back pain update--advice on next step needed!--little help from spine specialist

[Maggie2015]

Hi, it's Maggie.

I've been posting about my chronic severe back pain for awhile now--it's what brought me to this board, which I love.

I had been to my neurologist and showed him where the pain was, and asked if it was spasticity, and he just shrugged and said, "hard to tell."

I went to my PCP, and he prescribed different muscle relaxers and an anti-inflammatory, but those didn’t help. He then referred me to a pain clinic, where they gave me Tramadol. That helped for awhile.

Then I called my neurologist again in desperation and his nurse called back to tell me I had a referral to a physician in their spine clinic, and I was so excited.

The appointment was June 4, and I went and the spine specialist evaluated me.

He said that I definitely had “drastically increased tone” or spasticity, and that is the cause of the pain.

However, he said that the source of the pain is not coming from my spine (based on MRIs of my spine, which have come up clear, and which I had done in early April, and copies of which have been sent to my PCP, neurologist, and the spine specialist).

The spine specialist said it's coming from my brain (which, as a person with MS, obviously comes up with lesions on all my MRIs, including the last one). He said he could not think of any cause of the spasticity in my back other than MS.

I wanted to say, well, um, DUH. I haven't had a stroke, nor do I have cerebral palsy. Let's see, I do happen to have MS, and have had it for five years, officially. And I have spasticity.

Do I need an MD to figure this out?

I'm sorry for the sarcasm. I am just reminded of what Sissy said recently of her pain, “does this mean after six years I no longer have MS?”

I did not think (except in my greatest moments of doubt, based on the lack of response from my neurologist) that the cause was other than MS, especially when the MRIs of my spine showed no other issues.

He said that because he was a “spine guy” and my spasticity is coming from my brain he could not help me. When I asked who could, he said I might want to see a different neurologist.

I feel like I am going crazy!!! My neurologist REFERRED me to the “spine guy.” They both work in the same top-ranked Neuroscience Facility in the United States.

At that point, my boyfriend (I feel so silly being 40 years old and using the term “boyfriend,” but I don’t know what else to say!) had an outburst. He basically said in a very aggressive tone that the spine doctor did not see my pain every day and that my neurologist didn’t either, but that he did, and that it was unbearable.

He said it had gone on far too long and it was too late for me to start over with a new neurologist, that they were a neuroscience center especially trained in MS, and that if the spine doctor could not help me than either he or my neurologist needed to find someone who could.

And the spine doctor said, “are you asking me to cure MS?”

And I said, “no, we’re just asking for help,” and I mentioned the suggestions I’d heard here, from trigger point injections to a Baclofen pump.

He said that he would “ask around” for doctors who might “do that sort of thing” and I asked if he would give me a referral and when and he said, “when I find one.”

And then he got up from his chair and said, “at least you’re not a stroke patient—this is how stroke patients with spasticity walk,” and he imitated what I guess he thinks is a typical stroke patient with spasticity.

I do not think this is good medical care, and that is an understatement.

On Monday, I’m going to call and ask if he has been able to give me a referral.

But I wanted to ask all of you: what kind of doctor can evaluate my back and figure out where to do 1. Trigger point injections; 2. Botox injections; and 3. If I might need a Baclofen pump!

I can research myself if the Center has this kind of doctor because based on his attitude I am concerned "the spine guy" won't follow up.

I apologize deeply because one of you may have told me what kind of doctor does this in the past, but I am so tired and I can’t find the post.

I also wanted to ask: I’ve gathered from several posts that some doctors let people take more than 80 mg of oral Baclofen.

I take 30 in the am, 20 in the afternoon, and 30 in the evening.

I was thinking of upping it on my own to 40 in the morning, 40 in the afternoon, and 40 in the evening, just to see if it will help get me through until I get a referral to someone who can help. I want to shower, make meals, tidy the house, grocery shop.

And oh, my sweet daughter. I want to go with her on walks in the woods. I want to take her swimming. I want to smile at her without masking excruciating pain.

I want not to groan and whimper in front of her. I want to get her breakfast without doing it bent at a 90 degree to a 45 degree angle. I want to look forward to picking her up from day camp instead of dreading it because it is easier to be in this kind of pain alone than in front of my girl.

Would it be dangerous to up it? I just can’t get help and I feel like I need to help myself. Not only do I hate the pain, but I hate what it’s doing to me and to those I love.

Please help if you can.

Maggie

[Tia1]

I am so sorry that you are going through this pain and lack of proper care from your doctors. I think you should call the neuro and tell him/her that the back specialist said it was from the MS and expect them to adjust or add to your medication.

