Thank you for responding Kirsten! I was wondering if there was anyone else with these co-morbid conditions. I am sorry to hear you have 6 lesions. Are they brain or spinal cord? I have been told that it is way harder for women to get a diagnosis in a timely fashion Right now I keep bouncing between afraid and angry. I already have 2 disabling dx's and my inner cry baby just wants to have a temper tantrum because "it's not fair". I know fair has nothing to do with it and being negative helps nothing. I think I have been in denial and struggling to catch up. I do not want to over whelm you with questions, but I hope sometime maybe we could chat.
Kirsten said:
Marie, I have just been dx with MS (RRMs) and started on Copaxone. I was complaining for years. Was told I was over weight, was told it was fibromyalgia, etc. finally saw an MS specialist who ran tests and another MRI. Now have 6 lesions and spreading. Do not rest until you see someone. I also saw a plain 'neurologist' before who told me it was not MS and wouldn't even test for it. Anyway now I have a great MS Dr and while not happy about Ms-I am happy it has a name and things I can do for it. Hang in there
Hi Marie, cant really help but just wanted to send you a hug and here’s hoping you get answers soon, whatever they are. Its horrible waiting in that black hole without so called professionals making you feel like crap x
Marie, 4 lesions are brain and 2 spinal cord. It was hard to get dr’s to listen ( not my Rheumy as he kept saying there is more going on. He wrote letters to help me in my search for a reason.). I hear you loud and clear on the inner child waiting to scream ‘it’s not fair!’ But I allow small moments of that ( or I try to keep them small) so that I can refocus and get back to trying to deal with everything. Definitely we can chat. I think you can email me. I will send you a friend request?
Thanks for the kind words and hug! That is one of the sad parts of any auto immune disease, the dreaded waiting and being made to feel like a wimp/hypochondriac/crazy/exaggerator in the mean time. I have talked to lots of people over the years who have auto immune disorders and no matter the disease the common thread is some doctor made them feel like crap and it took forever to get it figured out. It is wonderful we have internet and able to encourage each. My poor grandma was expelled from school at age 12 for having psoriasis and her mother was told to keep her away from people in town because they was sure she was contagious. Could you imagine the shame and isolation? I try to remind myself it could be much worse.
Louise Hoy said:
Hi Marie, cant really help but just wanted to send you a hug and here's hoping you get answers soon, whatever they are. Its horrible waiting in that black hole without so called professionals making you feel like crap x
Kirsten I have accepted your friend request, thanks! I am having a meniere's attack tonight and had to take meds for that so I am pretty groggy. I fell asleep trying to respond to someone, lol so I think I am going to call it a night. I am excited to be able to talk to you and will be in touch soon!
Kirsten said:
Marie, 4 lesions are brain and 2 spinal cord. It was hard to get dr's to listen ( not my Rheumy as he kept saying there is more going on. He wrote letters to help me in my search for a reason.). I hear you loud and clear on the inner child waiting to scream 'it's not fair!' But I allow small moments of that ( or I try to keep them small) so that I can refocus and get back to trying to deal with everything. Definitely we can chat. I think you can email me. I will send you a friend request?