Jump to content

joanie

Members
  • Posts

    40
  • Joined

  • Last visited

joanie's Achievements

Newbie

Newbie (1/14)

0

Reputation

  1. Hate to muddy the waters here, but what about chiari? It is very very rare, but I undersand that it comes from the brain squeezing into the base of the spinal column....casuses great headaches and neck pain, I think.....there is a Dr. Hefez in Milwaukee who will look at MRI's sent to him....I may be way way off here, but I know someone who is seeing him next week with POTS, and bad head/neck things....good luck...
  2. conversion disorder? Phooey. If you haven't been to a POTS specialist, I would first go there, instead of spending all this time and money with the psych people. If you don't have a conversion disorder now, you will by the time you leave them...When you are not feeling well, it is hard to think straight, and , eventually, you get beaten down. Mayo is good at diagnosing things- can you make it there? What about this Dr. Matthias in the UK? Please don't say goodbye from the board. If you take this journey, we would like to hear about it. And, of course, put our 2 cents in about it..... Joanie, Mom to Lindz, who was first diagnosed with bi-polar when she stopped getting out of bed in the mornings. I bought it for a while- didn't know what else to think. I STILL feel bad about it. Do you have a psych problem? Maybe, so what, lots of people do. Is it the cause of the POTS like symptoms? Doesn't sound like it.....sorry to be so direct, and I may be completly wrong. Just don't want you to go down the wrong path like we did.
  3. Janine, When my daughter (16) developed joint pain with her POTS, we were told it was most likely not from the POTS, but from the accompanying EDS . (Ehlers Danlos Syndrome- there is a web site on this, EDNF.org.) Lots of people with POTS have EDS- usually is mild, can mess with joints. We were'nt given any ideas on how to handle this- knee brace maybe if the knees slip out of place, like Lindz's do. (Be careful- not too tight- if it's really bad, might want to get it fitted- insur might pay.) Bone spurs, I don't know...maybe that makes it a whoe diff thing. When my college son had his tonsils out, the procedure wasn't bad, but he swigged a lot of liquid vicodin afterwards.(He does not have POTS>) He got dehydrated from not being able to swallow much, and wound up in the ER for fluids. Felt a whole lot better after that. So, I would say, maybe you can stay there a while and keep getting fluids, or, make arrangements to return for the fluids. Good luck- he did stop getting so sick from colds all the time after he had the tonsils out. That should uncomplicate a few things for you..Joanie
  4. If you ever come through Chicago, you better tip. There was a story a few years back at O'hare airport where a man didn't tip the porter wheeling his elderly mom to the gate- I think the porter even asked him (the nerve!) and he refused. The man didn't go to the gate. well, the porter left his mom somewhere- not at the gate. Is this outrageous? Of course. But, I say, tip a few bucks and don't worry...
  5. I have the understanding from several dr.s that pregnancy can actually put many "chronic" illnesses, like POTS and MS, into remisssion. Joan
  6. Oh, no, I have never heard lethal. One Dr. told me that plasma exchange has been done safely for a very long time. I guess it is just uncomfortable (cold feeling- but sounds mild when compared to POTS symptoms) , takes a long time (many sessions) and , of course, is expensive. I think Dr. Grubb just meant that unless we had some reason to think that Lindz may have an autoimmune form of POTS (and he doesn't think that SHE does) it would NOT be something to do just to try. Sorry if I caused concern. Thanks for your responses- I wondered what would lead one to conclude that an automimmune response might be present in some and not others...Good luck, everybody! I still think this treatment sounds very exciting, if only for some. Joanie
  7. I will join you in prayers. My thoughts and hopes are with you. Joanie
  8. As I understand it, mestonin helps by acting on muscles to help them contract. (It can also help the gut contract, helping intestinal problems. Or- giving rise to upset stomachs. ) About a year ago, when my 16 year old was able to go out more with friends, she would take it just before she wanted to go out. She said it helped her muscles to enable her to walk farther. ( She still crashed in proportion to the amount of walking she did, so I didn't really see a long-term benefit there. )She didn't take it all the time, as it did upset her stomach.(maybe if we had stuck with it, we would have seen long-term benefit.) We have since found that an occassional, smaller dose does seem to help her digestive track move. Now that she is more confined to home, her muscles have become too tight thru lack of use. Now, if she takes the mestinon, she says it hurts. I don't really know if it is medically advisable to take when needed, but, it did help her for a while. Perhaps sticking with it more regularly and adjusting the dose is the key.
  9. I, too, am curious as to why the docs' think you have an autoimmune response. I took my 16 year old to Dr. Grubb in Dec, along with the New England Journal article. We were ready to try plasma transfer...He said absolutely not, with her, as she did not have an autoimmune response, as some people do. He said she has what he is now categorizing as "developmental" POTS. (It came on gradually with her at puberty.) He said plasma exchange is like dialysis- takes a LOOONG time, and, it would not help her. I hope we hear updates on this soon...good luck to everybody...Joanie
  10. Oh, sure. Some sleep all the time, some can't sleep, some are tired because they don't get quality sleep at night, and, it can change during the course of the illness. Sorry.
  11. Lots and lots of people with POTS (and, I imagine, other things drs. can't explain) have been diagnosed with psychiatric issues. My daughter was actually on meds for bi-polar by the time we hit Mayo and got the correct diagnosis. POTS seems to start in many diff ways. We didn't start out with pain, but we have it now. Mayo is very good at diagnosing things, but the CC is , too, I hear. Good luck- and keep searching. Joanie
  12. Sorry to get off subject, but, can EDS cause pain in the bones, as someone mentioned? My daughter has complained of this..I thought it a stange thing to be able to identify- pain in the bones. Thanks, Joan
  13. Dr Grubb gave it to my daughter a year ago- it helped tremendously. Then, there was a shortage, and her DR here said there was a black box warning on it and to take her off. Then, when we wanted it back, he said OK, but we had to show she doesn't have long QT. Now, you would have thought if she had that, it would have shown up before. When we went to another Dr. to see if she had it, she said she really had to study the EKG- it wasn't always easy to see. Also, she said it is not uncommon with POTS patients. I really don't understand any of this, but, we are waiting for the results...Joanie
  14. Thanks, Melissa. Somehow I guess I missed the earlier posts...Anyone else have any info? Traci, we're still pulling for you!!Joanie
  15. Traci, How is it going? I am very interested in this. I sure hope you will soon begin to feel better. Anyone else out there been tested for this? Best wishes to all- Joanie
×
×
  • Create New...