I would NOT take more baclofen as it could affect your muscle tone in your entire body and make walking, holding up your head etc.

Get the report from this latest doctor and call the neuro.

[Sissy]

Hi sweet Maggie! Sissy here! Your boyfriend and my husband are on the same team! They see it and feel it with us! On top of my MS and I also have back problems for which I see a pain specialist. He has given me spinal blocks for several years. Before I was DX with the MS. They worked great because its a steroid injection. Which also helped the MS!!

I have had 2 back surgeries and 2 cancer surgeries (all between '87 and '88). So when I knew I had MS they just kept telling me "no you don't" !! It took 10 yrs of tests that didn't show anything before I finally found a Dr who said I think you have MS! I actually had my reg MD tell my husband it was all in my head!! After that (20 yrs) my husband fired him! The next week I had a new Dr and a DX!

Back pain is different than spasticity! I am taking 2800mg of gabapentin a day. but it works!

[jreagan70]

Hi Maggie:

I'll start with the easy part first. The protocol for baclofen is to take 80 mg in 4 divided doses of 20 mg each, not 3 of other amounts. The idea is to deliver a steadier, more even drug level throughout the day. You'll have to try it yourself to see if 4 doses rather than 3 works better for you.

Some neurologists do agree to have their patients take a higher level of baclofen. However, 1) their patients are doing it under medical supervision, and 2) it applies more to people who are already getting a pretty good amount of spasticity relief at 80 mg and a little higher dose gives them more relief. It doesn't apply so much to people who really aren't getting much benefit at all at the maximum dose. If 80 mg already isn't helping much, raising that dose often doesn't give any more relief and just increases side effects.

Ideally, you should be working with your neurologist -- or another neuro -- on this. If you have to try raising your dose on your own, there are a couple of things to be aware of. First, increasing the dose by 50% all at once is way too much too soon, especially when it's going to be 50% above the recommended maximum dose. There is some potential danger in that.

If you really want to do it on your own, don't add more than 20 mg a day, and break it into 10 mg spread out with the other doses. It might be better to first start by changing to 20 mg 4 times per day for a few days, per protocol. If you don't notice any improvement with 20 more mg, it's probably a good indication that a higher dose isn't going to work any better and might get you into trouble in other ways.

I appreciate that you're in a position where you need to help yourself. But upping the dose of a medication that already isn't helping at maximum recommended dose may not be helping. When your daughter finds you collapsed on the floor because your breathing muscles relaxed to the point you were having trouble breathing or your legs relaxed to the point they were no longer strong enough to hold you up, increasing your dose without medical supervision might not seem like such a good idea anymore.

The other thing to be aware of is that, by increasing your dose by yourself, you'll go through your prescription faster than normal. That could leave you uncovered -- with no baclofen at all -- when you run out because the pharmacist may not be able to refill your prescription until the next refill date. (That happened to me a couple of times with other meds.) The pharmacist isn't responsible for you running out because you didn't take the medication as prescribed. And your neurologist may or may not feel like bailing you out by approving an earlier refill.

The other issue is more complicated.

From your description, I think you can let the spinal specialist off the hook because it doesn't sound like he did anything wrong. It sounds like your neurologist made an improper referral that put both of you in a bad position.

Your neurologist would be able to tell by looking at your spinal MRIs that there's no physical reason why your spine would be involved in your back spasticity. So there was no medical reason to refer to you a spinal specialist.

And the spinal specialist -- being more of an orthopedist -- told it to you like it is. If there's no spinal reason for your pain, then your condition is outside the scope of his specialty. That being the case, there's nothing he can do for you and he's done.

What normally happens in that situation is that the specialist writes a report and sends the report and the patient back to the referring doctor. Why the spine specialist didn't just send you back to the neurologist is something only he can explain.

In your position, I wouldn't expect the spinal specialist to refer me to any other provider, and I wouldn't ask him to do something he already said he didn't want to do. Again, it's outside the scope of his specialty, so it isn't clear why he said he would find someone to refer you to. I do, though, think it speaks to the dynamic inside that medical center when he decided not to send you back to your neurologist, as would be expected.

The spinal guy isn't the problem. It isn't his fault that your neurologist referred you to him inappropriately. Being outside the scope of his practice, your pain isn't his fault or his responsibility. The problem is your neurologist. Apparently, he doesn't know what to do about your spasticity and pain and, in lieu of doing something in line with a spasticity protocol, he made an inappropriate referral to get you out of his office.

It doesn't matter that you're going to a special neuroscience center. They aren't doing the job for you, so it may be time to move on and find a new neurologist in a different clinic. Then you'll have someone to talk to about other possible spasticity meds or a baclofen pump. If your neuro were on the ball, he would already have brought it up.

