Everything you have written now and in the past seems to be on an extreme side, even for MS. Are you sure you received a correct diagnosis of MS and have you and/or your Neurologists considered something other than MS as a possible cause for what you are going through.

Just my unprofessional observation.

Yeah even I find it extreme looking at how MS presents itself in most cases, whether it's PPMS or RRMS. And then there's the whole age of onset for the muscle spasms which is only narrowed down to under 6, highly unusual for MS to present such an extreme symptom at such a young age. Even if it can, very rarely, present symptoms in childhood. But doctor's also seem to hate giving more than one dx out at a time. And already they have me marked as suffering from hemochromatosis, which while it too can cause muscle spasms and again was dx'd and showing symptoms long before it should have (I was still an infant, 3 months old and had to be taken off the formula with iron, which was kind of unheard of.) but it largely is more of a problem for internal organs than muscles. Plus I do have my iron levels under control so long as I'm very careful about what I eat or drink.

As far as the MS goes, there's no doubt that I have that as well. I have the "appropriate" number of o-bands, lesions in the "right" places and meet the McDonald criteria, if one leaves off the severity of the muscle spasms. I've had EMG's done before getting the MS dx looking for some kind of peripheral nerve damage and there isn't any, although the test itself is abnormal just because I don't show any reaction to the spasms. I mean I largely don't feel them unless there's an injury nearby that they're affecting. I simply don't notice them, anymore than I have any concept of what stretching a muscle is supposed to feel like, I have heard people talk about the pulling sensation, I lack that. I don't feel it at all. It either goes or it stops and won't bend or straighten anymore. I don't feel fatigue in my muscles to tell me I'm over doing something or not. Even when it comes to lifting things, either my hands will hold it or they won't, though I've been able to judge that a little better and have been able to roughly estimate most of my life just what my capacity is for lifting. But I've never really felt my muscles "straining" until they're "strained". If that makes any sense at all to anyone. 50lbs or 500lbs was all the same to me when I was younger before the body fell apart at it's seams, and I simply can't get the arms to hold one or the other.

They've checked my veins, they're all fine, blood work is fine aside from the hemochromatosis which is very well managed, and a little bit low on the vitamin D which is expected with MS. I've had MRI's of my entire back, and aside from breaking due to the muscle spasms, there's nothing, well this latest MRI excluded which the doctor told me was nothing... I've been xray'd on pretty much every part of my body, I've had CT scans from the pelvis to the head. There's nothing there... or at least nothing beyond the usual brain, organ and muscles.

And it is frustrating in the extreme, because like you, I also feel as though there has got to be something else going on. I mean the people who administered all 3 of my EMGs were scratching their heads. The nerves are talking. They are chattering up a storm in what apparently my brain took to be nothing more than a child's tantrum for all it was willing to listen to it. They apologized for hurting me initially and we went back and forth about what they were talking about. They couldn't believe that the skin didn't even flinch when they stuck the probes in. And more than that, that I was able to laugh and carry on a normal conversation like they weren't jabbing me in the middle of a severe spasm that had their machines going crazy. In all the times any of them had administered such tests, their patients were wincing and flinching some even crying. While I was completely ignorant to the spasm, that they could, see, hear and feel to know just how bad it was.

That's not MS, that's not hemochromatosis.... the problem is "What is it????" No doctor yet has been able to figure that out, or even have an inclining so they blame it all on the MS.

Starznight,

I may be confused. Is your neurologist in Brunswick? I have never seen any other neurologist except for Dr. Fernandez, he is awesome.

No I had switched to UF Health to keep all my doctors in the same group, after seeing Trefts in the Southeast healthcare group. She's the one who after getting sent to PT that got all squirrelly she sent the wrong orders and such and it took a year before I got the right orders for PT and then ended up worse than when I started the PT because things tore again and crippled me further, I went from being able to go in there mildly using a cane to my DH and mother had to all but carry me in... suggest I try yoga. Right because trained medical professionals crippled me but a 6 week certificate course yogi has enough experience in the human body to help me.... I was done after that.

