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I Came Back
Hello all. I stopped posting on these boards a year ago. Now, I'm back.
In this post, I wanted to concentrate on myself and tell you what's been going on. Mid 2011, my neurologist here in Salem sent me to an MS specialist in Charlottesville, VA. I went to him twice. At the end of the second visit, he told me that he doesn't think I have MS. I was diagnosed in early 1990. Yet, he couldn't tell me what I had. A few months later, my neuro sent me to another MS spec in North Carolina. This was a three hour drive both ways. He said I have white spots that aren't in the usual places. He also told me that I had had a stroke(that's not been mentioned on any of the MRI's in the past). I was to have MRI scans of my brain and cervical spine, have them copied to a CD or DVD, which I did, and then bring it back for him to see again. So, I had done what he requested. Three hour drive; doctor with us in exam room for maybe 15 minutes; doctor gone. I go back to my neuro and tell him all that had happened. He said that he can't put me back on Tysabri because I had tested positive for the virus and because the two specialists didn't think I have MS. I asked him what I should do. He said I should find my own neurologist. I found a neuro (Dr. Burch) who is supposed to be very good. He has a large patient list and can't see me until late October. I called my neuro here in Salem and was told that Dr. Sherman had forwarded all of my records to Dr. Burch, and that I was no longer his patient. Is that even legal? To leave me without a neurologist. I asked about my Trazodone, which I take for sleep. His nurse said "he may renew it". Well, he did with one refill. I can always get it from my PCP. My PCP, Dr. Leong, told me that he believes I have MS and he won't stop believing until someone proves what I have that's not MS. Bless his heart. Meanwhile, my legs and arms are getting weaker. I have tremors and now twitches. I'm having a terrible time with my memory, becoming almost a danger to myself and others. Monty (my service dog) still helps me when I lose my balance. He's not able to help me off the floor because my legs are too weak. He can get DH Arnie and bring him back to me so that he can help me up off the floor. That's about it. It's good to be back. |
I just can't imagine what you've been through--I've been sitting here for 5 minutes trying to come up appropriate comments, but I guess I'm "speechless". Welcome back. :hug:
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:hug: Maryann :hug:
You've been through the wringer! I hope you can get a definite diagnosis soon. Not that you want to "have" anything.....but it would be nice to know what's causing all the symptoms if it's not MS. |
:hug: we have missed you!
I am so sorry that you are dealing with knuckleheads. I wish they would be more considerate or even compassionate when giving or trying to take away a dx. I mean to simply cut you off, pull your file, and end your relationship without so much as a kiss?? COME ON! This needs to be reported as abandonment of care! Please hang in there. Keep banging on those doors till you get the answers. |
Hi again Mair, it so nice to have you back. I hate the circumstances that bring you back, but you belong here, among friends who understand.
I sure hope your new Neuro will be a bit more thoughty than the jerko before.:rolleyes: I hate it when they start playing the guessing game after you've already been DXed.:mad: Sorry about the TY, was it helping you? If it was I'd maybe try to get back on it. Check into the TY thread...there are some who tested positive for JV and are still doing well on TY. Just watching closely. BTW, have you been tested for PML? Not to scare, but caught early is better. Stay with us. We are all here for each other.:hug: |
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I'm going to do my best. If the next neurologist is as wishy-washy about the MS, then I'll go back to my PCP and ask him to refer me to someone at Duke. Anyway, that's the plan. Yes, the TY was helping me. I plan on writing Dr. Sherman a letter telling him it wasn't right to send my records to Dr. Burch and then refuse to see me anymore. It makes me so angry! Anyway, it's so nice to see all of you again. I feel like I've come home! |
Glad you are back amongst friends who (many of whom) have "been there done that".
Glad your service dog and husband are helping you thru all of this, as well as your PCP. Finding a neuro who will help and listen to you - regardless of whether they can find a quick diagnosis is oftentimes harder than striking oil in your bakyard. Again- glad to here from you again! Welcome back home:hug: |
i can't believe the way some drs treat their pts.
i hope the new dr will help you even tho you have to wait so long. sounds like you have a good pcp tho. that's a plus. |
I too have been told that the lesions "aren't in the right place"...
Then I got some that WERE... Don't give up...I'm on my 4th neuro and am more than satisfied with his treatment. Don't forget to keep a symptom journal...it's difficult to remember what happens when... Glad you've come back for support info & hugs:hug: |
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