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strikerx98
New Member


Date Joined Apr 2008
Total Posts : 16
   Posted 9/14/2009 10:30 PM (GMT -7)   
Hi all. I was dx about 13 years ago with FMS after years of being told it was all in my head (typical). I also had symptoms that were not in the FMS list... 3 more years of, "it's all in your head". I was then dx with Arnold Chiari Malformation. I had brain surgery at UCLA in 2000. Hang in there this IS going somewhere...

So post op my surgeon says I'm all better and my gp says, "but you still have FMS. OK, I'm down with that.

Fast forward to today... I have neck and back disk issues and started having electric shock feelings in my spine, tingling and now numbness (like Novocaine wearing off) in my bottom lip, chin and tongue. To the best of my knowledge these are not FMS symptoms. My doctor is leaning toward MS and the neurosurgeon I just saw at UCLA for my back and neck issues said, "is THAT all you have?" when I mentioned the MS thought. No, it's not ALL I have if you would have taken 2 minutes to read the paperwork I had to fill out to see you! Idiot...

Anyway, just looking for some thoughts here from other FMS peeps. I tried Lyrica a year ago and it nearly killed so I'm nervous of the other neuropothy drugs. Seeing the Physical Therapist later this week for my back and neck. Main mgt Dr. in two weeks and... suggestions?

Thanks,
Connie
45 yr old wife and mom. FMS, ACM, Arthristis, and a partridge in a pear tree.

mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 9/15/2009 6:59 AM (GMT -7)   
Well, I'm not sure if this is along the same lines, I don't know anythign about ACM. And as far as I know, I have no issues with my discs in my back.

I had neuro tests to rule out MS, as it runs in my family. One of my first complaints when fibro started was numbness and tingling in the extremities. I would also get strange sensations going down my spine, like a shiver, ending in an uncomfortable hug-like feeling in my hips. The best advice I got from reading the MS forum was that MS numbness doesn't come and go. It comes and stays. So, my neuro tests were fine, and I still have those feelings when I flare.

I also had numbness and tingling in my face, lips and tongue. Now my doctor is looking into trigeminal neuralgia after episodes of severe pain, a year later.

My facial pain and numbness has been helped with amitriptyline. This has also helped me with sleeping and the shooting pains all over my body. My doctor has been slowly raising my dose over the last year when it stops keeping things under control.

Good luck, and please let me know what your Dr and PT say. I'm very interested what they think of the numbness.
possible fibro and trigeminal neuralgia
50 mgs amitriptyline


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 9/15/2009 7:53 AM (GMT -7)   
If you have insurance push for a nerve study. (Dumb fog! Can't remember the name...) EMS? Nerve conductivity study... Can't offer much help but can offer prayers for you. Take care.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 9/15/2009 9:34 AM (GMT -7)   

I have had back problems since I was a teenager and I will get those electrical shock sensations occasionally...especially when under stress.

I have also had the "numbness of my lower lip and chin, but not much with my tongue.  I just chalk it up to anxiety because that can do it, too.  It's gone on for so long that I don't worry about it but I sure was nervous about it when it first happened.  But, it went away once I went to bed and to sleep.  I was fine the next morning.  But, if this is staying numb, I'd definitely look into it.

Sherrine 


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/15/2009 9:57 AM (GMT -7)   
Hi Connie, Have you had a MRI done on your spine? You might have some impingement
on your spinal cord, or spinal stenosis.

I have been through physical therapy for my back prior and after my back surgery. I
have degenerative disc disease. My lumbar discs were so bad that I ended up with a
dropped foot, that dragged behind me when I walked. I needed surgery and had a lumbar
laminectomy, and my foot is back to normal.

Hope you get some answers!
Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


strikerx98
New Member


Date Joined Apr 2008
Total Posts : 16
   Posted 9/15/2009 10:02 AM (GMT -7)   
I've had the Nerve test a couple years ago. Not only painful but a real rude foreigner doing it. It came back normal. Of course that was 2 years ago. Stress can cause numbness? I didn't know that. I've been on the amitriptyline for years. I know it's helped a lot. Also on Zoloft, Ambien CR, Darvocet N100, pravochol and lidoderm patches on the back. Hmmmmmm


Connie


Thanks,
Connie
45 yr old wife and mom. FMS, ACM, Arthristis, and a partridge in a pear tree.

strikerx98
New Member


Date Joined Apr 2008
Total Posts : 16
   Posted 9/15/2009 10:15 AM (GMT -7)   
Hi Robin,

I've had a brain MRI a few months ago to check my 9 year post op site. The next month I had a c-spine MRI where they found a right side facet hypertrophy, couple bulging disks, a impinged nerve at C7 a hemangioma at T1 and I have a slightly reversed lorodic curve. Yes, there's no wonder I have pain in my neck.

