Two questions please: First one is about Radiologist's, Second regarding MS Relapses

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PrayerWorks
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 8/28/2009 2:12 AM (GMT -6)   
First I apologize for not writing lately but I had been back in the hospital and two more surgeries later having such a wonderful time.....lol
 
Secondly, I apologize about my first question as I know it does not regard my MS but I just wanted a more patient experienced thought about it and to see if anyone else has been told this or something similar.
 
Q#1:  I was recently told by a Neurosurgeon's Office that if you have ever had spinal surgery and later have any MRI testing, that the Radiologist always deliberately makes the report seem worse than things really are.  I've had two cervical spinal surgeries (herniated discs and titanium plates screwed in on C5-6, C6-7). When my Neurologist wanted to get a new MRI for my MS the cervical part of the report came back with concerns to me. (#'s 2-4) 
 
Findings:
 
1. Anterior spinal fixation hardware with vertebral body screws at C5, C6 and C7 with fusion.
2.  Small posterior disc osteophyte complex at C3/4 indenting the anterior CSF space with right unicate arthrosis producing mild right neural foraminal narrowing. 
3.  Small broad-based disc protrusion at C4/5 indenting the anterior CSF space.
4.  Disectomy with surgical fusion along with posterior disc osteophyte complex at C6/7 indenting the anterior CSF space. Bilateral unicate arthrosis producing mild bilateral neural foraminal narrowing.
 
Now I'm most confused because my last surgery was on C6/7 in May 2008 and the report showing such on #4 regarding C6/7.
 
I thought that my Neurosurgeon needed to know about this report and had it faxed to her office.  Her secretary calls me the next day and said "Dr. >>>>" said that the report's fine and that anytime you've had spinal surgery the Radiologist always makes it out worse than it actually is" I already had a follow up appointment scheduled this month w/her anyway - well, after this report she decided I didn't need to be seen unless a new problem develops since I'm under a Neurologist's care for MS now.  EXCUSE ME?
 
 
I promise my next question is very short......I'm sorry for such a lengthy first one.
 
Q#2:  What is the longest relapse you have experienced with your MS?  I have been in a relapse since the end of November 2008 and haven't gotten out of it yet.  So I'm curious if anyone else has had one last really long or longer?
 
 
Thank you all for taking the time for reading this and God Bless anyone willing to offer their experiences.
 
Sincerely,
PrayerWorks

Pray without ceasing. In every thing give thanks: for this is the will of God in Christ Jesus concerning you. 1 Thessalonians 4:17,18
 
Just started Copaxone 06/2009
Monthly IV Solumedrol since 03/2009
Diagnosed RRMS October 2008
ACDF C6/C7 May 2008
ACDF C5/C6 May 2005
 
 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 8/28/2009 10:14 AM (GMT -6)   
Hey Prayer,
 
I am venturing to say that you are not in an active flare but instead suffering from symptoms/damage done by that flare.  Does that make any sense?  If you truly think you are actively flaring since november you need to see your neurologist!  My longest flare lasted oh maybe 3 weeks.  That was over two years ago.  I still deal with symptoms from that flare.  Some things just stay.  It has to do with the permanent brain damage we end up suffering.  Many people with RRMS don't every get back to a normal baseline after a flare.  Instead you are left with residual symptoms that become your new baseline.  But, please, you need to discuss this with your doc!  You sound miserable.  Are you on a progression therapy? 
 
I am sorry about all your neck problems!!!  I would honestly seek a second opinion on your MRI! Your neurosurgeon sounds like he is making excuses!!!  I also have a herniated c5 - 6 disc.  I am opting for no surgery at this time.  I am trying to treat it with excercise, PT, posture changes, inversion therapy and the like.  So far so good.  I have pain but it is slowly getting better. 
 
You might want to post your cervical MRI question on the chronic pain board here on HW.  There are a ton of folks over there with a lot of experience with neck and back problems.  I don't have too much experience at all. 
 
My neurologist believes that my neck problem is the result of chronic spasticity in my upper neck and back.  Those mis-firing muscles have pulled things out of whack.  I am on blacofen to help with this.  Just a thought for you to consider.
 
Thanks for coming back for a visit and keeping us posted!  It was very nice to hear from you.  Please let us know how you are.
 
 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


PrayerWorks
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 8/29/2009 4:32 AM (GMT -6)   
Hi Gretchen!
 
I'm so glad to hear from you! I hope everything is going well for you.
 
