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Old 02-25-2017, 10:51 AM #11
Starznight Starznight is offline
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Sorry a bit of a tangent there, but before it's brought up, that I don't flinch, wince or cry out in pain, and getting the EMG's done where I didn't do that. There is a distinct difference between not flinching or wincing in pain that you feel and simply not wincing or flinching because you honestly don't feel anything. I really don't feel needles piercing my skin, I have to check my feet and hands under a bright light anytime someone breaks glass in the house to see if I have any shards in the skin, because I simply don't feel it. My feet have been bloodied by broken glass, my hands have had glass shards imbedded in them from cleaning up broken glass. I simply don't feel those tiny pricks of pain. Now if I slice my hand on a knife blade I feel that! If one of my kitties gets really frisky and bites me, I feel it, or scratches me, I feel it. But if they're kneeding me with their claws retracted or claws out I really don't feel a difference other than one leaves me with little puncture marks and one doesn't.

And I don't flinch or wince if I slice my hand open on the blade of a knife, nor if I get it imbedded with shards of glass. One because it'll drive up the blood pressure and bleed more, and the other because I simply don't feel it.
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Old 02-25-2017, 03:07 PM #12
nemsmom nemsmom is offline
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All I can say is ow and wow!

I wish I had advise for you, I don't. But just wanted to say I hear your venting and I'm sorry for all you're going through.

I do have to travel at least two hours for my specialists because of where I live and recently switched to one that is about another 20 minutes further away. Honestly, it was completely worth it.

I fully understand what you mean about doctors, if you have one that you like and you can still get to if you travel further, I may be different than you, but I would travel.

A great doctor is so hard to find! I do have to say though that my three newest doctors have really broke the mold. They are all young, and two of them are male, but they are so compassionate and understanding and really tell it like it is. They are also completely on-board with the understanding that once you have one autoimmune disease you are more likely to get a whole list of them. So they do exist, they're just very hard to find. I have definitely had my share of the jerks.

I think your hubby is just so willing to let this doctor put the blinders on him because he wants so badly for it to be true. If he's anything like my husband, than seeing you go through so much misery and not being able to do the things you love absolutely tears him up inside. One of the biggest things to make my husband cry (though he tries to hide it from me) is anything that brings me to tears that he can't fix. Because I'm not like you in my response to pain, I do break down and cry when it gets to be too much. Not necessarily that the pain gets worse, more that I have dealt with a high level for so long that I break down for a little bit.

Hopefully you find the right decision as far as what doctor to go to. I also hope you find a way to make your husband understand the situation.

Best of luck!
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Starznight (02-25-2017)
Old 02-25-2017, 06:10 PM #13
Starznight Starznight is offline
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Thanks for letting me rant some , sometimes I just need to scream it through my finger tips lol. But you do make a good point on the DH and something I strongly suspect as his reasoning for liking the latest. Even if I'm not especially prone at all to breaking down from the pain, he can still tell how much pain I'm in from day to day. I'm sure if he could grab his tool belt and fix me he would... shame he didn't marry a cabinet
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Old 02-25-2017, 08:04 PM #14
bddouglas bddouglas is offline
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Starz,

My heart goes out to you. I, too, had my first pains early in life. I remember my first nerve pain putting me down for hours at the age of 6. UF Health's Dr. Silliman is the MS specialist in the area. I have met him and know one of his patients. He is wonderful, his office staff could use improvement from what I hear.

I am so sorry you are going through having to change physicians. I know that can be traumatic enough to trigger a relapse. I will keep you in my thoughts and prayers.
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Starznight (02-26-2017)
Old 02-26-2017, 10:34 AM #15
Starznight Starznight is offline
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Too bad Silliman is the one I saw. But I might call up UF Health North and see if there's away I can just come in and meet with neuros there. Hopefully without needing to make yet another appointment.
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Old 02-27-2017, 12:14 PM #16
Starznight Starznight is offline
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Okay so I'm in a slightly better mood now that I've seen my PCP. She is sending me for pain management to see about possibly going the surgical route for my muscle relaxants. It was something my pain management doctor had suggested in the past but at the time I was still looking at the risk to benefit and a little leery, especially because you're talking about something going right into your spine. Like a needle going directly into your spinal fluid... and while yeah sure there's a low occurrence of people having terrible side-effects from it. It can lead to complete paralysis, infection of the spinal cord and even the brain because there's that little rent in the blood brain barrier where the needle is.

It'd be like winning the world's worse lottery to have those side-effects, but I've not been that lucky in life that I was quite to the point 6 years ago of saying "yeah sure I'll roll the dice!" Now even though my luck hasn't improved at all in life, at least the symptoms have reached a point of where I don't really care. My current situation really can't be any better than whatever the potential complications can hurt it is, so now I'm ready to be signed up.

I still will have to see a consultant about it, and go through a lumbar puncture as they "try" it and see if directly injecting the muscle relaxants has any added benefit over me taking the pills orally, but it's a much needed and possibly long overdue start to the process. And we'll see from there. I can only hope that getting it directly helps because if not, well.... I suppose there's always botox, but given the sheer number of muscles involved (all of them) I don't think that's truly a viable option, but again at this point, about ready to even say sure where do I sign for consent on that even.

I dunno, just reaching desperation status at this point. But hey when I reached that point with the migraine, they found Imatrex to kinda sort not really all that well, work for me, but it was still an improvement over everything else, including letting the local hospital inject me with benedryl and sending me home with the very nice allergic reaction of tripping (like illegal and illicit drug use kind of tripping, not stumbling) Where I still had the migraine but got to distract myself from the pain by watching Marvin the Martian play with my cat. And the doctor still let me be released from the hospital even though I then insisted his name was Lurch, and kept asking about the rest of the Adamms family, so it's not like they didn't know I was tripping when they sent me home, and let me walk out the front door chasing after a gremlin, shouting out to people "Who fed him after midnight!!! You can't feed Gizmo after midnight! Lurch come help me!" Love the local hospital, and so thankful I didn't go into anaphylaxis after that.
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Old 03-21-2017, 09:25 PM #17
bddouglas bddouglas is offline
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Starz,

Please keep us updated. I hope this is legible, optic neuritis is making look all wonky...lol
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Starznight (03-22-2017)
Old 03-29-2017, 01:52 PM #18
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Almost forgot with all else that is going on, but I met with the pain management doctor who agreed that it was most likely time for the baclofen pump. He was rather shocked at how well I move with just how spastic my muscles are. When he was just doing the initial interview type phase of the exam he was naturally telling me how radical the surgery was... likes to started out with the most minimally invasive treatments, yada yada... then moved into the physical exam and instantly changed his entire tone. As tends to happen most of the time when I see my doctors over the spasms, but my muscles did help me out a little bit more than usual as a few Charlie horses in the toes decided to act up and he got to visually see the toes being contorted by the spasms.

So he got on the phone with my neuro and basically told him in no uncertain terms that the baclofen pump is my next line of treatment since clearly they are far worse than what my records led the pain management doctor to believe. So now I'm just waiting till the can get me in for my trial and pray it will work, though pain doc said even if it doesn't have the "desired" effect that it probably won't prevent them from putting the pump in anyways as they can then play around with any combination of medication to give me relief hopefully and in ways that they just can't do through taking the medications orally. I'm just sooo glad that silliman now seems to understand what I was talking about. So that's a great relief that next time I see him maybe he won't be so much to the patronizing attitude but will actually listen 👂 to what I'm saying and not just fob me off
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