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    Old 05-19-2005, 02:07 PM   #1
    tkgoodspirit
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    Thumbs down Raspberries for my Neurologist! Boo Hissssss!

    Hi ya'll,

    I know that some of you have been waiting for me to report back about my appt with my new first ever Neurologist.

    Well, #$&*%@##$%&*!!!!!! Is what I have to say!

    Let me tell you how my day of hope turned into a day of devastation.

    I got there and was lead back to "the room". Liking the nurse, the staff seemed nice, yada yada yada. Okay, enter the doctor. Nice enough, handsome, a little older than me.....

    First thing out of his mouth "Why are you here?" I was like, "ah, don't YOU know?" I proceeded to tell him about a new MRI on my lower back, MRI of my brain because Rheumy suspects MS, Chronic Epstein-Barr Virus, CFIDS, FM, Bursits, etc! He said "No No No" No MRI's, he said that my Rheumy can do those there at her clinic cuz they have an MRI facility on site. I said, "what about a new MRI on my lower back to determine surgery possibilities?" He again said "No". I told him that the MRI on my back was 3 years old and I needed a new one. He again made reference to the fact that all that could be done at my Rheumies facility and that SHE was to order the MRI's for back and brain.

    He then said, your records indicate trouble with your right leg function. I said, "yes, my right leg doesn't seem to work, and I've been told by two different docs that they suspect possible nerve damage because of the herniated discs and spinal stenosis in my lower back."

    Okay, we finally found something we agreed on! He did a number of tests as far as watching my walk down the hall using my cane, then he had me do the hand to nose test. Where they have you hold out your arms infront of you with your fingers spread open, eyes closed and then he had me touch my nose. Well, I did okay with the left hand, coming close and once actually hitting my nose. But when I did my right hand, OMG! I missed my nose entirely. It was like I had no earthly idea where my nose was! I kept repeating it as he told me and I would always end up hitting my mouth or my chin, never my nose. Okay, what does THAT mean? He didn't say. Then he tested my grasp, not so good. Then he moved to my reflexes with that wretched hammer! He would knock that thing on my knees which as you know, causes your leg to kick out. My left leg kicked out a lot, my right leg kicked out, but not as far as my left. Thing is, he KEPT doing it and after a few times, it becomes rather annoying! I finally told him to "quit that!" He used the hammer on the back of my ankle and got virtually no response from my right ankle. Then he held down my right foot, as I sat there with my legs dangling off the side of the table, and he told me to push his hand up with my foot. Well, I couldn't. I just could not push his hand up! I can raise my foot up a little without resistance, but when he applied resistance it was like my foot turned to mush. He also did the "tickle thing" where he rubs an instrument across the bottom of your feet to see if you react. Of course my left foot pulled back, but I didn't hardly notice the sensation on the bottom of my right foot. I could tell something was touching the bottom of my right foot, but it didn't pull away. He then compared my muscle mass in my calves against each other. The same.

    He also checked my heart. I have had a heart murmur since I was very young. First learning of it during my physical when I joined the Army. It's only given me a slight bit of trouble since I've been eighteen. I have always had to take 8 anti-biotics before any dental procedure, and I have had an ultrasound done probably 7 years ago. All showing a "functional murmur". I did have one doc tell me, years ago when my son was little, that one of my valves stays open a little longer than it's supposed to, so it regurgetates (spits) blood out before it closes, which an normal valve usually closes in time to keep the blood that is pumped through the heart IN the heart. This is why I have to take all the anti-biotics. It also causes my heart to make a "clicking" sound. I have experienced heart fluttering/palps seems like FOREVER. They usually get worse when I'm sick or flaring. Sometimes my heart flutters so badly, it takes my breath away and I have to stop and sit there and wait for the "episode" to pass. It is almost as though my heart "stops" beating, and starts "fluttering" and then goes back to it's normal "thump thump". But sometimes those "flutters" as I get older seem to last longer and longer. Kinda freaky.

