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mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/8/2008 4:23 PM (GMT -7)   
It's been awhile since I last posted, so I guess it's time for an update.
I was switched over to the Fentanyl patch , which is working pretty well as my base pain med. I am still taking 5-10 mg of oxycodone for breakthrough pain though. At least it seems to be better relief than I was getting after being on the Oxycontin for so long. :-)
The doctor added Cymbalta, at first once a day at bedtime, and now twice a day. I am taking 60 mg of it but I don't seem to notice much of a reduction in the neuro pain. I still take the Lyrica at 600 mg a day.
The baclofen though is still not giving me as much relief as it once did for the spasms.  They still hit often and really hard. They buckle my knees when they do hit and I have to make sure that if I am standing, I am near something that I can grab onto in order not to fall. sad
I am using my manual wheelchair more, since I can't tell when the spasms are going to hit, or where, so if I am out of my house, it's safer to use the chair.
I am still trying to figure out the funding issues for the ramp that I need to get my motorized wheelchair in and out of my house. It's frustrating to have a 38,000.00 chair that is supposed to make my life easier, sitting in my livingroom because I don't have a way to fund building a ramp.
I talked to our insurance company because I found a modular ramp, one that can be taken apart if necessary and moved to another home if we were ever to sell ours. It should be covered under durable medical equipment but my insurance says no. That makes no sense to me, to pay for the chairs, but not pay for a modular aluminum ramp that can be moved if necessary. confused   I can see  why they would not want to pay for a wooden ramp, but it really makes no sense to me, why they would not pay for the modular one????
Anyway, I have my moments with adjusting to the idea of loosing my ability to walk as I once did, but overall I am doing okay with it.
I am having some new problems though. My hands and arms go numb. In fact , my fingers are numb almost all of the time. Sometimes the numbness is worse than others, but there is always a diminished sensation in the last three fingers of my hands. It's really strange. sad
If I raise my arms to type on the keyboard tray , the arms also go numb, and also at night, when I lay down. I am dropping things too. In fact, yesterday, I dropped a cup of coffee because I couldn't get it in my grip.
I was sent for an MRI of my brain, which found two lesions, one in the frontal lobe white matter, and another in the parietal lobe white matter. They were looking for MS, but the MRI didn't show any lesions in the spinal cord, or the areas typically found in MS I guess. I am not sure what to think since I searched around on the internet and everything that I found in regard to lesions in those area took me right back to MS.
I am wondering if I need to see someone who specializes in MS to find out if it is or isn't? Any suggestions?
They also found a bulging disc at C 6 and 7 I think it was......and there is foraminal stenosis and some compression of the cord as well.....
I am worried about the lesions, needless to say, and now I am wondering if the lesions or the cord compression have anything to do with why my hands are numb? Frankly, it scares me, either way..... confused   Something is going on, what it is, I'm not sure.....
So anyway, that's the update with me, I read every day, just don't post as often.
If you have any suggestions, I'd appreciate them.
Sandi

PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/8/2008 7:33 PM (GMT -7)   
Hi, Sandi,
So sorry to hear all you're going through. I agree it makes no sense to pay for what sounds like a great wheelchair (not great that you need one, but that you have it) and then not pay what I'm guessing isn't a very huge amount so you can have the ramp to get in and out. Especially a ramp that can be moved. Can you appeal the decision? If you're on Medicare I'd call your federal congressional representative and see if they can help in anyway. Those regulations are a nightmare to understand.

As far as the MS, it seems to me it would definitely be worth consulting a neurologist who specializes in MS, and he/she could rule that in or out, as well as help to further clarify the numbness in your hands. That sounds like it could be coming from the compression in your cervical spine, and you may also have some carpel tunnel. Some of those things might be improved so you could get at least some relief. How about a thorough assessment at a teaching hospital - do you have any within a reasonable driving distance?

Not sure if this helps, but it's all I could think of at the moment.

Take care,
PaLady

Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 7/8/2008 9:31 PM (GMT -7)   
Hi Sandi,
How are you? I am a regular on the ms board, however i noticed your post and just wanted to respond because i know how frustrating this can be. I see that your doctor has you on alot of the same meds i am on for ms and it caught my eye. Also, just a little imput on a professional side. I have a license to practice Physical Therapy in the state of PA. You do have alot of spinal problems that will present with numbness and tingling if the nerves are being compressed. The nerves that innervate the muscles in the arms are located in cervical spine and the ones that innervate the lower limbs are in the lower spine. If they are compressed in any way, which in your post seems as though they maybe, they could be causing the poblems for you. Even the bladder issues can be caused by spinal compression problems. But, the lesions, hummmmm. I would deffinately seek a neuro who is a specialist in ms to see what he thinks. Geesh, i feel for you and just wanted to say hi and give you some input. As far as the ramp, are you working with a DME company to try and get this ramp approved? How about the ms society? Even tho you are not technically diagnosed, could they help you with this? or maybe another society that helps people with disabilities? Just a suggestion. Good Luck with everything Sandi!
I hope you get some answers soon.
Take care,
Lynn   :-)
Dx MS December, 2006
Started Tysabri March, 2008
Baclofen/Zanaflex Combo,
Cymbalta and Provigil