Next, look for a physiatrist to help with your spasticity in other ways.

In addition, it sounds like your pain has a psychological component, as demonstrated by it not being as bad when you were distracted by other things. So if the pain clinic you went to isn't offering any psychological techniques for dealing with pain, it would be beneficial to start finding that kind of help on your own, with your therapist or another mental health professional who works with people with chronic pain.

[KatieAgain]

I am in shock. I don't take Baclofen, but I do have back problems not related to MS. Each and every single time, they have been handled by my Neurologist.

I am interested in the answers...I too am interested in who you should be referred to.

Back pain can be absolutely intolerable. My heart goes out to you.

BTW...the term boyfriend or girlfriend has no age limits anymore.

Hope you get to the right doctor and feel right as rain soon.

[Maggie2015]

thank you for your help for my "back ouch" as my daughter would say

Hi, it's Maggie. Thank you for writing me back about what my daughter calls my "back ouch."

THE END OF THIS POST HAS AN IMPORTANT APOLOGY TO EVERYONE HERE WITH MS WHO IS NOT ABLE TO WALK OR GO SWIMMING. Please read, because I was a jerk and I want very much to have the chance to make up for it.

KatieAgain, thank you for saying boyfriend/girlfriend doesn't have an age limit any more, and for telling me you know how bad back pain can be and that your neurologist has handled it.

Sissy, thank you for telling me that my boyfriend and your husband are on the same team! It sounds like your journey was far too long and terribly mishandled and I am so glad your husband has always believed in you and advocated for you! And thank you for mentioning spinal block injections from a pain specialist. God, any ideas for something that would work gives me HOPE!

Tia1, thank you for your recommendation to go back to my neuro and to be careful with the Baclofen!

And jreagan70, is it OK if I nickname you Tough Love? I say that without sarcasm at all, and with gratitude for your honesty and for your yanking me back down to earth. The image of my daughter finding me on the floor if I raised my Baclofen the way I was planning did the trick.

My neurologist is the one who put me on the 30 mg, 20 mg, then 30 mg.

Based on what you've said and what everyone else has said, I need to go back to my neuro for help and in the meantime find ANOTHER neuro stat, because my neuro either just doesn't care, is ignorant about this subject, or is altogether an uncaring idiot. I am leaning toward the last characterization.

Thank you, jreagan70, for being blunt about the spine guy. It does all come back to my neuro. And since he and the spine guy do work in the same prestigious center and since the spine guy did advise me to find another neuro, it seems to me that was him saying he knows my neuro is--well, an idiot. I wouldn't be surprised if my neuro hasn't done this in the past.

I just wish he hadn't asked me if I wanted him to cure MS. That seemed like an unnecessarily low blow. I know there's much more at stake here than my own feelings and how they might get hurt, but it set me back in terms of my state of mind and when I'm in this much pain my state of mind is what I've got.

Last, I want to apologize to everyone here who has MS and is not able to walk in the woods or go swimming, either alone or with their loved ones. I was having trouble sleeping last night and I remembered my post and I realized that I may have accidentally implied that to be a good mom I need to be able to go on walks in the woods and swim with my daughter. I want to say to everyone with MS, I am SO SORRY for those words. I was speaking from a point of privilege--it's been my good luck with MS these last 5 years that for almost all the time I've been able to do those things, but I have taken them for granted. I am grieving that loss and thinking that if I get help with my pain I'll have those activities back, but I want to say I know that I don't need to be able to walk in the woods and swim to be a good mom, or a good parent, and neither does any one of us. Please forgive me if it sounded like I was saying otherwise.

Maggie

[gwynnf]

Hi Maggie

Sounds like your keeping yourself pretty busy trying to solve this problem....all, it sounds, without the help of your docs correlating your care.

Thankfully, my docs share the same database and have, from what I can tell, "talked" to each other. Maybe not, but it would seem so.

The doc that I am seeing for my back pain/spasticity is the pain clinic/anesthesiologist. This particular pain clinic does not write prescriptions for narcotic pain medication....which I found interesting since I was referred to them for exactly that! This is the same doc that recommended we try trigger point injections. Do you have any follow up visits scheduled with the pain clinic doc?
I have also used Lidoderm patches which I got from a pain clinic doc as well.

I too went through years of trying to get my back pain dealt with. Years ago I had a spinal cord stimulator placed in my spine for pain control and it did work for almost 2 years and then just stopped working. It was great while it lasted. However, because of the components of the stimulator I was unable to have MRIs. At that particular time it was okay because I had run out of medications to help with he MS. I had 2 doses of Tysabri when it was first released before they took it off the market. I did have it removed and went back on Tysabri.