So for matters of conveince I went to see Dr. Sanders, I was supposed to see Silliman at first, my PCP (or rather the nurse practitioner I saw and adored Darlene) had recommended him. But his schedule was too full so I got put with Sanders. I was expecting to but I loved Sanders. According to the reviews on her and such she was supposed to be abrupt and have poor bedside manner, I never witnessed any of that, dry sense of humor was about the most of it. But she was quick to help me get an AFO for my left leg even though the foot drop on it isn't that bad but just from the sheer amount of damage to the left ankle, the PT who fitted me for it was shocked that I could even walk on the leg. He looked at the MRI he did all the strength tests on it and such and was just like... how? How can you stand straight and walk without much of a limp at all other than if one looks closely they can see your toes don't leave the floor??? My only answer was that it hurts the back too much to slouch or to hunch over. I was raised with good posture being something my parents and grandparents and even my teachers and coaches wouldn't accept anything but.

And despite the spacisity of my muscles I played a lot of different sports growing up. I skied and did figure skating, I played hockey, baseball, gymnastics (until I physically couldn't because I couldn't gain any more flexibility and was losing more with each passing day rather than regaining or retaining) I went to dance classes, field hockey, soccer, track and field, tennis I mean you name the sport I probably did it. I was taught how to play a variety of different instruments and how to properly type. And for all of the sports, all of the lessons, at my school everything it was center of balance and good posture, beaten into to my head no matter what I was doing.

Even in walking, my grandmother who was a bit on the crazy side (okay she was clinical insane as we found out later in life) would smack us if we didn't walk properly, heel to toe, don't shuffle you're feet! whack!, which at school was the same way only we didn't get whacked for it. We just got told over and over again. If we slouched in our seats the teachers would stick yardsticks down the backs of our uniforms and through our neck ties, so we couldn't slouch. A favored punishment for inattention in class was to stand at the front of the classroom with 2 textbooks on our head keeping them balanced without using our hands and at the end of it, walking back to our seats and sitting without touching the books until after we were seated. If the books fell, it was back to the blackboard and start again. Sounds awful I'm sure to some, but honestly as things got worse over the years after leaving school I was really thankful for it. It has meant less back pain from where I've broken and herniated/bulged disks, because without slouching I'm not placing undue pressure on the injury. My spine can more easily take the brunt of my weight and compensate for the injuries. Slouching does very much so hurt and I don't see how people can do it when they say their backs hurt.

From being taught to pick up my feet and walk properly from a very young age, even before I started kindergarten thanks to crazy granny, I maintain a fairly natural gait even if I can't feel my both legs as happens on occasion and more so when I receive an injury to an ankle or a knee because I don't know how to walk dragging my feet. I only know heel to toe, I only know how to keep my back straight, my weight equally distributed on my hips and to put my heel first and round the to the toe. Not only from verbal reminders and creative punishment by my teachers but also by my grandmother literally beating it into me.

It does bring it's mixed blessings though, because until the doctors look at my MRI reports from over the years, they seem to think yeah sure you're back has that many issues, whatever you say.... Yeah sure you have that many issues in your knees and ankles... uh huh, whatever you say sweetie... And then when I'm able to get them to actually LOOK at the films, they freak out about why I didn't tell them it was this severe and how could I possibly.... Then they want new MRIs of the damaged areas to see if there's been any improvement because of course their had to be! And instead they find more even more damage then the ones taken before. And I get yelled at all over again for why didn't I tell them it was soooo much worse than before?!

Doesn't matter that I did try to tell them that, and they looked at my sitting posture, the way I stand and the way I walk and move and go.... pfffft, you're fine, crybaby. (not in so many words but you know the look doctors give when they think you're making too big of a deal over something.) Even now, yeah my left leg would like nothing more than to be dragged along... Do I let it? NOOOOO, that hurts like a mother************ ****** ********** ******** ****** *********. And frankly my right leg isn't strong enough to do it. And I do still walk all that I can, yes I might use the chair inside the house sometimes just because the whole lower body is saying, mmmm nope you really don't have to get up to pee right now we don't care bladder we ain't movin'. But for the most part I walk around the house still, I'm in pain and frustrated because the left leg just doesn't want to listen to me but I get it done. I use the chair still primarily for when I'm out and about so I don't fall into store shelves and displays when my left leg just goes. I can't feel it, couldn't tell you if my foot is on the floor or not without looking down to "confirm it", but I can still largely tell just by where my COB is so I don't have to look down. My right hip can feel if I'm listing to the right or listing to the left. My spine can feel if I'm out of alignment so to speak, too forward, too backwards, too left, too right. My shoulders, my neck all of them tell me even if the legs can't always that I am where I need to be or not and here's how much it needs adjusting.