    This Neurologist explained to me that certain heart murmurs can be heard in the neck. I never knew that! Hmmmm....And he said what he heard in my neck sounded "different" and it sounded "weak". So he ordered an Ultrasound of my heart, just to check it out. Okay. I don't believe it will turn out to show anything significant. I was a runner for 10 years, lifted weights, climbed mountains for heaven's sake, but with the current dx of EBV, and having E-Coli last year, could have caused my heart to possibly weaken. Just a thought on my part.

    Okay, proceeding onward....this doctor orders an EMG to test the nerves in my right leg and find out where exactly which nerve or nerves are causing the loss of function. Well, DUH! Ya think my herniated discs pooching out on my spinal column MAY be the cause?

    Then I asked him about surgery on my back to fix the nerve damage. He out and out said "No, it won't help." I said, "You can't fix the discs?" He said, that since this has been going on with my leg for about one year now, there is nothing that can be done to repair the nerve damage!

    Well, THAT is NOT what I wanted to hear, nor EXPECTED to hear! I said to him "So I have to live like THIS for the rest of my life?" He just shrugged his shoulders. I was MORTIFIED! I kept thinking, "can't they just go in and fix those discs so they aren't pressuring my spine?" I guess since the nerve damaged is in my spinal column, or near it, and it's damaged, fixing the disc will not help it.

    I got home, I didn't go by the Medical Center to get my records afterall, I was in so much pain from the stress of that appt. I just wanted to go home. When I got home, I called my Rheumy's office and left them a message asking what the heck I went over there for? That the man didn't even know WHY I was there. And I asked them, why have I been told all this MRI crap when he had no intention on ordering any MRI's. I was told I'd have the MRI's done then I'd be going to see a Neurosurgeon. What's up with that? Then I heard words like MS, MRI of the brain, yada yada yada. I had told my Rheumy about my recent symptoms of blurred vision, loss of balance, tingling and numbing sensations in my right leg and on the right side of my face. That is when the Rhuemy's nurse called me back and mentioned words like MS and getting an MRI of the brain. Okay, I'm with it. Let's take a look and see if there's anything to it. My Rheumy also indicated that my lower back injury had indeed worsened and a new MRI was needed to see about possible surgical options. So I'm thinking, "okay, we'll finally see how bad my lower back has gotten and let's get it fixed so I can get some kind of relief" I never expected that surgery would "fix" my back, but I was totally sure that I would experience some relief, even if only 10%. I also had been told that the nerve damage caused from my discs is an indicator that surgery would probably not help my pain. I was NEVER told that surgery was NOT an option.
    I was so mad at my Rheumy. Why didn't SHE order the MRI's? There is an MRI machine RIGHT THERE! I still want someone to look at my lower back and confirm without a doubt that there is no way surgery will make a difference. I want to SEE it! I want someone to show me exactly where the problem is and WHY it can't be operated on!

    I then called my Pain Management doc's office and left a message for his nurse, who I know pretty well. Well, she called me back and I spoke with her and told her what this Neurosurgeon said about no surgery. I asked her, is this true? Would my PM doc agree? Would HE give up that easily? I said "Ashley, I want you to tell me, cuz I know you've been around this stuff for a long time, and you've been my doc's nurse for a long time, is it true? Am I going to have to live like this, with this pain, with those discs in my back herniated and torn, for the rest of my life?" She sat there for a few seconds, I could tell she didn't want to answer me. Then quietly she said "Yes, probably." I said, jokingly, "well YOU just made my day." I laughed though and said "You know Ashley, this is mostly my fault. I should have had it fixed three years ago, when I was firt dx'd." I told her I'd see her soon and that I'd talk to the PA about all this when I came in for my appt in a couple weeks. See, at my PM clinic because of the new DEA regs, our appts are rotated between the doc and his PA. One month you see the doc, next month you see the PA. I'm sure you all know who PA's are, they are almost docs, but not really! LOL They can write scripts, and they can treat you, but I think any dx's are left to the doc. So, it won't be until June that I can personally speak to my PM doc. I want to hear what he has to say. He's a fighter. He may not give up on me and he may believe I can still have surgery. Hopefully, we'll see, but not for awhile! Waiting waiting waiting!

