Sorry I haven't been here lately. Started back to work and have been BUSY! I am exhausted beyond belief! My neuro is sending me for an evoked potential test at Sacred Heart on Tuesday. I also asked that he send me for another MRI of the brain before the end of the year so I could see if there have been any changes in the lesions. I have lately been having similar symptoms on the left side of my head that I experience on the right side. My doc did warn me that the surgery I went through could possibly cause some more lesions due to the stress. I am still waiting to hear back from my neuro whether or not he will approve the MRI. If I have it before the end of the year, my insurance will cover it because I have already maxed out my out-of-pocket and met my deductible. I am STILL not on any treatment for MS even though my neuro is convinced I have it. I saw my new PCP last week, and he agrees with all of the other docs that it is MS. He did, however, agree to do some further testing to find out if I also have a tick borne infection. I am waiting for those results. I have read that a perisistent infection could possibly trigger MS. I asked him if a person who is supected of having MS takes the MS drugs and then finds out later that they don't have MS, could the meds hurt them. He said they wouldn't, but the side effects are terrible. I told him that my current symptoms are worse than any side effects the meds would cause and why don't they just start me on MS meds until everything is figured out. Every doctorI have seen lately (rheumatologist, infectious disease, two neuros, radiologist who read my MRI, and my two PCPs) believe I have MS, so what are they waiting for??? I'm getting worse.... I'm gonna lose my job if this keeps up. I already had to give up a day of my transcription. I take six-hour naps now. I can't continue to live like this. Any thoughts? Take care everyone. I have missed you all!!! ~Jlynn
Replies
What did your doctor say, when you asked him to put you on the meds? I\'m amazed that you\'re able to work at all, with what you\'re describing. The only thing I know, & it\'s from having had a friend with ms, is that stress definitely makes the symptoms worse. And you\'re under extreme stress, just trying to get a diagnosis. Any idea how much longer you have to do this? It\'s possible that once you finally have an answer, you could start to get better. That is my prayer for you.
Love, Debi
You are a fighter! And---you defend yourself well when it comes to the medical profession.Don\'t despair & don\'t stop pushin for an answer.I know the days are painful,and I am praying you will soon find relief.God bless.
My PCP can\'t put me on the meds, unfortunately. I will meet with my neuro again in January. If the evoked potential test turns out to be abnormal, they will contact me sooner, and I will insist that I get treatment right away and not wait until January. I learned yesterday that my neuro did agree to the second MRI in December. That will tell me if there are new lesions. Thanks so much for all of your support! ~Jlynn
Jlynn,
This comment is rather slow in coming like your doctors; one month to be exact.
I have found that Cymbalta helps the severity of my TN but it does not take all the pain away. I think that I have mentioned this before to you. Chances are that having TN you do have MS. There are many types of meds to slow the progression; I take a shot of Copazone every day. The thing about these meds is you never realy know for sure if they are working. I still lost the sight in my right eye even though I had been taking the Copaxone for two years. This irritates me for reasons I am sure you understand.
It sound like your doctors are moving rather slowly. The sooner you get on a preventitive med for MS the better which is an obvious statement.
I hope things move a little faster for you Jlynn.
Take care.
Mike