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Posted 2/13/2008 10:05 PM (GMT 0)
Kiera, I was doing a bit of research on what you've been dealing with --

http://www.spinaldisorders.com/spinal/index.php?option=com_content&task=view&id=64&Itemid=37

And it sure sounds to me (and remember, I'm NOT a doctor!) that this disorder can bring about a lot of the symptoms you describe --- numbness, tingling, pain, etc.  Surely your neuro knows about that diagnosis and is taking that in to account when he talks about you "not needing neurontin"??

Posted 2/14/2008 12:39 PM (GMT 0)
Thanks for this link.

The spinal doctor thought he'd solved the entire mystery and i must admit he could describe most of my problems from the shoulders up to include a jab i get in right side of my head. He says its moderate to severe on left side of spine and severe encroachment on right side. I was most surely hoping that he knew of a surgery but he said that in my case, no. It would have to be injections with pain medicine and he felt that he could remove 80% of my pain.

I returned on second injection to ask him if it could/would affect my legs, the answer was no.

I continued on to the last hospital with them aware of all of this. They said this didn't negate Ms and that it wasnt good to blame one on the other (didnt know asking was), and that they agreed with his decisions.

After 3rd injection it really did remove alot of pain. I'm going to have to look at my calendar to see how long its been (doesn't seem that long) but he did say it could be done every 6 months if needed.

I thought at the time, id not need it that often for sure...now i dont know.

My local neuro i believe, thinks of MS and doesn't really remind himself of the other condition although ive made him aware of it several times.

I'm glad you posted this when you did, because ill be sure to remind him and possibly he and the other doctor could talk?

So i guess wondering about pain medicine can be as simple as looking at this one only without even adding the other. As it was done in that order.

If ever you hear of any new things that may be developed for helping this, pls let me know.

Id give anything almost...(not my little child lol)..to not have both.

I recieved my own renal reports back that i sent off for. They'd already ruled out alot of this (bad docs) things during their study and it says
Non neprhotic protienura, previous insult resolving

So maybe taking this to him will lighten his fear up.


thanks,

kiera

P.S. I have had second opinions on surgery and at this time have been told im inoperable. This has been in the local area only.

I've thought of going to the spine specialist at the larger hopsital, i dont know if id be wasting my time and his or if there might be something that could be done, that the doctors around here are afraid to attempt.

Posted 2/14/2008 1:51 PM (GMT 0)
Ms. Uppity,

I wanted to mention to you something and didnt need to have it cluttering up the other threads.

It is highly possible that both things suggested to me are correct:

If<keyword and When<my spine pain is dealt with and has been in past with injections, the flares were seemingly less intense. Although spasticity wise/On wise/sensitiviity to heat wise/etc and etc wise...alot of those symptoms were happening but i was still functional and not nearly this bad so it has been suggested to me that it can work both ways...being...

the ms can flare the encroached area due to the inflammation process and therefore throw all things acute and feeling severe even if they aren't at the time (meaning injected for foriman).

and the other way...that if i hadnt had several whiplashes which rendered this , id be able to manage this all alot better.

I don't wish to mix mine up with everyones and confuse them of whats coming from the MS. I had the best look at it after the 3rd injection. Even though the ms would bring about some of that pain again it was largely reduced and more classic signs and symptoms of ms were plain.

When the injections wear off....and they do so without my somtimes being aware of how much is from what...everything worsens and this, what we've covered, is the result i get. Alot of pain.

I'd like to thank you for covering the medicine issue with and for me. I know that I never wanted to see my life come to using a medicine thats so quickly judged by some as gutteral<lol..but your posts, made me stop and really ask myself. Do you have this much pain? the answer is yes,,and more than i can communicate on type.
So, I've decided after sleep study that I won't ever again allow someone (rheumy) to make me feel ashamed for what is not my fault. I do appreciate what you did and wanted you to really know it. Lifted tons of stress from me!

It's such a shame that it seems they want to look at one or the other but never both at the same time. As you know we devide up with all these specialists and sometimes each one remains in his own territory without really giving as much thought to the "whole" picture, as needed.

I hope someday that they do find a way to better fix the spine. That at least relieve that area a little longer of time, and they might certainly do this. As they constantly come up with new methods for these things.
I certainly dont want to get jumbled in a ton of surgeries but it might not end up being totally without it.
They say nonoperable but at the same time, the Rheumy suggested id have to do all these exercises daily without 1 day off until i was 97yrs old to keep from having them. so? who knows?

I appreciate your taking the time and i really can think all day of what you've been through. Just because it seem's that things are for a reason, and that what you've experienced can help so many to see that life during MS still can go on , and you've mastered it to a greater functional level than a lot of people can or do.

I guess i really shouldn't say mastered. You've adjusted and learned to take alot of things. To absorb alot of knowlege and pain and deal with it as it happens. Or like you said, that you dont think about it as this is your new reality.