    CONTINUED: sorry

     
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    Old 05-19-2005, 02:08 PM   #2
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    Re: Raspberries for my Neurologist! Boo Hissssss!

    CONTINUED FROM POST #1

    So, June 1st I go for the ultrasound on my heart and the EMG in one day. They are done at the same facility, so no biggie. Better actually since all of my docs are between 30 and 50 miles away from my house and I hate driving in city traffic!

    Now, I want to find out about the MRI on my brain for possible MS. My Rheumy's office called this morning and they were still not GETTING IT! The woman on the phone said I had to wait for my tests to come back before any thing would be considered. I was like, "what tests?" I asked yesterday if my blood tests for Lupus and my bone scan had come back and the woman told me she thought they had. Well, it's been two weeks, and if they haven't come back, I would hope my Rheumy's office would be calling to look for them! I see her next Monday and there is no reason to go unless those tests are back. I also asked the woman today, "what about all this talk about an MRI on my brain and all this talk of MS? I was under the impression that my Rheumy wanted that looked into".

    I sat here last night wondering about MS and reading the MS board, and reading that for some folks with MS, it took years to be dx'd. My GOD they can begin to treat it early if they catch it early! Why don't docs listen to us. I know they rely heavily on the results of the MRI of the brain, but I read so many stories about how most people who were eventually dx'd with MS had several negative MRI's before they were dx'd. But if you are showing symptoms of some kind of CNS disorder/disease, why won't docs listen to that? You have to get referrals to some of these docs, like an MS specialist, and your doc won't refer you out, so here you sit!

    I thought back on other things I have experienced that could possibly lead to a dx of MS. Most recently have been the blurred vision, the balance problem ( I teeter toter very well when I stand or walk! LOL) and the other day, the area around my eye was twitching, it was the eye and upper cheek area. But I remember, about 3 or 4 years ago, my face around my mouth was twitching badly, and it lasted for about 4 days before it finally stopped. I was just ready to go to the doctor when it stopped. It was very wierd, the right side of my mouth area would quiver and tremble. Luckily I was off work for most of that time.

    So, now I wonder, if I can't have surgery, what is going to happen to the nerve(s)? Will it get worse, more compress or damaged? What will happen? Will I lose all function in that right leg? I've heard of that happening. Matter of fact, there was a young woman who goes to the same PM doc I do, and she was checking in before me, she had a cane too, so I spoke with her for a minute, she also had a young child (toddler) with her. She said that she had one disc that was herniated and that one day, she just picked up her baby and fell to the floor. I guess the disc ruptured and pressed on a nerve that caused her to lose all function of her back and leg. Well, they removed her disc and she is doing better. So why can't they do that with me? What if that happens to me? They can't take those discs out? How do they stop the nerve from further damage?

    I went to Physical Therapy, and got on my little machine that works my arms and legs and I told my therapist about not being able to have surgery. He was like "well that's good isn't it?" I said NO! I want to be able to bend over and stand back up again without grabbing something to help me up, then once I AM up I don't want to have to stand there and wait until my back "let's go" so I can take one step forward, then another step and another and so on. I want to be able to walk more than 50 yards, I want to be able to put pressure on my right leg when I stand, I can squat down, but now my knees hurt so badly from me putting all my weight on them instead of my lower back! I want to be able to sit in one posistion for more than 5 minutes before I have to reposistion myself, I want to be able to twist and turn like other folks, I want to be able to roll from my front side onto my back without breaking a sweat cuz I have to do it one body section at a time! I cannot just "flip" over onto my backside or onto my frontside! I have to WORK at it, I don't want to live like that without any hope of it getting better. And wondering if it will get worse, and why does it have to GET worse?

