I've been having mid back pain for awhile now and pain right on my mid spine. It's gotten worse the past few days after being awake for a short while. It now also involves the burning nerve pain I get in my feet and other places at times and increased spasticity in my back.

I've told my neuro about the mid spine pain and that I thought I had to have some lesions on my spinal cord. I requested more than once an MRI of my spine, mostly because I've never had an MRI of my spine ever and the back pain I get. He flat out told me, " You don't need an MRI of your spine." I had a MRI of my brain in May and there were no enhancing lesions. I've been on Copaxone since October of 1999. ( one month after my official diagnosis)

I'm on a low dose of Neurontin, 300 mg 3 or 4 times a day. I'm taking Baclofen also , but only 5 mg @ bedtime. I can increase it to 10 mg twice a day which is what the prescription says. I didn't want to take the full dose because I'm afraid of weakness from it, on top of my other symptoms that wouldn't be good.

Anyhow, my question is, Do you all think that my increase in back pain and burning pain is a lesion on my spinal cord flaring up? Tips on what I can do to be more comfortable? I'm taking 800mg of Ibuprofen and it helps some. Thank you whoever read all this. I'm so glad I have you all to come to and who totally understand what I'm going through. ( Of course, I wish none of us had to go through this stuff.) Please know how much I appreciate you all and your input.

Hi Desinie:

Your neuro's indifference must be really frustrating.

Two years ago I experienced a similar symptom, a burning pain on my spine right beneath my bra strap. The spot wasn't much bigger than a toonie. Over the weeks it came and went until finally it hurt enough that I could not sit, stand or lie down comfortably. Several months later I woke with numbness, more pain covering my left side. My urinary retention worsened and my bowels became incontinent.

My doctors attitude was "wait and see" since I could walk.

I don't have an MS dx because I don't have lesions. However I have been left I have been left with permanent bowel incontinence.

In hindsight I wish I'd had an MRI at that time too. Sound like your neuro should be paying a little more attention. If you do start to have bowel or bladder problems as a result of this pain make sure you get in ASAP. The consequences of a 'wait and see' approach is not pleasant.

Best wishes Desinie. Hope it clears up soon.

Hi, Desinie. I'm very surprised that you never had at least an MRI of the c-spine! From what I've seen, that's pretty standard. My specialist ordered a thoracic MRI after my dx (brain and c-spine MRIs were done initially) and that's where my only spinal lesion was found. I can't speak to what you're personally experiencing but even in the radiologist's report of my t-spine the impression included "back pain". The truth is, flare up or not, if I were you I would definitely want an MRI of my c-spine and t-spine. At the very least it would be a baseline for other spinal MRIs that might be deemed necessary or helpful down the line. I hope your doctor ultimately comes through for you!

I think the way I would first try to approach this, is to ask for an xray to see if there is something wrong. Surely he can't deny you that . . .?

If nothing/something shows up there, how about trying physiotherapy or massages by a place that is EXPERIENCED in dealing with MS. We have a free clinic here for MS massages, and most of our "other" licensed massage therapy personnel have to do practicum time at the free clinic to ensure they know how to manipulate someone with MS. This is important.

Spinal lesions are sneaky on a MRI. If they are small, they often don't even show up. If they are big, you KNOW it . . . cause they most often wreak havoc in many obvious ways. Knowing whether you have spinal lesions or not is not going to change anything anyway. You either do or don't, and there is no drug you can take that helps spinal lesions in any significant way anyway. Either way, whether you know you have them or not, they need to be careful when messing around with your back . . .

I have had back pain that is caused from my spinal lesions, and I know this only because the pain from them comes on/goes away just like any other MS attack symptoms. Also, I had xrays and underwent treatments that did not help in the slightest.

I have actually had MS "attacks", where the only symptom was this unrelenting "spinal headache" that radiated from my upper spinal cord. The feeling is fairly distinct, and the only thing that helped was doing NOTHING (laying down) most of the day. In every instance, the pain let up (like a light switch) when the inflammation did.

Good luck!

Cherie

i don't know what the problem might be but my first thought was that you should make an appt with your pcp.

not all problems are MS related. maybe there is something else going on and that problem is flaring your MS sx's.

mid back pain can sometimes mean kidney issues. i wonder if you have an infection?

i hate it when drs don't think outside the box and just brush off complaints and sx's as not being real. generally pain signifies something. pcp's/internists are usually better at the diagnostic problem solving issues.

please let us know how you are.

Thanks all for your replies. Today for whatever reason, the burning pain is lots better. Feeling pretty dizzy today though. There have been many times that I'm not sure if I'm in an exacerbation or not due to always having various daily symptoms. I'm thinking all this may be related to a relapse. Have plans to call my neuro Monday AM. We'll see what he says, I'll report back. Usually neither my PCP or neuro are much help. It has made me feel like it's a waste of time and energy to call them.

I know I should look into getting a different neuro and probably PCP. The neuro I've been seeing the past 8 years is recommended by the NMSS and well known to the field, but is nearing retirement. He's an hour away from me too. I wish there was an MS Specialist closer, but sadly, only regular neurologists. Sorry, got off topic there a bit and was typing what I was thinking. Oh, how I hate all of this!

i'm sorry desinie.
maybe it is time to find more responsive drs.
a good internist is worth their weight in gold.

my dr always takes me seriously and tries to either help me or refer me to someone who can.

some neuros are very good. you might try asking around or call some of your local hospitals for referrals. if you hear a name mentioned more than once that's a good sign.

Today the burning is mostly at my bladder area and lower back. I'll call my PCP in the morning and see about getting a urinalysis. I think it's probably best to rule out a UTI first. Things used to be so easy, with figuring out what was what. As I've said in the bladder spasms thread, I've felt like I've had a bladder infections a bunch of times before but the results came back negative. And vice versa, I've just had an increase of MS symptoms before and then found I'd had a UTI. I absolutely hate not being able to figure out what's what anymore. ( I thought there was a "pulling out your hair" smilie, couldn't find it so please insert here lol)

Finally had the urinalysis done today. Hopefully tomorrow will find out the results. ( I'll call my PCP) The burning pain in my bladder is off and on. My spasticity has been increased a lot lately too. Depending on whether or not I have a UTI, the next step I guess is to call my neuro if no UTI. All of this just absolutely sucks! I so miss the old me. I think that the emotional aspect of MS can be just as hard on us as the physical.