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/8/2008 10:19 PM (GMT -7)   
Hi PALady,
Yes, the chair is a Permobil chair, and it does just about everything you can imagine. It's a great chair and would really make my life much easier, if there was a ramp. It's really frustrating, in my discussions with our insurance ( United Healthcare), they will pay enormous amounts for the chair, but their reasoning is that they did their part to address the mobility issues. Ah well, I will figure it out. confused
As far as the MS thing goes, I have wondered about it, I should have "leveled off" some I think as far as the increasing deterioration goes, I would think anyway, after the CES from the first surgery and the revision surgery. Instead, I seem to continue to go "downhill" as my neurosurgeon says. Unless they both ( surgeons) missed something else, I am not sure why there is the continued deterioration.
As far as I know of, there is no reason for the lesions, and I don't remember having any brain injury that would have caused them, so why they are there is unknown. I may have to see if there is a specialist around me ( I live about 2 hours from Albany, NY and 60 miles from NYC) that I can locate. I did see a neurologist in NYC last year, who did an emg and an ssep that showed that there is a "disconnect" between my brain and through the lower spinal cord. I have to find the report for his exact words. He was doing some testing to pin down the source, but I have not gone back at this point. Maybe I will start there again. yeah
I do have carpel tunnel in my left wrist, and it does get inflammed from time to time but this is different. When carpel tunnel flares, it effects my thumb, index finger and middle finger........this is the opposite, this effects my pinky fingerd, ring fingers and middle fingers. The rest of my hands are effected but that seems to be more when I am laying down of typing or raising my arms above my head. It may very well be related to the compression from the disc in the cervical area. I will talk to my neurosurgeon when I see him next week, and see what he says since he is the one who ordered the MRI of the brain and cervical area. It is not painful though. Not in the neck area nor in my hands. It is a weird feeling, and the loss of coordination and ability to hold things is disturbing. confused
Anyway, I will let you know what my neurosurgeon has to say after next week. Hopefully he will have some ideas. I suppose an emg might give some clue to what's going on? I may ask him to do one just for my own peace of mind.
Thank you for your help. It does help just to get my concerns out there.
I have more than enough going on as it is, and the last thing that I need is yet another problem to deal with.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/8/2008 10:34 PM (GMT -7)   
Hi Lynn,
Thank you for reading my post.......and for your help. :-)
I am kind of freaked out about the numbness in the fingers and hands, since I haven't had that happen before, except for an occassional carpal tunnel flare up. This is different........much different.
If my neck hurt, I could see that it might be related to the disc bulge, and maybe it is anyway, even without the neck pain, but it's been here for awhile now, actually since my last onset of going downhill again, and I have no "reason" for it happening, if you understand what I mean....
If it would let up, then I might think that it was positional......as in having my arms or hands in the wrong position for too long, but no position makes it go away at all....it does get more intense if I have my hands in certain positions, but it never goes away....there is always some degree of numbness, if that makes sense to anyone?
And the dropsies are rather disturbing as well. Something is causing it, what that might be? Who knows at this point.
I haven't checked with the MS societies about the ramp, I am going to see if I can locate a grant or find a local organization to help with one. I did try the Center for Independent Living, which does have ramp funding, however, because my husband works two jobs to keep our heads above water, with my being disabled, we were over the threshold for the grant.....they said if I kicked him out, I would qualify and they would build a 15,000.00 wooden ramp for me.....I was dumbfounded....
There are so many like us, who aren't quite at poverty level but our insurance doesn't cover these type of things, so we fall between the cracks. We have four minor children.....and a mortgage, household bills, oil, etc....so we don't qualify.....
Ah well....Thank you for your ideas and I think that I will see a neurologist with a specialization in MS to see if that has anything to do with what's going on....
Hopefully, I will find some answers soon enough...I may come and read at the  MS board, to see if there is something that I am missing in regard to what's going on with me.....
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 7/9/2008 1:28 PM (GMT -7)   

Hi Sandi,

Oh wow, read your post and I am so sorry to hear of all the problems you have going on. One thing I do know, it is very hard to be dx'd with MS. A friend of mine lives here in Tx and she started going blind. Her vision was so fuzzy that she was blind. It came and went and she never knew when it would hit. She went to every dr imaginable in Ft Worth and Dallas and no one could give a dx. Her mother lives in Florida and there is a big group thats treat MS patients. She went there and got dx'd with MS. They got her on medication and co-ordinate her care with a dr here now. She went almost a year trying to find out what was wrong.

As the one person posted, the lost of feeling in the last 3 fingers on your hand is the number sympton of nerve involvement in the cervical spine. The compressed nerve can & will cause this. If you had a compressed nerve in your lumbar spine you would have leg pain and could have loss of bladder control. An EMG on upper extremity can sometimes pick up cervical radiculopathy, however, they are not a very reliable test. I think they fall in the low 70% bracket for accuracy.

I do hope you can get some asnwers about these lesions and soon. Please keep us posted on how you are doing. Susie



sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/9/2008 2:05 PM (GMT -7)   
Appeal with your insurance company which I am sure you are already doing, talk to local charity organizations, check with your local community services board they may pay for the ramp. Good luck.
Sj

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/11/2008 6:13 AM (GMT -7)   
Thanks Stray.......it might be a cervical impingement problem. I know when my lower back problems started, they picked up on the nerve impingements right away with the EMG. The last one I had ( I've had 4 now), included an SSEP component and that showed a disconnect between my brain and my lower back........I forgot what he called it, I have to find the report.....but they tried to get the signal from the brain to my foot on the left side and couldn't get one, at all, even with the highest settings.
Before that, they called it radiculopathy, but this time he called it something about the demyelination in the spinal canal.....
I am going to see my neurosurgeon, so I am going to request an emg to see if that shows anything from the cervical area, to rule it in or out.....I guess that's as good a place to start as any other.
I just hope that I can figure it out, one way or another. It's really difficult to deal with numb fingers and hands all of the time.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 7/11/2008 6:16 AM (GMT -7)   
Thanks SJ. I am trying that route.......we'll see what happens with it......
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..

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