    Oh and this Neurologist said that it was true, I showed significant nerve damage in my right leg, but no muscle "atrophy" (loss of mass). He said that my calf muscle had not appeared "wasted" or thin and that was strange. I was thinking to myself "I was a runner for 10 years and I waited tables for nearly 15 years, you MORON!" I've always had very larger muscle mass, especially in my legs, that's why I took up long distance running. I figured with legs as big as mine, I might as well put them to use! LOL

    So there you have it guys! Thanks for your love and support, I DO so appreciate it more than you will ever know. I can honestly say, I'm afraid of my future, and that being only 46 I have never felt so "helpless" after hearing what that doc and my PM nurse told me yesterday. I always thought in my mind that it would be fixed. And I KNOW that with the pain in my back and the lose of use of my right leg, my FM and CFS just feed off that. So all three of these painful conditions are simply "feeding" off of each other, having a good old time! Also, doctors! UGH! When I was first dx'd with the multiple herniated discs, my PM tried all modalities to treat it, then made a couple comments about surgery, while my GP was telling me to wait as long as possible, to wait until I can't stand it anymore. Well, I waited, and look what happened!

    Love you all,
    tk

     
    Old 05-19-2005, 03:32 PM   #3
    MomwithMS
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    Re: Raspberries for my Neurologist! Boo Hissssss!

    Gosh TK, I really don't know what to say. Big gentle ((( HUGS )) to you.


    I can speak with LOTS of experience here. . neuros are strange creatures. I went through about SIX different ones before I found one I liked.

    Also, I also heard "yada, yada, yada it could be MS" for more than a year before I was diagnosed. Being diagnosed with MS is pretty darn close to a long distance marathon. It's long, painful, tedious, and when the diagnosis happens, you just want to rest and sit back and say "finally, the diagnosis is all over."

    I used to have my own website detailing my journey with MS, but they I found some moron copying MY story and simply changing the female aspects to male and posting it on MS sites as HIS story (geesh). Anyway, I disbanded the site. But, the main story was that I was told it was all in my head by TWO different neurologists. I had one - this terrible man, actually FLICK me in the head. He was a horrid person.
    I KNEW it wasn't in my head, so I continued to fight. I now have a WONDERFUL neuro who is regarded as the top MS expert in the entire state - if not the nation.

    My best suggestion is to GET YOUR EYES CHECKED!!! Find out if optic neuritis is causing your visual disturbances. That will be a huge step toward answers. See either an opthalmologist or a neuro-opthalmologist. Start there! It's going through the "back door" per se, but it worked for me. I had a neuro-opthalmologist diagnose me with bilateral optic neuritis and then I had a urologist diagnose me with a neurogenic bladder. I then went to a new neuro with this info, and he was like "DUH, of course it's MS."
    Once you have optic neuritis, you will always show signs. My first bout was 8 years ago, and even today, my nero can see the damage it's done to my optic nerves.

    Best wishes TK. I hope you get some answers soon. Just remember that in order to be a doctor you must be book smart enough to have no common sense! LOL Just kidding! But it sure does seem that way.

    ((( HUGS )))
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    ((( Les )))

     
    Old 05-19-2005, 04:07 PM   #4
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    Re: Raspberries for my Neurologist! Boo Hissssss!

    My dear TK, I think we all had our hopes up too high. I just
    felt like you would get an answer that was at least something to go
    on. I have no first hand knowledge like MomwithMS, so I'm really
    afraid to say anything except you need some new doctors. It seems
    to me they all leave you hanging in the balance. Is Birmingham too
    far to travel to a doctor? (UAB has all the latest medical knowledge in
    Alabama.) Maybe you need to start over with a whole new set of
    doctors with new blood work, xrays and MRIs. The ones you have seem
    to be ''passing the buck'' from one to the other. TK, my prayers are with
    you and I wish there was something I could do to help you find some answers
    you need. You are so well informed on all the problems, you may intimidate
    the doctors. I hope you find some answers soon. You are one more special
    lady!!
    Bilij

     
    Old 05-19-2005, 04:25 PM   #5
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    Re: Raspberries for my Neurologist! Boo Hissssss!