Oh how I hope you are venturing on the right path.  The reason I questionned about such a long relapse is that I had roughly 5 1/2 weeks last year of remission from my previous flare.  My previous flare last year ended late September. In November I was seriously ill, ICU 5 days, 2 surgeries on L kidney. My stent caused too much irritation therefore I was bedridden for 32 days. After this is when experienced my first MS Hugs. In January I asked my GP for oral steroids b/c I feared I was starting to relapse again.  They didn't work. So my Neuro started me on IV Solumedrol in March and urged me to get on meds, so we chose Copaxone. (my insurance company's red tape about this specialty drug delayed me being able to start treatment until June). I've been getting the infusions monthly, except for August, because of my hospital stay & same surgeries again - even the same Kidney!
 
Anyway, I've been seeing my Neuro regularly and he continues to state that I have not shown any improvement since Nov., that I am neurologically declining each time he sees me.  Unfortunately, my last visit also informed me of new lesions on my brainstem which explains why I'm having episodes of deafness.  My spasticity in my legs is getting so much worse. I honestly never thought that my "normal ms leg pains" could take such an intense detour.  I'm taking Zanaflax (increased to max dosage), Amrix, and Valium - but I'm almost in tears because they hurt so badly, even down through my feet. I also take Hydrocodone for pain but it doesn't do anything anymore.
 
Honestly, I'm scared too. I'm having a lotm of different sensations and episodes of complete confusion with brief periods of unconsciousness that I absolutely have no memory of.  Example. I begged my husband to take me to Sam's so I could get out and enjoy my first shopping since Nov. I even rode in the scooter. Everything was going well until we were almost finished. I remember being by the bread section, that nano seconds were going by with my husband getting upset with me and then.....hey I'm in my bed at home, who put the food up? How long have we been home? My husband told me that I just started lagging behind, he then noticed that I would stop. He told me that he walked back to check on me and asked me questions but he couldn't understand what I was saying. My speech was slurry and wasn't making any sense. Then he said I would try to start going and then just quit, my eyes rolled back in my head, and my head just flopped wherever.  He told me that it was the hardest thing to to get me out of the store b/c he couldn't keep me awake or aware, and that if he tried to get me to "wake up" I was very aggitated and basically mean.  I don't remember this. We checked my meds to make sure they weren't the culprit, but I hadn't taken any several hours prior. (most of my meds' increases are at night).  Well, it's happened to me several more times now.  I am anxious to get to my Neuro on Sept. 4th.
 
The really strange thing is that these episodes started after my most complexing new experiences:  First it started like this, I was laying in bed awake and started feeling a tingling pressure like sensation inside my head (my head felt like it was a ballon being filled up but with tingling in it too), it consumed my entire head and then symmetrically traveled down both of my arms at the same time. This sensation would occur over and over for a few minutes and then stop.  I had told my husband about it right afterwards.  Well, it occurred that same way several more times; however, I wanted my husband to feel my skin or muscles when this was occurring.  Therefore, we decided I'd let him know & he'd check. The weirdness continues:  They occurred and I was verbally seeking my husbands attention and looking at him and it was like can't you hear me?? I could hear me....why can't he hear me? He was awake laying next to me and I was awake so I can't understand it.  Well, I feel as if I should be a lab rat. THIS sensation now consumes my entire body.  I feel it starting in my head and it just goes right through me and yet I still can't verbally make sounds my husband can hear????
 
I've searched the internet but I can't find anything to really pinpoint it.
 
 
You know Gretchen, I think your neurologist might be on to something regarding your neck. I've never thought about the spasticity playing a role there but it would really make a lot of sense.  I started having neck problems/leg pains when I was in first grade. My first neck problem occurred when I turned my head to say something to a girl sitting beside me & ouch! I couldn't move my neck back! My neck muscles were frozen stiff. A dr painfully forced my neck to the front and placed me in a neck brace for 6 weeks, never knowing the cause.  Then in my early 20's I woke up one morning thinking I slept wrong but it continued to get worse, to the point my neck was frozen sideways.  I was sent to therapy to get it tilted upright and straight. I remember my muscles being hard as bricks. My PT told me she had never seen a case like me before and she was fascinated. It took over 4 months of ultrasound heat waves, massage, manipulations, and even having to do the pulley over the door w/me on the other side going against the weights to get it straight!.
 
I am just tickled pink that you shared this with me! I am going to seek a second opinion for the Neurosurgeon but I have to wait until November 2nd to get in.
 
I know I posted too long but I guess I just needed to vent it all out.  It's so comforting being able to talk with someone who can understand.
 