Mid back is starting to hurt but never examined.

Lower back had a midline minimal bulge with central annular fissure back in 2007 and hurts MUCH worse now.

I know I need a full spine MRI with contrast. I just need someone to order it. I also know some of the neuropothy can be coming from my back but everything I've researched didn't show that it would cause it on my face.

Any more thoughts??? Please... I'm open!

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 9/15/2009 10:36 AM (GMT -7)   

It's anxiety that can cause numbness and tingling around my mouth and chin.  I was checked out...especially my blood pressure...so I know that's what's causing this in me.

Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/15/2009 3:14 PM (GMT -7)   
Connie, Have you had bloodwork done to rule out connective tissue diseases?I know that
people with lupus can have neuropathy problems.

Vitamin B deficiencies can cause neurological symptoms too.

Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


strikerx98
New Member


Date Joined Apr 2008
Total Posts : 16
   Posted 9/15/2009 3:42 PM (GMT -7)   
I do take B12 and a multi-vitamin. Staring fish oil supplements today. What connective tissue diseases would they check for and what would the blood tests be? I've had the, "basic" test for lyme and my thyroid, liver and diabetes are checked regularly and recently. One of my best friends has Lupus and she and I see the same doctor. Happy to look into anything at this point and my doctor is always up for suggestions.
Connie

45 yr old mom of 3 and wife of 1 - plus 7 dogs, 3 cats, 2 turtles, pond fish, canary, and Madagascar Hissing Cockroaches.
_____________________________________________________________
Arnold Chiari Malformation 1 - decompressed & C-1 Laminectomy in 2000
Fibromyalgia, Osteoarthritis, Degenerative Disk Disease, possible MS.


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/15/2009 5:28 PM (GMT -7)   
Connie, one of the first tests they usually run is an Antinuclear antibody test (ANA) that
determines whether you have autoantibodies to the cell nuclei. The thing with that test some
people can test positive and not have an Autoimmune disease. I am one who tests sero-
negative but presents with other positive antibodies. Diagnosing autoimmune diseases is
difficult because the antibodies in our blood wax and wane. I have MCTD a combo of lupus,
scleroderma, and in my case RA.

I mentioned Lupus only because I know that disease can cause nervous system
involvement. Your doctor could run an ELISA 8 to see if you present with any positive
autoantibodies. Talk with your friend who has lupus and see if you have any common
symptoms, I hope I didn't scare you. You said you were open to thoughts. And because
fibromyalgia mimics alot of the autoimmune diseases, doctors should rule out that
possibility.
Couldn't your ACM be causing be causing some of these neurological symptoms?

Robin


MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 

Post Edited (crazykitty) : 9/15/2009 6:50:13 PM (GMT-6)


erwin
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/15/2009 5:43 PM (GMT -7)   
pain management works I'm seeing one that does epidural nerve blocks.

strikerx98
New Member


Date Joined Apr 2008
Total Posts : 16
   Posted 9/15/2009 8:42 PM (GMT -7)   
"Couldn't your ACM be causing be causing some of these neurological symptoms?"

That's what I thought, but the MRI shows that the cerebral tonsils are out of the way of fluid flow so according to the last neurosurgeon I saw a week ago at UCLA, no. I had the decompression surgery and I am cured. Ya right. So, my symptoms don't match that of my friend with Lupus although we do have "some" overlaps because we both had ACM and both had the surgery.

BTW, just took a fish oil pill for the first time about 25 minutes ago and I feel like I'm going to be ill.
Connie

45 yr old mom of 3 and wife of 1 - plus 7 dogs, 3 cats, 2 turtles, pond fish, canary, and Madagascar Hissing Cockroaches.
_____________________________________________________________
Arnold Chiari Malformation 1 - decompressed & C-1 Laminectomy in 2000
Fibromyalgia, Osteoarthritis, Degenerative Disk Disease, possible MS.

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