NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Help, I am not sure where to go from here…. › Reply To: Help, I am not sure where to go from here….
Hi Christina, I’m so sorry to hear the menu of issues you have. It’s lousy, but think of it as the only way to go is up, Honey. If it helps to know, many of us here (including myself) have most, if not all of your conditions. Even with “Dr.” in front of my name, I can’t tell you how many docs suggested I see a psychiatrist! You’re certainly not alone there. In the Baltimore area, there are a lot of doctors who deal with connective tissue disease, and they “get it”. I agree with mother1991 that applying for disability is a good idea. A social security disability attorney can help you, and their fee is limited so you don’t need to worry about losing your shirt to pay for that help! Then you can see some of the experts to get some direction. I really like Dr. Clair Francomano in Baltimore, and she oversees my care (and that of my kids). She also understands the issue with the pressure in our heads. Diamox will help with that, but it also lowers blood pressure a bit, so you’ll want to work closely with a doctor. It sounds like you fit the “mast cell disease” profile, too. That’s good because you have something to work with. Many people start to respond with zantac (and benadryl, in your case). Again, Dr. Francomano is on board with this, too. Our family just added Gastrocrom (by prescription) and are noticing that it is helping us a great deal. Dr. Castells is the expert in this. Meanwhile, you may want to check out tmsforacure.org . The people there are wonderful, and have talked me through many a complicated journey! You MUST see this Patient Experience Letter, too. It’s here (see the first download?): mastocytosis.ca/ Humbly, I ask you to download The Driscoll Theory, Part 1 to explain most of it (see it on the home page of this website?). This will help your doctors if you can’t see someone “in the know” yet. Just find someone who is willing to listen and work with you. The drugs I mentioned are not terribly expensive, they all come generic (except for Gastrocrom, but there is a cheaper pill available in Canada). Hang in, Honey, and please keep in touch with us. Many of us have walked this road before and can do our best to be your tour guide. OK? You are certainly not alone, although I’m sure it feels like it at times. Big hug…