I already get a little upset just in thinking of switching doctors especially after finding one that I like and that I can communicate openly with and really discuss my health without in a placating or the "I'm the one that went to medical school" kind of way. But a doctor who recognizes that I am an intelligent being capable of understanding at least as far as my own body goes the science behind many drugs, treatment and diseases. I want the truth even if it means a doctor has to be open and honest in saying they just don't know or can't say. I'm fine, one hundred percent perfectly okay with that.

What I am not okay with is my newest neurologist who took over for mine that left. He basically blew off all of my questions concerning my latest relapse and some abnormalities found in my T1 and T2. Telling me everything was perfectly fine... really then why are they showing up on the MRI you're showing me and why are they in the report by the radiologist. And okay he could have said that it was normal to have a beign tumor in the T2 given my age or skin tone and that it wasn't infringing on things so shouldn't be a reason for my newest symptoms despite it not being there the last time they looked at my thoratic spine. He also could have said the white matter in my T1 is just a normal age related thing, and not a sign of an MS relapse and also shouldn't be causing me any problems.

But he didn't, he completely glossed over the questions concerning those two points with "well it all looks good, no signs of anything but of course our diagnositics are only as good as the machines themselves...." Right the machines that are showing two potentially concerning abnormalities that you aren't addressing in the slightest. Okay, number 1 failing, ignoring the questions I ask and glossing over them, does not make me a happy camper and worse still giving me a "placate" like I don't have eyes in my head or the capacity to read does not make me a happy camper but fine, I... against my better judgement did not simply stand up and walk out of the room.

The next real winner was him telling me and my husband that he didn't think I would have any more relapses to worry about, just take my copaxone on a regular basis and I should be good till I'm 90. Okay I have been largely stable, and the copaxone is possibly to thank for that, but I had a relapse one month ago and now he thinks I can go 53 years without ever having another one??? Does he not realize it's a degenerative disease? Who tells a patient with a degenerative disease something like that? Worse still who tells their husband that????

But wait it gets better.... now for the past month and a half since I landed myself in the hospital I have been brutalizing my arm and leg to the point of excrutiating pain that will make me black out if I give myself over to it. I mean if I stop for even a moment to think about it I break out in a cold sweat, turn deathly pale, shake uncontrollably, ears start ringing and darkness starts closing in. Even as I'm typing this it's becoming difficult to do so because I'm starting to breakout in a cold sweat, my ears are ringing, my skin is clammy... I need to focus on something else for a moment be back in a bit before I hit the floor

Okay so where was I? Okay so what he told my husband and I was that by June it should be like the whole thing never even happened. No relapse at all, I'll be perfectly fine. Sure right now I only have control over my body through extreme pain and force of will, but I'll take two aspirin and be right as rain in no time... And in the mean time we'll completely ignore all the more minor relapses I've had that haven't improved since before or after my dx.... I'm in perfect tip top health according to this new doctor and completely losing strength and control in the left side of my body is just I guess it's way of taking a 6 month vacation and absolutely not the least bit of care or concern should be given to it.

Now as you can imagine my DH loves this new neuro and thinks I should have seen them from the start... didn't I hear him? I'm simply over reacting to excruitating pain and losing the use of half my body. I'll be perfectly fine in a couple of months and can go back to running marathons like when I was 23, and hiking and jogging, and wrangling horses. I'll be cured in 6 months... is pretty much all he heard from that conversation.

Yeah so that's really helping with my stress levels as my husband is at an all time high since I got the first suspicion that I might have MS. And this past week after seeing the new neuro he's been asking me every day if I'm feeling better yet? How do I feel about taking a vacation this September, go down to Disney, I might not even need to worry about the wheelchair or a handicap accessible room, just go down there and wander around like I used to.. or we could check out Universal studios we've never been there? How about calling up my aunt and maybe plan a vacation this winter since he knows how much I miss ice skating and skiing but after June I'll be able to do all of that again. Sure I'm in so much pain that I'm having trouble sleeping but I just got to hang in there a few more months and I'll be fine..... Just keep taking the copaxone like the doctor said and I'll be cured!

Because of course everyone knows that copaxone is a CURE for MS. (anyone new to the boards reading this let me just say the above statement is sarcasm and copaxone, tecfridra and other such treatments are NOT, I repeat NOT a cure for MS, as of the writing of this there does not presently exist a CURE for MS only medications and treatments designed to stabilize and repress relapses, and/or reduce inflammation which may result in greater damage if left untreated when a relapse occurs).

