Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 I'm Peggy, 61, diagnosed last Dec. with mononeuritis multiplex - secondary to anticardiolipin antibody syndrome. The dr. who did the dx is a neurologist (and his sign also says rhumatologist). The first part is an auto immune problem that affects the nerves in my hands and is not common. I now have sensations in my hands that I would have if I had carpel tunnel. This is certainly better than the sudden onset where I felt like I had a boxing glove at the end of my left wrist. The second one is an antibody problem that I have been told causes blood clots. I did have blood clots 3 years ago when I was undergoing chemo and have since found out that I did have the acl syndrome then - but no one was sure if it was that or the chemo or the cancer or the combination that caused the blood clots. Now, much to my dismay, I'm pretty sure I have CF. I've been having a problem with no energy for weeks now, but this past 4 days I'm barely able to get out of bed. I am in terrific pain, my muscles are weak, my hand problems are worse, and I just plain all around feel like dog doo. I've decided (I think) to go to Stanford and see what they have to say. I don't like this local dr., and I need to go to someone I can trust who will not just try to crank me full of Prednisone. My question for you all is what kind of dr. do you generally see? Neurologist, rhumatologist, or immunologist? I'm sure I can get a referral to Stanford from my oncologist, but she's pretty much in the dark when it comes to auto immune stuff, so I'm not sure she would be able to refer me to the correct person. After reading this, I'm not even sure it makes sense. Any insight you could give me will be greatly appreciated tho. Peggy in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 Hi Elaine...My name is Jan...I'm from Hill CA. I have been on disability for EBSCFIDS for 15 yrs. I do have some joint pain at times but have not been diagnosed with fibrmyalgia...just the above. Welcome to the group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2006 Report Share Posted May 23, 2006 Hi Elaine, I was diagnosed w/FM 6 yrs. ago and have to deal with Work Comp for all my treatments. They have consistantly been down sizing my treatments, and now they will only pay for prescription meds (the cheapest route for them) so I have been consistently going downhill since. I have heard of guaifenesin but have never used it. The biggest problem I've run into with therapy is the COST! Being on a fixed income and Medicare really makes it hard to seek out effective therapies (water exercise, masssage, acupuncture, supplements, etc.). Welcome to the site, a lot of great people hear to talk to! eknetzer wrote: Hi , my name is Elaine and I have cfs and fibromyalgia. I live in the Long Beach area. I have had very good luck treating the fibro with guaifenesin. An expectorant medicine. I have been on disability since 1999 because of the cfs. I would very much like to hear from people with fibro and cfs. Sincerely, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2006 Report Share Posted May 24, 2006 Jeannette, Good luck at your hearing! I will be facing the same thing soon! Jane Jeanette French wrote: Hi /Elaine: I am sorry to hear that you have to deal with Workman's Comp. I can imagine they are just as bad as other social services. All they want to do is get rid of us off their roster, and they don't care how. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2006 Report Share Posted May 24, 2006 Hi : I have a group called Allsup that is my attorney. They seem pretty good, and they will be there with me at the hearing, thanks goodness. I am hoping to talk with the man who goes with me so we can make sure I say and do the right things. This is my 3 rd try and before the Judge, and I sure hope he is a kind man....I so hope I get it, I will be months getting over it, if I don't... Thanks Jeanette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 Kim, Welcome - this place is a godsend. I know what you mean about feeling old, I'm 43, but there are days my 73 year old mother gets around much better than I. Try not to push too hard trying to please your husband - I made that same mistake and I'm not sure if it's worth the price we pay. Hang in there girl! Everyone here is GREAT support! Jane Kim Roy wrote: Hi, I am new to the list and am looking forward to hearing about other " like " folks who are living with CFS. I was finally diagnosed with CSF after every other possible diagnosis was exhausted and have tried numerous medications over a period of two to three years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 Hi Kim, Welcome !!! Jeanette New member > Hi, > > I am new to the list and am looking forward to hearing about other " like " > folks who are living with CFS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 Jeanette, Glad to hear you have some one in your corner. Good luck and God Bless. I will keep you in my prayers. Jeanette French wrote: Hi : I have a group called Allsup that is my attorney. They seem pretty good, and they will be there with me at the hearing, thanks goodness. I am hoping to talk with the man who goes with me so we can make sure I say and do the right things. This is my 3 rd try and before the Judge, and I sure hope he is a kind man....I so hope I get it, I will be months getting over it, if I don't... Thanks Jeanette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 Kim, Welcome to a great place to get support. I'm fairly new here also, but have read and shared with so many on this site, it has made a difference just being able to talk to others in the " same boat " . I'm 42 and have been diagnosed since Sept. 02. I have also gotten gradually worse, so I don't know how they can say it isn't a progressive disease. Anyway,I do many of the same things as you because I want to try and have as normal a life as I can. Plus I don't like feeling left behind, so to say. Anyway, welcome and I hope you feel great love here. Gentle hugs and many prayers, Kim Roy wrote: Hi, I am new to the list and am looking forward to hearing about other " like " folks who are living with CFS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 Thanks , yes, I hope they are helpful and I win, I pray I win, I need to win, lol.. Jeanette Re: New Member > Jeanette, > Glad to hear you have some one in your corner. Good luck and God Bless. I > will keep you in my prayers. > Quote Link to comment Share on other sites More sharing options...
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