    TK, I have read part of your post and will finish, sorry can only read and do a little at a time, I'm so sorry that the day turned out that way, it sounds like the repeat of several I have had.
    I will make ref. to the S1 nerve damage, this is what I have, when I fell at work 6 yrs ago I had 2 bulging dics and tears at both levels due to fighting WC and incompetent drs I now have permanant damage to the S1 nerve and have been told by some of the top NS that I will have to live with it, no chance of improvement and prayers not to worsen.
    This is why I had the SCS implant which by the way has failed will have 3rd surgery Tue. to have it removed and flush the over 32 grand + it has cost to have the implant.The EMG was the most productive test I had.
    I wish you the very best and will keep you in my thoughts and prayers and will post more later.
    Linda

     
    Old 05-19-2005, 04:36 PM   #6
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    Re: Raspberries for my Neurologist! Boo Hissssss!

    Les, Bilji,

    Thanks for your kind words. I appreciate it. I just found a guy who was concerned with the nerve damage done to cause my right leg to be messed up and he wasn't interested in anything BUT that. He seemed only interested in what was written on his little referal sheet from my Rheumy.

    Les, may I ask why you went to a urologist? I have been having some bladder pain and pressure, and I just attributed it to be a symptom from my herniated discs. I have read that the pressure from the discs can cause problems with your bowels and bladder. I don't usually have a problem getting to the bathroom, I DO experience "false urges", that's what I call 'em. Where it feels like you just GOTTA GO, but then when you sit down, nothin' but trickles! And when I really DO have to go, I have to GO right now! And I feel a lot of pressure type pain until my bladder empties and still it doesn't feel as though the bladder is entirely empty. I won't even begin to go into my intestinal problems as that would take up too much room! LOL Let's just say, I have IBS, kinda goes with the territory when you have FM, but here lately, I'll be so stinkin' constipated, I have to "help" with the evacuation (if you get my drift!) But here lately, I feel constipated, and the cramps are hideously painful, and it actually took me two hours the other night (from midnight 'til 2:00 a.m.) to fianlly finish a bowel movement. Going from rocks to water. And the cramps, OMG, I was literally "moaning and crying". I never thought I'd feel anything like labor pains again, but this abdominal pain during all this "episode" came close to feeling like labor!

    Anyway, thanks guys for all the support.

    Oh and Biliji, BH is about a 4 hour drive and I don't know if my insurance covers that hospital. But I am willing to try anything at this point to get someone's butt moving here! My PM doc is great and it is his job to keep me as pain free as possible and I'm not letting go of him unless one of us dies! LOL I will be interested to hear what he thinks of this Neurologist's statement. My PM doc has already offered to refer me to some Neuro's he know's personally, and I may just go that route if he thinks I have a chance with surgery. My PM doc isn't one to sit by and take "no" for an answer. So, I am anxious to talk to him face to face, which won't be until later in June.

    Love,
    tk

     
    Old 05-19-2005, 04:42 PM   #7
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    Re: Raspberries for my Neurologist! Boo Hissssss!

    Quote:
    Originally Posted by jdlfmc
    TK, I have read part of your post and will finish, sorry can only read and do a little at a time, I'm so sorry that the day turned out that way, it sounds like the repeat of several I have had.
    I will make ref. to the S1 nerve damage, this is what I have, when I fell at work 6 yrs ago I had 2 bulging dics and tears at both levels due to fighting WC and incompetent drs I now have permanant damage to the S1 nerve and have been told by some of the top NS that I will have to live with it, no chance of improvement and prayers not to worsen.
    This is why I had the SCS implant which by the way has failed will have 3rd surgery Tue. to have it removed and flush the over 32 grand + it has cost to have the implant.The EMG was the most productive test I had.
    I wish you the very best and will keep you in my thoughts and prayers and will post more later.
    Linda
    Hey sista Linda!

    I'm sorry about the long post, I have a reputation for them! LOL What is an SCS implant?

    I have thought about asking my PM doc about a pump for pain now that we know that my pain is going to be serverly chronic for EVER! I know someone on the PM board (Shoreline) who has one of these and I have read up on it. I think it was called a DAS and it delivers pain medication directly into the spinal cord. My wonder is how do they stop future damage to the nerve? Do they reroute the nerve, numb the nerve, burn it? What, how do they stop the pressure on it? I always assumed that removing the part of my disc that is pushing on it would relieve the nerve pain and stop the damage from progressing. Guess I was wrong.

