce a reaction in case you are having a good day. It sounds like you not only had a bogus doc, but possibly a bogus test. I think you should do some research and get some recommendations from board members and get a second opinion if you can. Sorry this happened. So many docs are misinformed about this illness. Till this day, my cardio believes that "true" dysautonomia means that bp goes down. I am so thankful that I got a diagnosis from somewhere else and he accepts it (begrudgingly) because it is from a well known medical facility. Ann

Traci, I hate to disagree with your doc, but your bp does not have to be low to have an autonomic problem. I for one have increased bp upon standing with increased heartrate. My bp does not fall until much later in the game. Look at the pages on DINET and you will see this info and many symptoms. Maybe you could print them out and take the pages to your doc next visit. This type of thing happens a lot with uninformed docs. My cardio used to think the same thing. I am not saying you have dysautonomia. I am saying that you do not have to have a drop in bp to have POTS or dysautonomia. Did he do any other autonomic testing? How long was the tilt and how many degrees? Did they do the medication part? Ann

Hi Amy, I don't have any answers for you, but I think you should check with your doc as to why you are not absorbing the iron you are taking. Maybe there is a solution and you can straighten it out, feel a little better health wise and get back to donating when you are up to it. Heaven knows we need people like you! Ann

Hi Danelle, You got a lot of good info from our friends here. One thing that stands out is to write down all of your questions. Your doc should be able to tell you if your ANA is significant by running certain antibody tests. You will have to wait a bit for the tests to come back, but there is also a good chance that when he is done with your exam and history that he will have an idea as to what is going on. Please let us know how it goes. I hope your doc is a good one and I hope you have a good appointment with him. I am glad that you are not too nervous about this. Ann