I too, at age 50, have a boyfriend. Neither one of us is interested in "legalizing" our relationship with a piece of paper.... so I refer to him as my SO (significant other) fiancé or even my "ubby" as I will never again have a hubby.

Good luck to you!

[trikajm]

CHRONIC BACK PAIN WITH MS

Hi Maggie,

I just wanted to say that no matter what don't stop looking for a doctor (specialist or not) to help manage your pain until you find one that you are happy with and makes your back pain tolerable and PLEASE don't settle for anything less.. It took me years to get my diagnosis and prior to that I was considered a "drug seeker" because I was asking for help for my Back Pain and no one would believe me and I was also told that "it the pain can't be as bad as you say it is because your MRI's aren't showing anything that would cause you this amount of pain"..I was also told at certain times that it was all in my head and or I was basically faking it either for attention or for drugs, not in those exact words of course, but I did get a hold of some doctors notes that said "possibly malingering"...

Mind you Maggie, I even went paralyzed 3 times on 3 separate occasions but yet "it was all in my head" WHAT REALLY?? Sorry to ramble it just gets so irritating as you know.

My husband was also telling these doctors that there were some days that I couldn't' even get out of my bed because of how bad my Back Pain was.

Now thank God I have a very nice PCP, a GREAT ophthalmologist and an o.k. neurologist, but I think I want to find a new one, he just doesn't come across like he could care less or not if you know what I mean, which I'm sure you do. By the way I might not have made a whole lot of sense here because I've also been having pretty bad cognitive issues lately but I tried to...

[rdmc]

I just wanted to chime in about Baclofen. My neuro would not prescribe more than 80 mgs per day, and it was divided into 3 doses, not quite sure now how much and when I took those doses.

Problem was, it didn't help my spasticity...so now I have a pump which does help my spasticity.

But the thing about Baclofen, as some others have said, you shouldn't be playing with the dose yourself. Baclofen withdrawal is very real, and too much of a jump in dose can also cause problems...so any change in baclofen dosage needs to be overseen by a Dr.

Even with the pump, the physiatrist only adjusts the dose at 10% levels, no more and mostly less than 10% at a time, and that dosage is in micrograms, not milligrams (1000 micrograms is 1 milligram.)

Someone else mentioned this but a physiatrist is a good place to go if you're having spasticity pain. My physiatrist's office is the most accommodating office I visit. The physiatrists and their staff are all wonderful.

Hope you get some relief.

[marti]

Back pain is always so tricky. Can you tell us how the spine doctor diagnosed the "increased tone or spasticity"? I have all kinds of back pain too. I'm sure most of us do. But I always wonder how they determine where it's coming from.

[gwynnf]

Hi (again) Maggie

This thread has a lot of people talking...and that is great!!

I was seeing a new neuro who I believe wasn't listening to me and I "tolerated" this until Bob reminded me that they (the docs) worked for me. I did find a new neuro and he is excellent. He listens to me ... even when I bring my list of questions! And he gives me answers to these questions and if he didn't have the answer he went and found one before I had even left the clinic. He even told me he wished more people advocated for themselves like I was doing.

I agree with the previous posts...keep looking until you are comfortable and have the answers you need. I was once told by a doctor that I couldn't possibly have MS as I was having pain and pain wasn't associated with MS!! That was over 20 years ago. I finally found a doctor at a pain clinic who listened to me. And yes, I too had been labeled as a drug seeker until I found this doctor who listened to me.

More days...maybe even better days are ahead.

[trikajm]

MS DOESN'T CAUSE PAIN

GWYNNF,

I can tell you that just over a year ago when I went to the emergency room because I couldn't get my back pain under control the doctor said "MS doesn't cause pain".. I literally couldn't believe what that doctor had just said. I have done a lot of research since I was diagnosed in November of 2012 after years of being either told that "there was nothing wrong with me" or insinuating that I was a "drug seeker" to them literally putting in their notes that I was a probable malingerer..

I've been seeing double and having left temple pain which I thought was probably MS related but what if it wasn't and it was an aneurism or something else? So I ended up in the emergency room on Sunday (which I did not want to do at all for obvious reasons) for the first time in over a year and was diagnosed with diplopia which is quite common with people with MS.

I was told to follow up with my ophthalmologist the very next morning (which I did), and he said that it was a start of a relapse of my MS.. I am having EXTREME memory loss right now as well as balance issues and fatigue and last but not least my pain has gotten much worse as well.

