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After reading your post, I decided to register and reply.
I'm in similar circumstances. Three years ago I was making $50K/year at a career I loved. Now I'm going to food banks, and have to take breaks while folding laundry because my arms are so weak. I lost the company provided disability benefits because none of the many doctors I've seen would give me even a tentative diagnosis, other than my family dr who's known me for more than a decade, and knows I didn't just suddenly become lazy and stupid.
It started in the summer of 07, and my dr sent me in for an MRI. It didn't show any lesions but did show a Chiari I brain malformation and mild cervical stenosis. MS symptoms and those of the stenosis and malformation are VERY similar. The surgeon said the stenosis and malformation didn't qualify for surgery and sent me to a neuroligist to investigate other possible causes. In 07, the neurologist ran quite a few tests, but in the end just said my case needed to be monitored. I explained to both of them that I was REALLY worried about my job performance. I got sympathetic shrugs, and a large medical bill.
By the summer of 08, I was a mess; tremors were much worse, I could barely stay awake at my desk, and thought I was going to get fired. I've always been an overachiever so I was crushed. But the company CEO had an uncle that died from MS so when he heard about the medical problems I was having, and the fact that I tried to take care of it in 07, and got no help from the dr's, he was understanding. His uncle had the same kinds of problems. He told me that the company provided both long term and short term disability benefits for a reason, and that I needed to take it. I cried like a baby!! It's funny I've never been a crier, but the "new" me cries easy and can't stop!
So back to the MRI I went. Same results from the MRI, and the surgeon said once again, no surgery on the stenosis or malformation. The neurologist actually only examined me for about 2 min and then told me I needed to see a shrink. Once again, I cried like a baby. I started babbling about how my life was ruined, and he just gave me a very condenscending "Oh, it's not THAT bad!" Wow, the "old" me would have taken my money back, written a letter to the AMA, and used my "mother" voice to scold him for being incompetent. LOL
After crying for a couple of weeks, my husband convinced me to go to a different neurologist for a 2nd opinion. I didn't want to because I was afraid of being humiliated again, but I eventually did. At first it seemed like she was going to be great, her PA was anyway. But then she called the 1st neurologist to ask about some tests he did in 07, and when she came back in the room, she simply said she agreed with him. That was it, exam over. I was dumbfounded, and cried the entire 70 mile drive home.
Anyway, I lost the disability benefits, and now I'm getting unemployment, which is actually a fraud, because I have to say that I'm "able" to work, haha.
I'm very lucky because I have the support of my husband, my two grown daughters and my family dr. Unfortunately it doesn't seem like you have a good support network, but you can get one in places like this. Make calls to different agencies find the financial help you need to get back to the dr. It's out there. But I know how it is, sometimes picking up the phone and trying to think, is just too much, but if you're having a good day, or even a good five minutes, find a way to get yourself to a competent dr.
A week ago i was diagnosed with a staph infection from all the dang itching, and my dr decided to send me in for another MRI and I went in today (it's been 6 months since the last one) and my dr said if we don't get answers soon, he's going to send me to mayo (no clue how we'll afford that). But I already know that it'll be negative for lesions, and the mayo clinic will probably even tell me that there's nothing at all wrong with me, and that I was just wasting their time. But I'll go anyway, I have to....and so do you....because the alternative is to just give up.
So as you can see, I feel your pain, but most importantly the despair!!! You and me both would love to wake up tomorrow with our lives back, but it's not going to happen. In a better world the medical community would swoop in and fix us, but that's not going to happen either. What we need to do is be our own advocate. Information is our most important weapon. Did you know that the MRI is NOT supposed to be used to diagnois MS, it's only supposed to be used as a tool to support a clinical diagnosis by the neuroloigist. So if you're presenting with MS like symptoms, the lack of lesions doesn't rule MS out. There are other ways they can confirm or reject an MS diagnosis. They can do an LP, or Evoked Potentials, and things like that. But apparently it's a rare neurologist that will go to the trouble, or risk being wrong. It should not be up to us to tell them how to do their job, but our lives depend upon them doing so. If you go to your appointment armed with the knowledge of what he's supposed to do first, and then what he's supposed to do after that, and after that, you'll have the upper hand for a change.
Your children need you to fight for their mother!! When you lay down and rest instead of doing dishes, you're not being lazy or selfish, you're giving your body what it needs, and other than raising your children, taking care of you is the most important job you have right now, even if normally you aren't a "me me me" person, you have to be now. Also, I think you need to give your friends and family information on MS and how difficult it is to diagnois, and how disabling it is. And if they're not going to be there to support you, then they need to get out of your way, because you have a lot to do, and very little energy to do it.
I completely understand you fear of facing another dr that's going to make you feel ridiculous, I keep telling my family dr that I don't want to go to a neurologist, I just want him to handle it, but he says he can't, so now I have an appointment at Univ Of Neb Med center, neurology department, and once again I'm going to risk humiliation at a time in my life when I'm not strong enough to stand it. I know that if I start crying I wont stop, so I'm going to try to take a different strategy. I'm not going to wait for him to ask me about my symptoms, I'm not even going to let him tell me his "opinion" until AFTER I've told him mine. I'm going to have my facts ready, and let him know that I expect him to follow through on every possible test to bring about a definitive diagnosis based on current medical standards, and I'm not going to let him take the easy way out and just dismiss me.......then I'll probably run to the bathroom and cry like a baby!!!
Your children are small, and I know that they can be LOT of work, but they can also give you a LOT of strength. YOU ARE THE ONLY ONE WHO CAN SAVE THEIR MOTHER!! Use your maternal instincts to gather the strength to sort through the muck of medical indifference and get the treatment that you're entitled.
Sorry this was so long.





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