Author Topic: Here we go again... saw the doc today  (Read 3745 times)


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Here we go again... saw the doc today
« on: May 10, 2008, 04:20:39 PM »
I went to my endo today. I've been in a nasty flare since the loss of my job, and it's worse than ever. My brain just has constant static, I've fallen again, and my lymph nodes are really swelled again even under my arms. They are so tender that they hurt without touching them. He's never seen me in a "full blown flare". I went in prepared to ask for steroids, because I just can't take this anymore. He said "This looks like MS. Let's just call this MS, and treat it like MS because you had an abnormal spect brain scan, and protein in your CSF." I was a little floored. I had a primary doc when I first got sick that was SURE it was MS. When the MRI came back negative, and there were no bands in my CSF, he said I needed to see a shrink, and that was the end of that.

When I saw a neurologist in another city, she did say that sometimes lesions aren't big enough or there aren't enough for them to mention. She said they could re-check for MS in a couple of years. Since then things have gotten progressively worse, but I thought it was from the encephalopathy. When I recently saw a new neurologist that my endo sent me to (they are friends) the neurologist was suprised that some of my reflexes were 'wrong' and had concerns about the coordination problems with my left hand and right foot. He asked about MS, too, but didn't make any big deal about it. He did want an MRI of my brain, but it got put off since my insurance was ending.

I'm seeing the neuro again on the 14th. I'm having MRI's of my back and brain before I go to see either of those docs. I was also running a temp. today, and the endo isn't sure where it's coming from, but thinks that it could be infection in my back. The last MRI in Dec. was suspicious for infection, but that doc didn't tell me that. The endo put me on a month of steriods to get me out of the flare... said that was the treatment to stop an MS flare also, and said that the infection should get worse during that time so we can find it. I don't have any symptoms of infection anywhere, just increased back pain for the last few months. I'm really grateful that he put me on the steroids, as I am feeling really miserable with this. Every time I have a bad long flare, something else is permenantly changed neurologically. He also put that in my medical records, which may help with the disability claim.

He also said that I need to be on IgG, because I was on it as an infant, and says you don't just outgrow that. I was sick with bronchitis when they drew labs for it months ago, and he says it's boarderline low, and he expected it would be higher, especially if I had an infection. He's going to call my primary to order that, because he said it can be done with a subcutaneous injection now. I'm happy about that, too... because I'm always coming down with sinus infections, bronchitis, and my ear is chronically infected. I never have a white count no matter how infected something is, and I almost never run a fever. When I do, it comes and goes.

The VERY best thing that happened today was that I got my first temp. medicaid card in the mail... and it picked up all the copays for my meds! So the sleeping pill that normally costs me $55 was zero! In total, the cost of my pills was $20. For some reason, the steroids kept getting rejected. They think it's because it's such a high dose. I also found out it covers dentures and partials!! Talk about luck! I have ONE molar left in my head, and that's one with a temp. crown on it. I have a couple others in the front on the bottom that have very little enamal left. Eating has been a real challange. I've never had good teeth, but in my adult years, it's been really bad. So I'm very excited about the possibility of having the ability to eat sweets and things that need to be chewed again! I also saw the sleep clinic doc today, and in a week I'll have the overnight study done. I think it's the 21st or something like that when I see the doc again, and he can decide what he wants to do. They also take medicaid, so I shouldn't have to pay anything for any equipment that I need. I know that my oxygen level drops at night from being in the hospital, and I'm wondering what kind of difference would be made by it not dropping.

I am a little hesitant about the endo saying 'let's call it MS and treat it as MS, since it looks that way, and you've had abnormal tests that can support the diagnosis' though. I already went down that road, and when they couldn't prove it, that's when the docs started treating me like a mental case. I thought that the spect scan was just to diagnose the Hashimotos encephalopathy that he said it was, but I guess it can show more than that? Either way I'm glad for the steroids, just wondering if anyone else has had this happen.



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Re: Here we go again... saw the doc today
« Reply #1 on: May 10, 2008, 05:06:12 PM »
WOW.  You had some day!!  What are they treating you with?  Yes, a high dose probably will need a preapproval.  It is nice what  Medicaid will pay for.  I hope they are helping you.


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Re: Here we go again... saw the doc today
« Reply #2 on: May 10, 2008, 05:26:28 PM »
Treating with high dose steroids right now, he wants to add subcutaneous IgG.


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Re: Here we go again... saw the doc today
« Reply #3 on: May 10, 2008, 10:07:42 PM »
Jag, Boy, you really have a lot on your plate. I am wondering what they will find with another MRI of the brain. You need to remind them that people can have sjogrens with MS and that sjogrens can mimic MS. Those swollen glands sure sound like either infection or sjogrens symptoms.The lesions seen on MRI can be similar. The spinal tap with the protein in it probably makes more sense of a diagnosis.

I am glad that you are going to get back on the IgG injections. It sounds as though you have a IgG subclass 1 and 3 problem. I have a similar problem and get all those infections. It may be that when you get back on the IgG you will get over the fevers although sometimes autoimmune issues can cause some fever. I am like you and seldom, if ever, raise a temp and have had to argue with docs over the years about this.

Hopefully the prednisone will help you feel better so that things aren't so overwhelming. I am glad that you are getting some help with your financial issues. It is a good thing that you are not working now as you surely couldn't with this big flare. Take care and keep us posted on how you are doing. Irish ;D


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Re: Here we go again... saw the doc today
« Reply #4 on: May 11, 2008, 07:23:49 AM »
Thanks for the advice! Yes, I've had to argue with every primary over having infections with no temp, and no white count. It's always an uphill battle. I get nasty bronchitis, and it comes on fast and gets bad fast. I had a new doc last Nov. when I got it, and at first she put me on a whimpy antibiotic, not believing I guess that it was infection. Within 2 days I was back, couldn't breathe. The inflammation was horrible, was barely moving air. Ended up on a couple weeks of steroids and major antibiotics. Ended up with thrush, also. She said she'd never seen someone get so sick so fast with no temp.
The last time it happened, she started off with a neb tx, inhaled and oral steroids, and a heavy duty antibiotic. She said she knew now not to mess with it!  :D