    Thanks Linda. Sorry my posts are too much for you to read all at once!

    tk

     
    Old 05-19-2005, 05:07 PM   #8
    MomwithMS
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    Re: Raspberries for my Neurologist! Boo Hissssss!

    Quote:
    Originally Posted by tkgoodspirit
    Les, may I ask why you went to a urologist? I have been having some bladder pain and pressure, and I just attributed it to be a symptom from my herniated discs. tk

    Oh, yes, my fateful visit to the urologist. What an experience that was.

    Well, the problem was three fold. First, I had to go (pee) all the time. I mean ALL THE TIME. When I felt the urge, it was DROP everything and run, run, run to the bathroom. It was sooo sudden.

    Secondly, I could not (for the life of me) empty my bladder. I would feel the urge to go, but I could not force my bladder to give up its contents. So, I was always in the bathroom but unable to do the deed. It was terrible.

    And third, I was always "leaking." I would have to wear "protection" at all times. I couldn't go on will, but I was always leaking.

    I was put on ditropan for this. Evidently, this is called a neurogenic bladder. My bladder would spasm and spasm (just like everything else in my body) but due to the spasms, it couldn't empty. TERRIBLE!!!

    During my first visit, the urologist checked me (almost like a pelvic exam) to see if I leaked urine when I coughed or sneezed. Nope (this was pre-children). I wasn't leaking then. He then concluded that it was a bigger problem.

    He ordered a urodynamics study. This study was quite helpful, but to be honest, it was the most humilitating moment of my life. I was 20 years old - no kids, and it was horrid.

    I was led into this small room with an RN. I had to put on a hospital gown. She then inserted a catheter into my bladder. Then, she placed electrodes under the skin "down there." Yes, it was uncomfortable. The catheter was monitored by this big machine that would fill my bladder and measure its reaction to being filled.

    I would tell the nurse when I felt the urge to urinate, and then she would make note of it. She would then have me go (urinate) to see how much of the fluid I was able to rid my bladder of.

    Like I said, it was a dreadfully uncomfortable test, but it was a "goldmine" when it came to putting the puzzle pieces together - to form my diagnosis of MS.

    If you have any more questions, let me know.
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    ((( Les )))

     
    Old 05-19-2005, 07:52 PM   #9
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    Re: Raspberries for my Neurologist! Boo Hissssss!

    Goodness, tk.

    I am so sorry you went through this. I've decided not to return to the neuro I saw.
    But I do not have the magnitude of physical problems you have, at least not the same ones.
    I wish I had some advice, but I don't, except that the idea of getting to another facility and some new docs sounds as if it is in order now.
    You are doing a terrific job of coping with all that's happening to you. Having the physical conditions is so darned hard, and then we have to deal with doctors and insurance and medications...
    And the fear and worry and exhaustion.
    I can just add my prayers and wishes for you.

    A blessing for you,

    Seaturtle

     
    Old 05-19-2005, 08:52 PM   #10
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    Re: Raspberries for my Neurologist! Boo Hissssss!

    Once again, You all are great!

    Hugs,
    tk
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    Last edited by tkgoodspirit; 05-20-2005 at 09:24 AM.

     
    Old 05-20-2005, 05:11 AM   #11
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    Re: Raspberries for my Neurologist! Boo Hissssss!

    TK, First I want to say I love your post as you always have such great advice and support, I think one of the worse parts of all this is losing my abilty to concentrate and absorb what I do read and forgetfulness in other words my MIND, the things I always prided myself on are gone.
    Your questons about the nerve are the ones that I always ask and for the life of me I never really get a straight answer unfortunatly I have not had a dr that that has been patient and informative, the search haas been far and wide.
    I have a app. this morning in Columbus with my rhuemy(please let it be a good one) so when I rerurn I will tell you about the SCS but want to say I believe I will go with the pain pump myself, I got the bill yesterday for the implant, not the trial or the revision I had just the implant (that is useless to me) anyway out-patient over $32,000, they are trying to talk me in to leaving it in now, anyway I'll explain later or I'll mess around and miss my app.
    The one I went to a month early (opps),They have called me twice this week to remind me of it, good thing..
    Linda

     
    Old 05-20-2005, 09:23 AM   #12
    tkgoodspirit
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    Re: Raspberries for my Neurologist! Boo Hissssss!