 
Please keep me updated on how your neck is.  I've had the epidural injections and they truly helped my pain levels.  I will say that the cortiszone burns like no other in that type of injection, but it only lasts a couple seconds and then the relief starts setting in. I love my dr that did my injections. I never felt the needles, only the medication.  If you get to a point that your arm hurts really harsh, try raising your arm and resting it on your head, or just elevate your arm above your shoulder. Somehow this can release some of the pressure on the affected nerve(s).
It helped me both times tremendously.
 
Thank you so much Gretchen!
I sincerely appreciate your guidance and listening ear.
I promise I will try to make my future posts shorter.
 
 
 
 
 
 
 
 

Pray without ceasing. In every thing give thanks: for this is the will of God in Christ Jesus concerning you. 1 Thessalonians 4:17,18
 
Just started Copaxone 06/2009
Monthly IV Solumedrol since 03/2009
Diagnosed RRMS October 2008
ACDF C6/C7 May 2008
ACDF C5/C6 May 2005
 
 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 8/30/2009 8:27 AM (GMT -6)   
Wow!  You need to be very aggressive with your neurologist.  Why does he think you are progressing so consistently?  Is he sure of your diagnosis?  Could this be something else?  What other treatment options could he consider to put the breaks on this?  Don't just accept, "gosh you are getting worse each time I see you." 
 
Is this an MS specialist?  If he is not, then find one right away.  If he is, and he has no plan for stepping up treatments, then ask for a referral to another doctor.  I don't mean to sound like an alarmist, but RRMS doesn't just keep progressing like you are doing. 
 
Please keep me posted.  You are in my prayers.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


PrayerWorks
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 8/31/2009 12:29 AM (GMT -6)   
How amazing, my family and I have been hashing over some of the same questions you replied. 
Gretchen you are one of a kind!
 
My neuro is not an MS Specialist; however, he has MS himself.  I used to think that was blessing, now...well my family & I are questionning this.  I assume the reason why he states I am declining is because I have not shown any improvement physically or cognitively.  My original MS symptoms are just getting worse and worse, instead of leveling off or any improvement. Plus I am also continuing to gain more symptoms as time passes. 
 
We decided that I need a 2nd opinion for both Neurology & Neurosurgery.  After doing some research (only 3 MS Specialist Centers in my state which houses all of the MS Specialist Dr's) we decided on one.  My GP submitted a referral for me and the earliest appointment is November 2nd. I hope the specialist will be eager that day as I am bringing a copy of every medical record with my name on it!  I"m sure I'll need luggage to put them in.  The only downside is that it is a 6-7 hour drive from where I live.  Distance really didn't play a role in choosing b/c the other two are 5-6 hours from where I live.
 
I've been questionning the RRMS diagnosis ever since I met a particular couple. The husband has a progressive form of MS and his MS story is extremely similar to me. Even his wife told me of how I remind her so much of her husband.
 
I can't wait to see the specialist in November.  I just hope I can get the best possible medical treatment(s) and I want a true diagnosis, even if they still say RRMS.
 
I also have my reg. scheduled appointment Friday with my current Neuro, so we'll see what comes from that storm.
 
How is your neck situation doing? Are you having a lot of pain with it? You are in my prayers.
 
Thanks Gretchen,
I'll keep you posted.
 
   

Pray without ceasing. In every thing give thanks: for this is the will of God in Christ Jesus concerning you. 1 Thessalonians 4:17,18
 
Just started Copaxone 06/2009
Monthly IV Solumedrol since 03/2009
Diagnosed RRMS October 2008
ACDF C6/C7 May 2008
ACDF C5/C6 May 2005
 
 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 8/31/2009 9:29 AM (GMT -6)   
You are too sweet!  I have a bit of a neck ache and you are having such problems!  I am fine!  My neck is much better.  I have not even seen a doctor about it.  I was suppose to do that and I will.  I am paying attention to my bad posture, and doing more stretching and exercise.  I got an inversion frame and I imitate a bat a couple times a day!  That seems to be helping! 
 
I am worried about you.  RRMS does mean at least a leveling off of symptoms.  I have periods where I am acutely ill with MS symptoms.  Those symptoms are either brand new or old ones that are suddenly much worse.  Then things level off.  Slowly I will feel better and those symptoms will lessen.  I don't ever go back to "normal" but I will then have long times of predictable, managable symptoms.  You just don't seem to be presenting that way! 
 
I am so glad to hear that you are going for a second opinion.  You may want to fax or send as much of your relevant health records as you can before the visit.  You will still need to bring all your records with you.  Try and create a simple time-line that references the major test and findings.  Your new doc will want to access your records quickly and that may help.  That November 2 date seems a long way away.  Can you get on a waiting list for a cancellation?  That my be hard with the distance you are driving. 
 