Which brings me to my next final complaint with the new neuro. Now I should have asked this of my old neuro but had my latest relapse not mimicked a stroke so well that had me rushing to the ER, then like all the ones before I would not have bothered going. As far as I was aware the only treatment for a relapse was steroids and I'm allergic to them. So I asked him in the event of something similar occurring again, but not imitating a severe medical problem which requires immediate attention, should I go to the ER or just suffer through it at home as I have in the past. Or is there something other than steroids that can be given to make it worthwhile for me to go. Because when I went down to the ER with the relapse they basically kept me for a day and because I couldn't have steroids they sent me on my way after messing up my medications and spending almost 2 days missing meals because they kept sending me for tests every time meal time came around.

His answer was exceptionally vague. Apparently yes there were alternatives that the doctors could have given me. But according to the new neuro it's not like I need to worry about it because I shouldn't have another relapse. But if I really wanted to know there were some proteins they could have injected me, and also some kind of injection they could have given me to stimulate my adrenaline glands into producing my own cortisone, but according to him I would never have to worry about it. But if it would make me feel better he'd put a note in my chart about me not being able to have steroids (like the note that is already there and has been there, and that I tell doctors and my family tells doctors anytime the word steroid, cortisone or corticol(fill in the blank) gets mentioned... that note, is what he'll make???) And again is only making to placate me, if I makes me "feel better". Yeah, cuz of course who wouldn't love their body to force them into the fetal position, have spasms so severe that every single joint become bruised from the pressure while their jaw is too locked up to scream for the pain their in as they fade in and out of consciousness for roughly 12 hours... but if it'll make me feel better he'll leave a note in my chart not to put me through all that.

Now before my old neuro left, we had changed up a bunch of my meds. Taking me down from 5 different muscle relaxants a day that were proving to be ineffective to 1 muscle relaxant a day, which proved to be equally ineffective but at least provided a mimcry version of the placebo effect. Though I know it's not nearly strong enough to control the spasms at least it was better than shelling out $300.00 a month in medication to still get pretty much zero effect, but it also left me with something that I could sort of trick myself into believing was at least better than nothing at all.

That was all fine until the latest relapse that in addition to stealing the left half of my body, has also expediential increased the spasisty. I went for a pap smear and broke the duckbill from a muscle spasm. Our family doctor is slightly curious as to how long it will take for my husband to come in with a "broken" or more accurately a severely bruised piece of cartilage after that whole incident. So the new neuro, gave me a look when I asked about what could be done to better control the muscle spasms, like I was being overly dramatic about the problem, like spasms aren't and couldn't possibly be so severe as to tear away at more than half the soft tissues inside my body. That couldn't be what's going on...

But again if it will make me feel better, I could double the dosage on my current muscle relaxant. After all he wouldn't want to make me into a zombie by giving me something really strong like clozapine. Told him I had already taken that one, it made me hyper and didn't control the spasms... Or something like Soma, told him I had taken that as well and again it made me hyper and didn't control the spasms. Well valium could be given but it's really strong and.... they gave me valium in the hospital and still it didn't control the spasms, or make me into a zombie, they had to restrain me to get their images. And he just gave me a smirk like I was full of it and told me to just try taking 2 of my pills rather than one I should be fine...

Well for the past week I've been taking 2 instead of 1, and guess what... not fine... not fine in the slightest.... spasms are still uncontrolled. But hey at least I'm not a zombie I guess. Just a hyper spaz, who can't bounce off the walls because I only have 1 good limb and it's my non-dominate right arm, which is not even totally accurate because the spasms have been pretty bad in it as well, but at least unlike the rest of me it doesn't seem as though they have torn anything just yet, not for lack of trying if the muscles jumping under the skin are anything to go by and the pain in the arm, but as yet, I don't think they've managed to really do any kind of permanent damage, but as the right arm has to take over more and more for the basically useless left arm, it's getting to be stronger and the strength in it is leading to more severe spasms.

And if the new neuro hadn't been so busy in telling me just how right as rain I was going to feel in a few months, but actually listened to me and my concerns and answered my questions in the same manner with which they had been asked, I would probably be setting up an appointment to see a pain management specialist to suss out what could be done for the spasms, which at this point are becoming severe enough that I'd be willing to risk the potential side effects of getting one of those internal medication pumps. Or at least going in for the consult and spinal infusion to see if it would even help me some. It is long since past time to find alternative to simply taking stronger and stronger doses of oral medication. That at one point I had to seriously pay attention to exactly what pill I took and when because if I took the wrong pill at the wrong time I could slip into a coma and still had uncontrolled spasms. That to me is a problem, and I have dealt with spasitic muscles the majority of my life if not in its entirety. It is long since time to do something about them, not smirk at me and give me a pat on the head like I'm some hysterical little girl who has a whittle boo-boo.