    Quote:
    Originally Posted by jdlfmc
    TK, First I want to say I love your post as you always have such great advice and support, I think one of the worse parts of all this is losing my abilty to concentrate and absorb what I do read and forgetfulness in other words my MIND, the things I always prided myself on are gone.
    Your questons about the nerve are the ones that I always ask and for the life of me I never really get a straight answer unfortunatly I have not had a dr that that has been patient and informative, the search haas been far and wide.
    I have a app. this morning in Columbus with my rhuemy(please let it be a good one) so when I rerurn I will tell you about the SCS but want to say I believe I will go with the pain pump myself, I got the bill yesterday for the implant, not the trial or the revision I had just the implant (that is useless to me) anyway out-patient over $32,000, they are trying to talk me in to leaving it in now, anyway I'll explain later or I'll mess around and miss my app.
    The one I went to a month early (opps),They have called me twice this week to remind me of it, good thing..
    Linda

    Hi Linda!

    Well, I appreciate any and every effort you make to read my posts. It means a lot that you even attempt it. And I certainly can relate to "losing your mind"! I used to be a waitress, and having 20 thoughts going on at one time in my little brain was not uncommon, but having 2 thoughts now is impossible! That I DO believe is one of the worst thing that happens with CNS disorders, that and the chronic pain.

    Okay now I'll react to the cost of that implant. $32,0000!!!!!!!!!!!!!!!!!!!!!!!!
    YIKES! OMG! HOLY BUCKETS! HOLY MOLY! GOOD GRAVY! and WHAT THE?

    How in the world are you going to pay for that? You are like me aren't you, no income? Didn't your insurance cover that? Mine caps out at $2500, so I only pay $2500 of the cost if it surpasses that amount. What's up with your insurance? Or does it not cover that procedure? Do you have an HMO, cuz I know those guys can be tough to get approval for anything? I'm just worried about this cost for you. If you are like me, you pay medical bills last. Mine all go to the bottom of the pile and they get what I got at the time. I DO know most medical companies will settle with you, but still that's a lot of dough for you. I gotta say it again: HOLY SPUMONI!

    I know what you mean about going early to appts. I did that with my PM doc once. I only went a day early, but I felt stupid, cuz he shares his office space with a Urologist, and my PM doc and his whole staff were on vacation. I was standing at his little window and was even reading the sign that had the date the doc was to return, which was the next day. But oh no, I still insisted my appt was that day! The girls from the Urologist's office thought I was crazy. I had my days so mixed up. He was to return to work on January 14th (not sure of the day really) and that's when my appt was, but I was positive that it WAS January 14th and why wasn't my PM in his office!? Well, then the girl nicely told me that it was only January 13th. I humbly apologized and crawled out of the building with my tail between my legs! DUH! And I always get dressed up real pertty for my PM doc, he's young and good looking! I didn't travel the distance you did, but he's probably about 40 miles from my house and I have to drive through a lot of city traffic, which I am not used to anymore. So, THAT day was interesting!

    I hope to hear back from you and I hope your day went great. Linda, can you please remind me of your dx again? You have FM for sure right, but I know you have other conditions, unfortunately I forgot them. I remember you have some spinal and nerve conditions like I do, only yours are Thoracic right?

    Here's wishing you a good spirit,
    tk
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    Old 05-20-2005, 10:31 AM   #13
    Glojer
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    Re: Raspberries for my Neurologist! Boo Hissssss!

    TK Oh my, what a day you had!!!! That doesn't surprise me about the neuro though. My husband has a bad back and he had to see some neuros when he had WC problems. What jerks they were, if you have never experienced it you cannot imagine. There are good neurosurgeons out there, that is where he found the best luck with a neurosurgeon. Also having another Dr. you trust to give you the referral and sort of break trail for you is really good. That is how my hubby got his appt. with the neurosurgeon who was a top one in Stl. Otherwise he would have had to wait months maybe years to get in to see him. It didn't take long before the surgeon said we can operate and pinch out the herniated part of that disc, and thank goodness because that gave my husband such relief. The clue here (in case you haven't noticed) is the word surgeon. Surgeons love to operate, thats what they do and if they know it is possible they will do it. At least that has been our experience. His surgery gave him 7yrs relief.