I'd almost love to just have my spine be not so encroached for one of these , that i could relate to the MS by itself, ive had a bit of that as i mentioned above^

Still painful and some new things always alarm until the body readjusts, compensates, and accepts. I would also imagine this is why we don't see the amount of disability in me (yet) that would come from this much pain if it were solely Ms.

I think I may not of typed that very well or accurately. I do think however, you can understand what i'm trying to say..ur a cat afterall! lol

thanks alot,

kiera

Posted 2/14/2008 2:15 PM (GMT 0)
Ok ms uppity, im sorry for all of these posts but i sign off and then i think of something. I really dont wish to boggle the wole board with so if you want to somehow fix this or erase this thread when read thats fine with me.


I was going to tell you , that one time they tried fetynyl 100 (used mostly from what i saw from researching it) for terminal patients or severe chronic pain usually seen in terminal.

It didn't bude a thing. I mean i felt Zero relief. I do believe for #1 that medicine didnt help as much as a simple opiate for me and for #2 so much was neuropathic that it had no affect on it at all. I gave them these back as they are even more risky and hard considering all of the cautions used with them. You also merely (as u know) cant just take them off when needed as you ruin the entire 3 day thing.

I truthfully felt no relief. I had them for about 6 months and woudnt use them after the first try. Right before insisting they take these back i tried once more, again nothing at all. Was like id taken a bayer baby aspirin.

Now for some odd reasn the opiate does help the bone pain where they fetanyl didnt, mildly anyway. But any relief is relief at some point. Neurontin is a major for me as you can see why from this.

My greatest relief ive found was with combination opiate and neurontin while in hospital but i think when its all said and done, it has to be neurontin/painmed/injections , and i pray that some other form of help is invented in the meantime.

Yanno how you hear of a failed back surgery and the person having a morphine pump? Id dare say, i have that much pain. I'd surely never want a pump unless it was for the baflofen. I'm just saying that this is how much pain i truly have.
I've also had 3 yrs to consider it all and see all the different attempts at relief.


((((((((uppity)))))))))))thanks!

kiera
Posted 2/14/2008 3:17 PM (GMT 0)
Medications are "strange beings" -- what works well for one person will often not work at all..or only poorly..for someone else, even when their conditions are similar.  I think that's why there are often a lot of different options to try. If a doctor prescribes something and tells you that you should feel or be better in a certain amount of time..and you're not..it's really important to call back and tell him so, and see what other options might be available.  Sometimes, too, different versions of the same drug will work in different ways. For example, my husband has a medication he takes for his cluster headaches.  The "brand" version works well. A generic -- supposedly the same medication but in a slightly different (and cheaper!) form...doesn't seem to work at all.  I know there is some hint that maybe there's a "placebo effect" .. that it works better because he thinks it does...

but I also know my husband pretty well, and he's not one to have much faith in medicine at all, much less worry about whether it's "real" or not real...he just doesn't do as well on the generic, so we always have to remind the doctor to write the prescription specifically to get the brand name (for insurance purposes.)

As for whether your back pain can also trigger MS problems...seems to me there's a reasonable link, there.  I know that whenever I am ill with something else, for example, whatever MS symptoms I have are worsened, or at least seem worse, when I'm dealing with the other illness.  And since we know MS is a form of inflammation, and your back back is as well, seems reasonable that there's a link there, too. That's why it seems really important that you be CLEAR with ALL your doctors about BOTH conditions, and what you're doing to manage both, and make sure they're all "on the same page" with you for treatment and relief.

Take care.

Posted 2/15/2008 2:44 PM (GMT 0)
Id always heard that what work's for one, might not for the other. I dont think i appreciated that statement until i saw the fetynal did nothing for me at all.

cymbalta does nothing for me.

Lyrica although made by the same company does make my  ankles swell and provides zero relief.

Yesterday though i did take the neurontin, only 1 and was able to funciton and even clean some.

I took a small break through amount of the pain med. (1)

I really was wondering how i was going to continue, i simply couldnt remain like that. After the sleep study I now (thanks to your support) feel there will be relief found for me.

I had a talk with my hubby and i told him. If ever a doctor wishes to change my meds for pain, i have no problem, but i would think a good doctor would say, lets get you weaned down off this and transition you over to what i think might be more helpful. I told my hubby that the doctor that i would trust most certainly would not use gutteral as a method of trying to demand compliance to his ideas. He would be caring and trying to be helpful , not making me feel even worse. Thank you from the bottom of my heart. I'll no longer let anyone make me feel that badly about suffering again.

The last time i picked up my meds they said on the script "brand name necessary" so your hubby isn't alone. Even the doctor see's this as important. There must be more differences than we know.

I also think that your hubby is like mine, doesn't care enough about medicines for placebo to really be an issue.

I also do find that yes both are relative. The back triggering ms symptoms and vice versa, from this point forward when discussing management and relief BOTH will be mentioned. One day also by doing that, who knows if some doctor might know of something that could benefit me  (new procedure that i hope for).

I thank you kindly and i was to the point of not knowing how i was going to live , but not wishing to die.

thanks

kiera

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