Have I mentioned how much I despise needing to find new doctors????

In any event, I go this Monday to see my family practitioner to go over some blood work and no doubt she'll want to put me on statins because my triglyerides are high, but of course they're high because I can't do any kind of exercise, and at this current point in time I do not feel as though the risk to benefit from taking them is something I'm willing to do. But since the neuro just wanted to placate me. I'm going to get a referral from the PCP to pain management or something, to find out about getting the spasms under "control". If they can be controlled, I can force my near useless body to exercise enough to lower my cholesterol levels, without setting myself up for an extreme tearing to a tendon or ligament in my body that will lay me up for a couple of months.

It's like the one thing I have been asking doctors for help with for the past 12+ years is the one thing they have yet to address effectively. And frankly I'm tired of it. And if the answer happens to be there's simply no viable treatment to control them, well so be it. But don't just keep upping dose on medication that's doing nothing! Or tell me how they could give me something stronger but it might make me into a drooling ape... Especially when I've already taken that "stronger" medication and no, no drooling ape here just hyper-active person whose still suffering severely from spasms.

I have tendons sticking out of my ankles like little bones from where the sheath covering them has been stripped away and balled up on itself until it is protruding from the ankle. It looks like I broke the darn thing in five different places. And trust me it doesn't just "look" painful, it very much so IS painful. The same with my knees, and my left elbow and left wrist. And yeah such if I want it to "look" better and feel slightly better, I could take a soft blow hammer and give them a good whack to break down the balled up sheathing and remove the pressure to the nerves that it's currently causing. Old fashion cure, whack the crap out of it. The body will take care of the wasted sheath after you break it up enough, or over time it will also dissolve it. I'm going for the overtime because while I do have an extremely high tolerance for pain, smacking myself on purpose with a hammer seems a bit beyond my current sensibilities.

Don't worry I still might go to such extremes if it means the pain will reduce slightly. Might even try it on my toes to see if I can't straighten them out as they now seem to be perma-curled. If whacking excess sheath lining takes care of pain, maybe whacking and breaking some toes will unlock the muscles holding them curled. I mean why bother with medication if you have a hammer available. Just whack away all that ails you right?

See now that is being a hysterical little girl with a whittle boo-boo whose making it a bigger deal than it needs to be. Obviously one should not take a hammer and quite literally beat their muscles into submission. But we'll see what the PCP has to say about me going to pain management and trying out the medication pump thing.

Sorry for the rant, but I really had to get that all off my chest as I now try and weigh the options of finding a different neurologist or keeping with the same ID 10 T that my husband seems to love since I'll be cured in 6 months under his care and live to be 90 (let alone the fact that majority of my family members have all died in their 80's without any major medical histories).

I'm just frustrated being half blind, my peripheral vision is shot once more, my eyes are still seeing everything in triplicate, half my body can't decide if it wants to be in massive amounts of pain or numb or both, and the other half just wants to be in pain. I have things poking out of places that shouldn't be poking out. And despite being a college graduate with multiple degrees as well as 37 years of age I have a neuro who is talking to me like I'm a 3 year old who is just being overly dramatic about a whittle bit of pain.

I hate that you are having to go through this and have been for years and years.

I can't even get my mind around what your body and mind must have to go through everyday but I can understand the DH response to your 'new' doctor.

When I was first dx'd (prior to any tests) with SFN by my awesome APRN she said "File for SSDI and go home and take care of those grandkids and enjoy yourself".......yea right !!!! Oh so Wrong !!!!

Boy was my husband excited......wife home and he could start a side business with me as his office manager or whatever.

Of course no one seemed to Understand the pain I was in. I could barely walk much less have enough mind left after the pain to manage anything.

I do have to say he finally came around to understanding how serious my problem was when my skin punch biopsy basically said: No A or C fibers left, dx Severe Small Fiber Neuropathy and I was awarded SSDI which is one of the hardest things I've ever been through with the pain I was in at the time.

Enough of that.

Having to change doctors or even seeing a new specialist is a horribly scary event to me. Most have been like your newest one........everything's ok on your tests, here take this go home and you'll be fine.

I wish I could be more helpful but wanted you to know I HEAR YOU !

Debi from Georgia

So it is a lesion on tumor on the Thoracic spine.

What is your newest symptoms?

What are the potentially concerning abnormalities you are referring to?

How are you brutalizing your arm and leg?

The newest symptoms came with my last "relapse" which is loss of feeling and weakness on my left side. My leg and my arm both would be perfectly content to be dragged along entirely by the right side of my body. Since that doesn't really work for me especially being a lefty... 3 times a day every single day, I pull out the resistant bands and I start working out the leg and arm, I force my hand to hold a pencil (granted one of those fat ones), to write (however horrible it is), to grasp things, I feel things with my right hand then go over them with the left and try to force the sensation of whatever my right side is feeling for the left side to "feel".

The muscles are extremely spastic, and throughout stretching and strengthening them there is very little "control" over them as they shake and bounce and the ankle loves to slip sideways and the wrist loves to do the same. It is painful, makes me want to scream though how much of that is from pain and how much of that is from frustration over losing the dominate side of my body, I don't know. But it's certainly painful and as yet has shown no improvement aside from being able to feel pain. So I'm not sure what else you would call it aside from brutalizing it. If it showed any other signs of improvement I'd call it exercising them, but no, the muscles still refuse to work, to heed my will.

But there were 2 points of concern in the radiologist report on my thoratic spine. One was a beign tumor, the other was the appearance of white matter and neither had been reported on the MRI I had of the thoratic spine a year ago. So they're new (or possibly the MRI got a slightly different slice on things) Or another possibility is that they might have been overlooked on the previous MRI, which is somewhat doubtful as I've poured over it with a fine tooth comb. There's no telling because the doctor himself wouldn't even discuss them. But there's a vertebral body hemangioma (aka beign tumor they appear on the skin as birth marks, moles and freckles), and the white matter. White matter could mean lesion, it could mean age for all I know as there's a certain amount of white matter that does appear with age and is perfectly normal. But I couldn't look at it and he refused to "clarify".

The hemangioma might be nothing at all to worry about if it's not infringing on anything it shouldn't be causing my latest symptoms. It could be the thoratic spine is perfectly fine and everything is within normal limits for my age. That is a possibility. But what I don't like is a doctor saying there's nothing, when a report is saying there's something. Explain it! Take the minute to say, okay... this is nothing to worry about beccccause.... Not that I'm especially worried about the whys and wherefores of my body's present mutiny, well unless it's being caused by the tumor in which case cut the darn thing out and fingers crossed the symptoms go away. I kind of care if it's something that could potentially be corrected.

But for the love of all that is holy, do not simply waste my time patronizing and placating me. If I'm asking a serious question, I expect a serious answer, not a pat on the head like I'm some kind of child or worse some hysterical idiot who thinks they know everything because they read an article on WebMD. Which isn't to say I've never used WebMD, but it's hardly the first nor the last place that I look up health information, but it can be an okay thing to change things into layman's terms when speaking to my husband or my step-daughter about something medically relavant.

And it's rather sad that right now, I truly regret not getting a copy of the films myself, maybe after looking at them I wouldn't have even questioned the doctor about it. Who knows, but it's pretty sad that I'm seriously comtemplating a 45 minutes drive to get a copy of my films before I decide if I'm going to just put up with this doctor or try again to find another one. Or just hang it all and drive 2.5 hours to follow my old neurologist to her new practice.

At least the good news in all of this is it's doubtful that I'll have another relapse in the next 6 months until it's time to see a neurologist again, so I have plenty of time to decide on what my solution will be. 45 minute drive to retrieve some films and just letting the DH and doctor hash it out as I go on with my life in whatever state it may be in, find a new neuro or follow the old neuro or some combination thereof. After all I've dealt with spastic muscles since at least age 6 when damage began to show who knows how long before that, while it's gotten worse over time for the damage and havoc it wrecks on my body, the same disorder/disease in the muscle function remains as it has been. So let it rip me asunder, it's just pain... I've been an insomniac my entire life including infancy so what's a few more sleepless nights over pain and spasms. And so what if half my body is on vacation, it's not like I need to work to support myself so I might as well use the otherwise useless half to keep the bed warm so the DH has a nice warm place to go to sleep at night, just have to make sure I roll over when he gets into bed so I don't beat him half to death in his sleep as my left side moves about with a mind of it's own.

It's all good Or as my uncle loved to say "It will be what it will be and that's all that it will be." So for now, I guess I'll just roll with it. If anything gets better "hooray" if anything gets worse I'll get another MRI and go from there, and if everything stays as it is for a time.... oh well, the DSD causes me enough stress that there's no point in borrowing any more trouble from my own body. I waste it on the next generation.

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.