    Unfortunately after the 7years he was injured again on the job, but God smiled on us again and the WC doc turned out to be such a compassionate man. He sent my husband for some injections (this was 15 yrs ago) that really helped and kept him off work until he totally healed. That Dr. did not stay in the WC practice, he moved to family medicine and he was our doc for 15 years until he moved his practice again and was not covered by our insurance.

    Doing a job that required heavy lifting and physical work started his pain up again a couple years ago and he started the dr. bit again. This time though he was told surgery was 'probably not an option'. The pt said there was nothing they could do and so he was sent to PM doc who tried all the meds, and they all made him sick. He questioned again the surgery aspect and the PM doc had a surgeon review my husbands file (by this time several inches thick). Surgery was not advised, so the next step was the pump if he wanted to continue to work. Fortunately he had 34yrs on the job and could retire early with full benefits and that was the option he took.

    I guess what I want to tell you using one of your famous long posts, is to not give up. Before my husbands surgery he did the same as the lady you met at the docs office. He fell to the floor when he bent over to pick something up at work. His legs went totally numb and he was unable to move and the pain became excrutiating. This happened twice!!!! Get more than one opinion!!!! If he would have listened to some of those docs he would not have had surgery 23yrs ago and would have lost all those years of taking care of and being with and helping raise his family.

    I just have to comment on the bone scan and lupus tests. I got the results of my bone scan instantly. The computer should spit this info out right away. I had the nurse give me a copy right then and of course waited to hear from the doc a WEEK later. Same with any blood work for lupus it should not take more than a week to get results. Getting a lupus diagnosis could take months or years but the blood work done should come back in a week. Just a quick comment on the eye and mouth twitches, I have those all the time especially the eye drives me crazy you can see it moving. So try not to worry about that until you can get your Mri done.

    Hang in There
    Glojer

    p.s. I replied to your lyrica post before I got to this one obviously.

    Last edited by Glojer; 05-20-2005 at 03:55 PM.

     
    Old 05-20-2005, 11:00 AM   #14
    tkgoodspirit
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    Re: Raspberries for my Neurologist! Boo Hissssss!

    Glojer,

    My dear! Thank you. I am going to speak with my Rheumy in depth on Monday when I see her, well, I see her PA. Rule is there, the first two appts are with the PA, THEN you see the doc. I DO want a second opinion for sure, and I'll ask to see a Neurosurgeon. If my Rheumy won't refer me, I'll ask my PM doc. He takes awhile to get an answer from by telephone. He's so freaking busy. But my turn to see my PM doc will be at the end of June, so I can ask him to refer me to a surgeon. He has already told me he personally knows some good surgeons. So, I'm not giving it yet. I just want to hear it again. Of course if my PM doc concures with the Neurologist, then I won't go any further, he's pretty knowlegdable and honest. I would gladly risk surgery if it even gave me a small percentage of relief. I just refuse to believe that there is NOTHING that can be done to those discs. I'm so sick of looking at doctors, I could just punch one in the face! LOL Just to make me release a little tension!

    I will ask my PM doc about the pump if he doesn't think surgery is an option either. I certainly hope he never moves his practice, I'll have to follow the man! I'll have to tell him that it's a good thing we get along well, cuz it appears we will be together a long time. Thank goodness he's younger than me, so he will out live me!

    I figure that the pump would be the best option if I'm going to have this type of pain 'til 4ever! It would be nice to have to just get the pump filled when it needs it and use my b/t meds as needed (hopefully not often) and that would be the extent of my PM management.

    Thanks again my friend, your words are always an inspiration to me.
    Hugs,
    tk
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    Old 05-20-2005, 12:28 PM   #15
    angels_among_us
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    Re: Raspberries for my Neurologist! Boo Hissssss!

    i am so sorry sweetie NOONE should have 2 live in pain

     
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