Discussions that mention klonopin

Rare Disorders board


Hi Janilee,
I would like to share my story; so that maybe it can help you:) I was dx w/systemic mastocytosis in 2005 after having biopsy from hip area (where I had dark spots remaing from previous hives etc) after the biopsy my dermapathologist suggested I see another Doctor, and at that time I was in the process of going to another Health plan. I eventually had a bone marrow bx which determined (systemic mastocytosis) I was immediately put on H1 and H2 antihistamines;benadryl in evening and Loratidine for daytime. I see a Hematologist for this, and I am her only sm patient. I have lab work done every 3 months, and my (Tryptase level is the one that is really looked at closely) my Tryptase level is at 24, and I have the Indolent form of sm. Headaches, bone pain, cognitive problems are what I am dealing with. Some days are better that others. Recently had an MRI of my lower spine; soon to get results. Within the last four months the bone pain has gotten worse to where it wakes me up, but I can't take many pain meds. due to the fact that I am allergic; almost anaphalactic shock (I have an epi pen just incase at all times) I do take Fioricet for chronic daily headaches (for me it works on the headaches, but nothing else) everyone is different with sm, and with the meds they take (regarding bad reactions etc.) So the more you stay on top of this with your Doctor the better.:) I actually have had sm probably for a long time, but was misdiagnosed with fibromyalgia about six years ago, but turns out that was not the case. I see a hematologist and for now it's just having my lab work done and watching out for my triggers (for me the heat is my worst trigger; then I really have to watch my stress, I try to keep things in check but it is hard. Sometime I have a FLARE or an EPISODE which makes me basically in bed for a few days. For me also klonopin has really helped me out. I started getting anxious about my dx. etc. and suddenley started having panic attacks (never had them until my early 40's) Only you'r Doctor can advice you on what might work for you, but if you feel bad don't give up....................you don't have to be in pain, and you don't have to take a medication that you know has not helped you...........(I found that out the hard way) was told to take Prozac (which I am not against the med. for some it helps them very much) but for me it made everything magnify to where I was now WIRED with all of my symptoms; not a good feeling. I hope I didn't ramble too much; just wanted to put a little info out to you so you can talk with you'r Doctor, and atleast get the feeling of knowing you are on a positive treatment plan for yourself. Rared Diseases are a double whammy because (for me) I would find that even the specialist sometimes don't really know about a certain/new treatment etc. So I bring in information to help the Doctor so they can help me!!!!!!!!! Alot of info on the net regarding sm. good luck to you and post again!!!!!!!!!!!!!!! I would love to know how you are feeling/coping etc....:)
Take Care, Summerbreeze:angel: