This Is MS Multiple Sclerosis Community: Knowledge & Support

My MS was dx in December after being referred to a neuro by an orthopedist I had gone to for low back pain and hip pain I had been having for almost two years after stepping in a hole while walking and twisting my lower back. My question is, do any other's out there have continuous low back pain and intermittent hip joint pain due to MS? I have only seen my neuro three times. First for initial meeting and scheduling of MRI's, second time for DX of MS when he told me that every one has back pain and he gave me options of treatment for MS and the third time to give me RX for Betaseron. He did not seem willing to discuss or willing to address my back pain issue, but gave the indication that it was just a side effect of the MS. The back pain is making me crazy. It burns and hurts constantly to varying degrees. Sitting, standing or lying down for any period of time aggravate it. I have trouble falling asleep because the pain increases after laying down for more than 30 minutes. Once I am asleep I don't sleep more than 5 hours but wake up from the pain. Chiropractic treatments help somewhat temporarily. The most comfortable position I have found to rest is to kneel, stack pillows in front of me, sit back on my heels, bend at the waist and rest my weight on the pillows. I look like a frog ready to jump! I can only hold that position for about thirty minutes then my legs have gone to sleep. My other MS symptoms I believe are fairly mild. I have mild to moderate numbness/tingling in my right arm and hand, mild in my left and about the same in my right and left leg. my right leg is fairly weak and my foot sometimes drags. The Betaseron seems to have helped with the fatique.
I am wondering if others with MS have these same back pain symptoms and if it is not a "normal" symptom should I continue to pursue the cause of it?

RaniyLaine, I'm really sorry for what you've been going through, but it's obvious that while your neuro IS interested in treating your MS, he is clearly NOT interested in treating your low back pain, or anyone else's most likely.

Actually, many neurologists these days simply don't treat lumbar pain, unless they also specialize in pain management; it's just not what they became neurologists for, and lumbar pain in particular isn't usually very gratifying for them to treat .

What has been done to diagnose the cause of your back pain? Specifically, was a lumbar CT or MRI performed? (Plain film xrays aren't usually enough for someone in your situation.) If you haven't had the right kind of imaging done, then that's the first priority.

From your description of the stepping-into-a-hole injury, the subsequent painful symptoms that resulted and have persisted, and the postures you have to assume in order to get some relief, all sound typical of a significant lumbar injury, and definitely NOT anything caused by MS!

Bless your heart...I totally know what you're going through. And it sounds like your doctors haven't been much help at all yet. I've seen doctors get all excited by a flashy new diagnosis like MS, and forget to focus on the less-exciting problem the patient actually came in for, such as chronic lumbar pain, which really causes at least as much trouble and pain as does the flashy diagnosis that gets all the attention, if not more. ....


Speaking from wide personal and professional experience (but not as a doctor), I'd bet money that your back pain is in no way related to your MS, although the stress of constant pain and sleep deprivation can certainly make MS symptoms arise.

Go back to your primary care physician or the orthopedist, and insist on adequate diagnosis and treatment of your back pain. Do NOT let them blow you off with excuses like "everybody has back pain", or "it's probably from the MS"; no one should have to deal with the symptoms you've been having without a serious effort at help.

Meanwhile, hang in there!

I had back pain for the last six years. I think it was due to playing sports/golf and not stretching beforehand. I stood literally very crooked, hip jutting out. I went to chiroprators and they helped a little, but I never was completely free of the pain.

When I was diagonosed with MS last year, I started taking Avenox. Due to the severe side effects, I had to come off it. I began reading about Minocycline and how some of the stories were promising. So I began to taske 100 mgs twice daily.

One of the pleasant side effects of taking the anitbiotic is that it has antiflammatory properties. The back pain has cleared up. It does get stiff after playing nine holes but it is defintely a great improvement.

Is back pain and MS related? It may be something to look into. Does CNS play a role in all this? Hmmm.

I second the opinion that back pain should be treated adequately and that a neurologist is not the most appropriate doctor for this complaint.

I have had very good luck consulting my primary physician who has referred me to an excellent physiatrist and spine center. A dedicated and imaginative physical therapist can design exercise and stetching programs that are sensitive to MS limitations and that are still effective in strengthening the muscles that support the back.

I have also had some success with epidural and facet joint steroid injections in the lumbar area. These are also done by physiatrists and medical rehab MDs.

In my case, the opinion is that I have some structural spinal problems and some usual wear and tear, both of which are made worse by the spasticity of MS.

I still have some back pain but I do feel that I am getting good care and that I can address the problem with physical therapy.

good luck!
Vicki

Thank you, everyone, for your replies.
I did have a lower lumbar MRI on my lower back on my first trip to the orthopedic doctor and nothing significant was seen. That is why I was referred to a neuro. My chiropractor told me that often times an unenhanced MRI with the subject laying flat and not moving does not show any abnormalities. He is in agreement that there is something wrong, besides the MS. My husband had a lower back injury that did not show on his intitial MRI but did show when he was injected with "dye". After two unsuccessfull discectomy's, he is now disabled and unable to work and still dealing with back pain. I have a lot of the same symptoms that he had and some that he still has. We're quite a pair!! Surgery would NOT be a choice for me. I still work and will continue to until I am dragged off the floor. I work at a small county jail as a corrections officer. I have not disclosed that I have been diagnosed with MS and make 'lame' excuses for my mild limp and foot drag. I also work the graveyard shift so that I can stand, sit and walk when needed and do not have to deal with supervisors that might question my gait. I have been able to not let the MS or back pain interfere with my job performance, but I sure do get tired!
I will pursue the back pain issue after I get the last three MRI's paid for and hopefully get some relief.
Thanks again!

RainyLane,

Have you tried physical therapy? I also had low back pain (prior to being diagnosed) - the orthopedist sent me to physical therapy where I learned how to stretch and exercise the "core" section of my body. I was also experiencing weakness in my left leg with foot drop---again this was a couple of years before my diagnosis.

Since being diagnosed, I have kept with the exercise program. I have very little back pain, the foot drop is minimal if at all. But, I still have weakness in my leg. The muscles do not "fire" 100% in people with MS, so we must force them to do more work in order to keep the strength. Weight bearing exercise has been proven to work the best. So, my suggestion to you is get your primary care doctor to prescribe physical therapy. Learn where the weakness is ( you may be surprised - I thought mine was my leg when in fact it was mostly in my hip). Get on a program and stick with it. Don't expect miracles in a few weeks - remember we MSrs have to work a little harder for results. Don't get discouraged though - you will improve!

I was DXed on April 15 2004, of all days. And since that day, my most miserable and consistent symptoms have been stiffness and low back pain. On the day of my attack, the left half of my body went completely weak and my left eyed seemed to have a blind spot. I seemed to quickly recover and was able to lift weights and run the next day. I began to notice that every time I lifted, my back and neck would get extremely stiff and sore. I began to go to a Chiro. but he reallly didn't seem to help me much. I was beginning to feel a little better when I made the mistake of jumping out of the back of my pickup. (no it wasn't moving.) I ended up in the emergency room with a DX of sciatica. I had not had my first MRI yet so I had not been officially DXed with MS. My MRI and an Evoked Visuals test would eventually lead to that DX. I now take Neurontin, Baclofen and Copaxone and my back pain remains as bad as ever. Along with my back, my legs and arms are painful too. In all fairness, I currently do alot more than I did last summer which probably contributes to the increased pain and stiffness. I keep trying to get back to running and lifting but without much success. I go to a Chiro./Therapist who helps me with stretching and adjustments. I currently take 45mg. of Baclofen and 1200mg. of Neurontin daily.

I'll jump in on this one, and say I totally side with Flora and Sharon!!

I was almost going to write the EXACT same things Flora did, as a matter of fact! And as for physical therapy, as Sharon mentioned, I just started that myself, and although I was skeptical at first as to how well it might help my condition (because who knows how much of my symptoms is from fibro and how much from disc bulges, blah blah, is hard to know), but Man! I'm sold on physical therapy!!!

It is making a world of difference so far! That weakness and numbness, tingling, shooting pains, cramping (I have a lot of spasticity) etc. in my thighs, legs, ankles and feet and problems walking have decreased enormously, and lo and behold, all those problems in my arms AND my breathing difficulties (which I thought was the MS "hug") is really caused from the problems I have in my cervical spine!! Physical therapy for my back and neck has made a world of difference!

Deb