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Emotionally Doing Better

Well after the two doctor appointments on Thursday and the wildly different dx I am finally doing better emotionally.

To update/summarize:  

Good Neurosurgeon thinks I have cervical spondylosis AND/OR MS.  He says MS is at least a 50% chance.  And he brought MS up without me ever mentioning it.  He said MS based solely on my hyperactive reflexes and my BRIEF review of the two falls where my legs crumpled, the time I couldn't walk at all for several days (he interrupted me at that point to say the lumbar MRI doesn't show any problems that could explain that and there for MS was likely) and then I mentioned both legs going numb/fell asleep and remained so for over a day.  He ordered the cervical MRI.  We were reviewing the cervical MRI this week.  No lesions but a definite bulging disk.  The bulging disk could be causing some of the problems but if it is MS then disk surgery wouldn't help much.  However the disk is a problem and if we didn't do anything it could get worse.  My decision on the surgery.  

New neurologist in afternoon says I have Narcolepsy with cataplexia.  That is why I fall down.  That is why I am tired.  No need to repeat the brain MRI (ordered by migraine neuro to rule out stroke or tumor).  Brain MRI was on a .7T open MRI without contrast.  I asked new neuro for another brain MRI on the 3T (available in my area but has to be stated on the referral).  Narcolepsy neuro says no need, the .7T MRI is clear and there are no lesions so I can't possbily have MS.  He did give me a 2 week sample supply of Provigil for the fatigue/narcolepsy so the appt wasn't a total waste.

I'm single and my family is on the opposite coast.  I haven't filled them in on all that is going on because without a dx I don't want to alarm anyone.  My family was very supportive of me through the 3 back operations and they will be very supportive but this medical run-a-round is stressful.  And I don't want my family to panic and come to my rescue when the reality is it could be a month or another 10 years before the doctors reach a dx.

I've decided today to inform my mom of the possibilities.  The narcolepsy w/cataplexia theory puts this in to perspective and is funny.  It puts a funny spin on everything and I can be more upbeat when going through the possibilities.  

I have a follow up with my PCP next Friday.  She is good.  I'll update her on what the neurosurgeon and the neurologist (that she recommended) said.  

I'm also leaning to have the neck surgery.  I'll ask her opinion.  My experience with my lower back L5/S1 level is that when I waited the disk problem became a crisis.  My disk fragmented - tore apart into many pieces - even one large chunk that I FELT FALL INTO MY SPINAL CANAL AND SLIDE DOWN.  My pain had been at a 10 on the 1-10 scale before that event and there is no scale in the world to explain the new pain.  That neurosurgeon before the operation said that couldn't happen but after the surgery he said "Wow, you won't believe this .... your disk is gone .... we can't find it but we could see a trail and picked out a few fragments ... can't do "exploratory" in the spinal canal ... will have to wait to see if more pieces can be imaged on a MRI .... more operations to come ...."  

So based on that experience I think sooner is better for my neck. And the cervical bulging disk could explain the weakness in my arms, the numbness in my fingers, my balance, coordination, etc.  I trust the neurosurgeon.  He explained the MRI to me and I understand better than he the risks of waiting.  I don't want a replay of of the L5/S1 level.  It may only be a 1 in 6 million risk of that complication but I already won that lottery.  I don't want a repeat!
4 Responses
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559187 tn?1330782856
Your post this morning was very interesting.  I'm happy to hear that you have managed to get past that dreaded last appointment, we all have been through them and know exactly how your feel.  

Your neuro thinks you have narcolepsy?  Do you think you have narcolepsy?   I wonder where your doctor got this idea.  Narcolepsy is really interesting but can be dangerous.  I have an uncle who has narcolepsy.  He has had episodes that were kind of funny at the time, but when you think about it, it can get you hurt.  

How is the Provigil working for you?  My neuro is willing to start me on it too to see if it helps with the fatigue.  Fatigue is so challenging.  It affects everything.  Your social life, worklife, even sleep patterns.  I sure hope it helps you.  

It sounds like you have thought out the decision for surgery very well.  I have a very bad disc in my thoracic spine that we are just in the watch and wait phase for.  I had no idea that it could just disintegrate like yours did.  I think your experiences demonstrate that I may bot want to wait too long to do something.  My neurosurgeon is considered one of the best in the area for spinal issues and if something needed to be done surgically he would be the only one I'd let operate on my back. What was your recovery like from you surgery?  Did you have any complications?  

Sorry for all the questions.  

Take care and I hope you can keep us updated on how you are doing.  

Julie:)
Helpful - 0
429700 tn?1308007823
I'm happy you're seeing your PCP this next Friday.  Ask her what she thinks.  Can she order the brain MRI on a 3T machine?  I think, is a wise thing just to put your mind at rest.  You had two different opinions and I get the feeling you're leaning toward the second opinion you mentioned, but are confused a bit because of the two different diagnosis.  

Because Provigil is not a drug approved for MS (I don't think it is, unless things have changed), I think this is why narcolepsy was put down.  This drug is sometimes next to impossible to get your insurance company to pay for it without the "right" diagnosis--quite expensive.  Provigil is designed for narcolepsy, but has been shown to be effective with combating fatigue.  I don't know, though.  Maybe he really thinks that you have this. ??????  This is very interesting . . .

I would go with the surgery (IMHO).  I have bulging discs in my neck, and right now they are not pressing on the cord and causing problems like you've mentioned.  However, my neuro said that I may have to have surgery, too, in the future for the reasons you've stated.  Heck, maybe some of your symptoms may just go away.  Wouldn't that be nice?  

Press on, girl.

:) Deb
Helpful - 0
Avatar universal
Thank you both.  I sent a detailed response to Sarahsmom46 offline.  

The new neuro really thinks I have narcolepsy.  After researching that on-line at mayoclinic ******* which is my favorite site and after googling narcoplexy, I do believe that I might actually have that.  I have several of the symptoms and the cataplexia subtype really applies.  My legs frequently do buckle when I laugh, sneeze, cough.  (I thought everyone did!)  The way I described my fatigue is why the neuro says narcolepsy and not MS for the fatigue issue.  I wake up refreshed and within 2 hours can fall right back to sleep.  When I lie down for a nap I can sleep for 2-4 hours and still sleep normally at night.  (Endocrinologist says my thyroid levels are normal and are not causing the fatigue.)  There are times when I am so tired that I want to crumple to the floor and sleep like a 3 year old but being an adult I struggle to my bed and sleep there.

Neurosurgeon still says MS.  

So maybe I have MS & Narcolepsy with cataplexia & Cervical Spondylosis - - in addition to the confirmed Migraines & Hypothyroidism.  

MS is alot easier to spell than everything else!!!

I'm ready to appear on TLC's Mystery Diagnosis show!  
Helpful - 0
198419 tn?1360242356
Jules,

It's is important when MS is a consideration for your script to state MS.  It will not mean that you have it, it's just so the radiologist can run the right sequences.  

I do  not feel that they can get the images they need from a 0.7 Open Bore.

If it were me, I would fight tooth and nail to get the 3T or at least the 1.5.  I was dx'd on a 1.5, closed and the images were really good.  Better even than the 1.5 open bore.

I know you have many other things that you have to consider where surgery is concerned, but again, if it were me, and knowing what I know now about MS, I would fight for new MRIs on the stronger machine.  I'm doubtful they will deny you this since MS was brought up.

ttys,
Shell
Helpful - 0
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