MY OPHTHALMOLOGIST SAYS THAT MY BRAIN IS WORKING TOO HARD TO JUST LOOK AT SOMETHING WITH MY EYES WHICH IN TURN IS CAUSING MY BRAIN A LOT OF STRESS SO IT IS LITERALLY EXHAUSTING MY BRAIN AND THAT’S WHY MY MEMORY ISN’T WORKING BECAUSE MY BRAIN AND MY EYES ARE WORKING AGAINST EACH OTHER RIGHT NOW.

I apologize for all of that being in caps but when I realized it, I didn't feel like retyping it all over again and wasn't sure how to correct it

Either way I keep wondering why doctors are not aware that MS can cause pain and I recently learned that MS is STILL considered a RARE DISEASE even though there are between 200-300 thousand people with MS in the United States..I guess it's still considered RARE because there are about 318.9 million people in the United States ..

That is NO EXCUSE IMO why WE (patients) should be treated the way some of us are because they (doctors) are not being educated enough on this darn disease!!

[Maggie2015]

update and response to marti's question and trikajm's post

Hi, it's Maggie.

Oh, thank you for saying better days are ahead.

I was in hot pursuit of answers to my chronic back pain, and then I found it was starting to lift just enough. It's still extremely uncomfortable and it is still very limiting, especially compared to where I was before. And there are a couple hours out of the day when it's back to excruciating.

I still have to keep the tens on constantly except when I'm showering or sleeping, but I CAN take a shower. I even shaved my legs (sorry if that's TMI).

I started Lyrica on May 26th and I think that might be what is helping! Nothing else has changed.

I can do light housework. I can make an uncomplicated meal (though it's hard, and I have to let the dishes soak overnight and do them the next day because making the meal exacerbates the pain, and I'm done).

I went grocery/odds and ends shopping for an hour and I made it. I barely got the bags in and the things that needed to be refrigerated in before I collapsed in pain, but I did it. And again, I just unpacked the bags later.

Before I couldn't stand up straight long enough to stay in a store more than 15 minutes, so I'd grab what I needed most and get the heck out of there.

So this is good news--not perfect, but good.

Because I can actually DO THINGS, I am trying to catch up on everything I HAVEN'T DONE in ages, and then I am going to start working again on finding a doctor who WILL take the pain seriously and WILL help, if there is more help to be had.

But I realized I didn't answer marti. marti, you asked how the spine guy evaluated my spasticity. I honestly don't know. He tested all my reflexes and felt the muscles in my arms, legs, and back. When he was done he said, "increased tone, etc." I know that's not a good answer, but that's what happened. It seems like other docs would be able to do THAT much!

And trikajm, you talked about encountering a doctor who said, "MS doesn't cause pain."

I have had that happen to me! It was when I was having my relapse in 2013 and I was in the hospital getting my IV steroid treatment (3 days). The bad "fiery circle" back pain flared up and I got to a point where I was writhing (as best I could with an IV in my arm) and whimpering.

The nurses were sympathetic but said that the attending doctor told them MS did not cause pain. This went on for about 2 hours, and then one nurse checked on me and said my elevated heart rate and something about my pupils were SIGNS of pain and that maybe the doctor would give me something.

He still refused. The nurse then went and got another nurse, who turned out to be the head nurse in the maternity ward, and her father had had MS. That nurse came to me and told me her father experienced bouts of terrible pain and she was going to go to the hospital administrator and have the hospital admin., herself, my nurse, and the attending doctor who said MS didn't cause pain have a meeting.

They met, and by that point the pain was so bad I could barely speak, but the nurses and the hospital admin. convinced the doctor to give me Diladid (I have no idea if I'm spelling that right) through an IV and have me administer the dosage myself.

And OMG, it changed EVERYTHING.

And after 1 night of it, it turned out that I'd underdosed myself and still taken care of the pain.

It was the nurses who stood up for me, and in particular the nurse whose father had MS.

I know there are articles--real research--that state MS causes pain. Maybe it would be a good idea to find one that is very recent and comes out of a prestigious institution and print it out and CARRY IT WITH US to our doctor's appointments.

I know we never know when we might end up in the ER or hospital, but we could put it in a place where it would be easily accessible for someone to bring it to us.

I think doctors have known for years that MS causes pain, so I don't understand the power of the myth that it doesn't, but apparently it still carries a lot of weight. We need to fight that!

When I have a chance, I will look into articles about this and post a link.

I just want to say thank you to all of you who have helped me through this, and please keep your fingers crossed for me that I continue to experience this bit of relief, and end up being able to get much more. I hope, I hope.

Maggie