I've never even been falling down drunk in my life (I've been passed out on the floor worshipping the porceline goddess quite a time or two in my life, what can I say I'm Irish) but not falling down, no matter how much the world is tilted on it's axis. I've blown out an ear drum and it never affected my 'balance' just the world wouldn't stay put but I could still walk in a straight line even with my eyes closed. It's like I failed out of Staggering 101 when it came to life's lesson.

Thank you very much crazy nanny for beating my body into this, because now no doctor believes me until they have checked all my reflexes and done all the strength tests and have sent me for additional MRI's because I'm such a whiner, without whining at all... until they see HOLY!!!!! And then can't believe I'm not complaining about it more! Sanders was the first doctor, and thus far aside from Darlene, to have that understanding without jumping through all the hoops. To listen to what my complaints were, to look through the previous records and to go okay.... We can see you have good posture... we can see that you stand and sit "like a lady" that you... yeah have a slight gait problem but that it is not trying to affect a proper gait because of recent PT telling you to walk heel to toe but rather the muscles and soft tissues are disrupting what has been natural for you. Maybe it's because they also went to private schools and are also females and older than me. I was at the tail end of the generations where posture and manners was a huge part of curriculum at school, as much as reading, writing and arithmetic.

But they could understand, that you know what, not all females whine and cry excessively about pain, that in life a lot of us are worse than men for ignoring such things and getting done what needs to get done at our own sacrifice. We find the little loopholes that our bodies will allow for and adjust accordingly if it means getting laundry into closets and dressers, or heck even hooking our bras. Something I can do one handed just as quick and about as easily as I could do with both hands at this point. We make it work, because we have to.

My DH, I love the man to death, but he was never taught to clean house, or even pick up after himself. I worked just as many hours as he did and most days in a more physically demanding job, would get home take care of his kids and clean the house including picking up after him. He cooked... honestly the one thing I've never been good at making it work, though my food might be edible his is frankly AWESOME. But that was his contribution, coming home after a hard days work and cooking dinner. I still made the lunches and breakfasts, washed the dishes, did the laundry, scrubbed the floors, dusted, vacuumed, tidied up the toys and chased his clothes up from around the house where he just took them off and left them, and even took out the trash "because he cooked". Equal division of labor never existed in our house though, anymore than my mother has with my father, she works more hours than he does and still has too cook and clean, though she has trained him to do laundry after 44 years of marriage... baby steps.

But I don't know, it seems impossible to find that kind of understanding from a male doctor, and next to impossible to find it from a female doctor if they aren't at least 45 and up in age. And even the male doctors that have sort of a pseudo understanding thanks to their wives I guess, still think I'm overstating the case until they hold the films in their hand and then they can't believe how much I'm able to "understate" the case. One sports medicine doctor I saw hadn't even seen an ankle with as much damage as I have in mine but with just a fraction of the damage his patients couldn't even put their foot down and bear any kind of weight on it without hollering and screaming and carrying on, and said that it wasn't a "girl" thing because neither male nor female patients could do so.

Yet Darlene looked at the same film and shrugged saying yeah, looks like that hurts a lot now doesn't it... okay.... let's see you walk... alright yeah it's causing some problems... but overall yeah you can walk, it can still bear some weight, how's your right leg holding up because you know even though you aren't "limping" you are. Sanders was the same way, they didn't make a big deal over my lack of reaction to massive amounts of pain, or what all I could still accomplish with the damage inside, they understood how I was able to get around, and do things still and that when I said my pain level was at a 10 with a straight face, how I could sit there with a straight face and say it. Not screaming, crying or carrying on, after all what good does any of that do, it drives up the blood pressure, further tightens the muscles as it they coil in a flight or fight response when you scream cry and/or carry on, so it makes the problems worse not better. I might want to scream or cry sometimes from the pain, but I know it's going to make it worse, not better, so why do it? Anytime you wince from pain even, those few seconds of holding your breath drives your muscles to tighten up and if your problem is the muscles are too tight, the last thing you want to do is wince or suck a breath in, that creates more pain! So just roll with it, is what I've learned in 37 years of pain. I might let a few explicitives fly if I stub my toe or if something is just acutely hurting, but that's about the long and short of it.

If I have my crazy grandmother to thank for doctor's not believing till they're seeing, then I have my sailor uncles to thank for giving me an outlet for my pain. I might be able to walk, and sit like a lady, but when the pain gets to be too much I can make a sailor blush over the blue streak of curses coming out of my mouth.

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.

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!

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

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.

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.

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.