Hey, how is the copaxone going?  It will be a long while before that does anything if you have RRMS.   Keep up the faith and hope.  I am very convinced that the copaxone is working for me.  I know someone with progressive MS and the copaxone still helped.  Whatever this is, I am praying that you can put the brakes on!
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


PrayerWorks
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 9/7/2009 1:43 AM (GMT -6)   
Update: I went to my regular neuro appt Friday. He basically said that my body had not recovered yet from the event in Nov, and now this last one has hit me really hard. Something about my immune system was already compromised by having the infusions, then Copaxone, infection, surgeries, etc.  Therefore it's not recommended for further infusions for a month or two, stay on Copaxone and a nurse will call me in 2 weeks. If no improvement then a different MS therapy will be started (Avonex I think).
 
He told me that unfortunately this is how MS can be and I've been hit over and over so I'm in a horrible flare. I just want this flare to be over, or at least lessen the grip over me.  I had previously asked for a copy of my medical records (almost 30 days ago) and still haven't received them....as if I am surprised....so I was told that it would be done that afternoon and mailed to me. I'm not holding my breath.
 
At least I will finally get my own standard wheelchair now! I asked them when I could get my own chair so the borrowed chair could be returned to the hospital....how surprising that they never noticed....or checked my chart for the rx!
 
Gretchen I hope your neck is on the road of recovery! The "bat moves" are very theraputic. They help me greatly, as if I am able to stretch the kink out without stretching...weird, but it works. I would also recommend massages as well.
 
OH, and before I forget my neuro did talk about a new drug that has just come out, starts with a C, that is supposed to help with pain, energy, also fibro pain, and something about depression too. Unfortunately I can't remember the name but I will find out. (I recorded the dr's visit w/a digital recorder in my purse) Sounds weird but I want to make sure that his verbal statements match my medical file.
 
My restart of Copaxone hasn't been very nice. I've started exper. huge hives, red welts, quite a bit of bleeding, etc. A complete opposite of when I started it back in June....I wasn't having any kind of reaction and had to put paper tape over my injection site so that hopefully I'd know where my injection was on the next round (couldn't even tell where my shot went in!) now I've had large bruised areas, lumps, you name it. But, I'm determined that the site reactions will lessen more and more and be back to my original reaction self.
 
Anyway,
I hope your neck is still getting better!
 
 
 

Pray without ceasing. In every thing give thanks: for this is the will of God in Christ Jesus concerning you. 1 Thessalonians 4:17,18
 
Just started Copaxone 06/2009
Monthly IV Solumedrol since 03/2009
Diagnosed RRMS October 2008
ACDF C6/C7 May 2008
ACDF C5/C6 May 2005
 
 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 9/7/2009 9:18 AM (GMT -6)   
It sounds like he is talking about cymbalta.  Is that the med?
 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


PrayerWorks
New Member


Date Joined Mar 2009
Total Posts : 17
   Posted 9/8/2009 12:47 AM (GMT -6)   
I don't think he was talking about Cymbalta. I just played back my recorder and it sounds like he's saying "see-no-wha", that it's a new fibro medication that has epinephrine properties, etc....I'm bit taken back by listening to the recording. I didn't know that my speech was getting so slow, slurry, and how bad I sound cognitively. I'm trying not to think about it b/c it's definitely upsetting. cry
 
I hope things are going better your way. How are you doing? Is your neck pain getting better?
 
Have you ever seen or heard of a chair (like a wheelchair) that's made for people to use in areas that you would need to be higher? Like the kitchen? I was watching a documentary and an Iceland woman w/MS appeared and it showed her in a traditional wheelchair going into her kitchen and then she moved herself into this "other" chair that enabled her to move around the kitchen and be at the countertop height, etc. It looked really neat and I've been searching trying to find what her chair would be called or where I can find one.  Just thought I'd throw this out there in case anyone knows or has an idea of what I'm looking for.
 
Gretchen, thank you. You have such knowledge and insight. I appreciate it very much. 
 
p.s. Is it normal to have a lot of different meds when you are in a flare/out of a flare? I know that most meds are symptom based. I just feel like a medicine cabinet or a home pharmacy.
Pray without ceasing. In every thing give thanks: for this is the will of God in Christ Jesus concerning you. 1 Thessalonians 4:17,18
 
Just started Copaxone 06/2009
Monthly IV Solumedrol since 03/2009
Diagnosed RRMS October 2008
ACDF C6/C7 May 2008
ACDF C5/C6 May 2005
 
 

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