Hello to everyone. I have missed my friends here, but am having to limit online time and deal with challenges, new health iissues. Welcome to anyone who has come along during my absence.
For those who research a lot for themselves, I could really use your help with resources. Can anyone share links to sites with studies and other information? I feel a bit dumbed down and not making much progress.
My challenges may or may not be lupus related, and could be due to prior head and spinal injuries. CNS and autonomic nervous system malfunctions concerning heart, blood pressure, seizure type movement disorder, tremor, cognitive in speech and writing, spasm of voluntary muscles, and more.
So many people here are inspiring with the way they handle chronic illness, living with it and not letting it define their whole existence. I've learned by watching how you help yourselves, and what a blessing thae sharing here is to everyone. I'm grateful to be part of this community.
Hi Louise! I am so glad to read your message. I have been praying for you and hoping that you are not just hanging in there but getting better. I guess not. I don't know of any sites for this but you have Ann knowing so much already on the job for you. My prayers and love and gentle hugs coming to you always! Reet
Hi Louise, I often read the posts but I have never posted prior to reading your post. I can identify with what you are going through at the present time. I also have done a lot of research and have found that in the last several months that I have had severe personality changes, head pain, severe muscle spasms and some delusions. All of that to say this after a ct scan and it indicating extensive demyelination and many cerebral lesions I am now going through many more tests. At this time the nuerologist is certain the spasms are due to the lesions whether it be the sle, ms or vasculitis. All I know is that there is hope and I hope your doctor orders a cat scan and rules out exactly what it is. Hang in there my heart and prayers are with you.
I can supply you with some links about lupus and rheumatoid arthritis which on these links there are sites to research plus clinical trials going on that if you meet the criteria you can participate. You also can just do a search for whatever kind of clinical research trial you are specifically interested in.
Medscape is another great source for any new medical articles including those of recent published research.
Link for it would be, medscape.com
You might also try the FDA( fda.gov) it again will have new clinical trials, research and findings on it.
National Institute for Health also is excellent source, http://www.nih.gov is the link for it's site.
You can always go to lupus foundation of America as well. I know they have ongoing clinical research trials plus those coming up and what they are looking for specifically in case you or anyone would like to apply as participate. Their link is lupus.org link for clincial trials is this http://www.lupusfoundation.org/clinicaltrials/
Of course you can do searches just for the things you mention for clinical trials in those areas as well as any articles on past clinical trials and/or research on those topics.
You also might try to find a leading teaching hospital that specializes in the area of most need or top few. I recently just had sick dog and was so surprised how professors at top Vet Colleges were kind enough to just answer my questions. It really helped me knowing that my vet was handling as all of them also would have.
Other thing is you might find a Doctor at one of those colleges who might just have interesting angle at your body and what is going wrong with it. Possibly one that might be willing to work with you that you also find very informative and someone you just feel will enjoy working with in solving your medical issues.
Just remember you can do searches and which can lead you in if not the right direction at least somewhat right and you should find at least one that can soon enough. I wish you good luck on your endeavor and hope you do find some useful information about what you are what you are trying to locate. Good Luck and sincerely hope you find clues how to address your health issues and hopefully a great doctor to work with as well.
Thanks everyone for the support, prayers, hugs, and replies. I'm down with the flu now myself, including bronchitis. That usually means nasty pneumonia isn't far behind. I dread being seen, they will want me in the ER instead of urgent care. I'm unable and unwilling to take vaccinations, always end up with an innoculous case of whatever the shot is for. Not good with autoimmune challenges in the mix. .
lupaslady, I'm sorry to hear of your struggles, please know you are not alone. I'm glad answers are coming, and hopefully best possible treatments.Sometimes the best thing to do is take life moment by moment, do what we are able, and not sweat the rest. Easy to say, harder to live. If we listen to our hearts, and connect with the divine, peace and comfort will come.
Reet, love you too!
Ann A, will watch for your mail. No hurry, but thanks in advance for your expert sharing. love to you as well
siskiyousis, wow, lots to check into. thank you for typing all that out and the help. big (germ free) hugs.