My doctor doesn't find a spine problem; what else could it be?

Posted by dougs72 @dougs72, Jun 12 3:53pm

About 5 years ago 2 events happened:
1) I picked up a cooler and felt something rub together or shift in my lower right back/buttocks. The pain went away after being in bed a few days, but I had an odd sort of vibration feeling in the front of pelvic area.
2) 3 months later I came down hard on one side of my body while playing frisbee. This created a bad pain in lower right back and back of thigh. The leg pain went away for the most part, but the back pain and hip cramping, groin pull pain,nerve pain never did. Over the following 3 years I' had:
-2 lumbar MRIs- degenerative disc disease is only thing of note
-EMG- negative
- 2 epidurals with little to no effect.
-2 failed PT attempts
-2 otho Dr. and a neurosurgeon visits. They don't know what's wrong

3 months ago, It became really bad and then I reached down to my right to pick up a pick of paper on the floor, and bam, that shifting feeling again...and now, it never got better, especially the back of the leg pain while walking and groin pull pain. I decided to go to a new pain management Dr. who thinks it SI joint. 2 steroid shots later and it's a little better, but I still can't walk more than 10 steps without pain in my leg and back. I'm scheduled for lidocaine injection in the facet joint next week to rule that out, but I had that a couple years ago, and it didn't work. Also have another EMG scheduled next month.

Things that help with pain: Generally sitting forward somehow stretches the nerve compression, so that's tolerable, especially bending forward. That's about it.

I cannot twist to the right at all, without major back cramping/pain feeling, into my hip and back of thigh.

I'm crying all the time and fell helpless cause I cannot get an accurate diagnosis, and the tests are not showing things that would cause this. Also, I feel like there might be 2 things going on at once. It doesn't seem like piriformis, given sitting is ok, especially leaning on my left side.

I apologize for this long post, but man I'm struggling with this. My daughters wedding is in 2 months.

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@alisamichelle1092

Any autoimmunity in your family? Even small things like psoriasis.

I don't know if you mentioned in a previous post your age.

Are you familiar with dermatome maps? If not, you can find a million images of the map with a basic Google search.

All areas below the skull are connected to major nerve roots that are connected to the spinal cord, to the left and the right of the cord.

A lot of times you can look at the map and based on where your pain is, you can match it to a nerve root and vertebral level. This indicates nerve compression or displacement. If you then look at your radiology reports, if you see that particular disk is bulging or there is spondylosis, you can ask your doctor about it.

The crummy thing is that an MRI is a snapshot of one particular moment in time. I make it a point to push myself the before a scan. That way I'm in pain and inflamed. Staying away from anti-inflammatories for a couple of weeks before a scan helps too.

Something to consider: insurance companies have a long list of requirements that need to be met before they will pay for various therapies and treatments. Your doctor knows this. He might be running through these requirements to not only satisfy your insurance company, but also as a way to rule things out and reach a diagnosis. He's running a differential in his head. If yes here, then go here. If no here, then this is ruled out.

It's incredibly difficult to share all my knowledge in a forum. I have a ton of questions that make giving my thoughts difficult.

You obviously have osteoarthritis in your spine. Age related? You are probably irritating your back with basic and daily activities because there is weakness there. This is causing intermittent swelling that then presses on nerves which also get irritated and cranky. It becomes a vicious cycle.

OR you have an underlying inflammatory disease process going on and the wrong type of specialist is treating you based on the wrong differential to begin with.

Not very helpful, I'm sure. If nothing else, I hope the dermatome map opens up new dialog with your doctor.

It might be worth getting a new set of eyes on your case. A second opinion.

Last thought: in some people, Schmorl's nodes can cause pain. Especially if there is edema in the same area. That swelling is actually being caused by the node. Swelling=pain.

Keep me posted on how you're progressing. I'm sorry I can't make this easier for you.

It took from 1990 to 2022 before I was correctly diagnosed. In the meantime, a heck of a lot of irreversible damage has been done. I get it.

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Thanks! So I'm 51. I relatively no back issues until I lifted a cooler 5 years ago wrong (which this is connected to) and then came down with my weight on my right foot 3 months later. I don't think autoimmunity is at play here. My issue is now sitting in a chair over a computer all day for the last 3 months. It's not helping and it's effecting my neck and shoulders now. It's really hurts to stand and walk and I have no idea if doing those things will help or hurt my current nerve condition. 32 years is a long time to wait for a diagnosis. I can't imagine being in the pain I've been the last 3 months, for an extended period of time as it's brutal.

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@dougs72

Thanks! So I'm 51. I relatively no back issues until I lifted a cooler 5 years ago wrong (which this is connected to) and then came down with my weight on my right foot 3 months later. I don't think autoimmunity is at play here. My issue is now sitting in a chair over a computer all day for the last 3 months. It's not helping and it's effecting my neck and shoulders now. It's really hurts to stand and walk and I have no idea if doing those things will help or hurt my current nerve condition. 32 years is a long time to wait for a diagnosis. I can't imagine being in the pain I've been the last 3 months, for an extended period of time as it's brutal.

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Are you normally active?

Sitting is probably my least favorite activity. We haven't evolved to sit on chairs for long periods of time. Squatting like you'd imagine a "caveman" would is far more anatomically correct.

I think that you actually have a lot of arthritis in your back for a 51 year old. Which probably means that you aren't ever going to be pain free. But I do think you will improve.

Pain is the easiest part for me. I was very athletic growing up and not being able to move the way I want to, as well as the mobility issues are what I struggle with. And since my disease is progressive, I have to fight to keep the mobility I do have. Others with my disease do end up in wheelchairs or worse.

I hope you get some relief soon.

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@dougs72

yes, only a couple small hernias noted , but not the bad kind. They are not linked. At this point, I'm getting an abdomen CT scan next week, a hip xray, as that's been a few years since the last, an EMG on 7/11 (also been 3 + years since the last one) , and a shot next week to rule out facet joint syndrome. I'm also going to present the thoracic results at my next appt, to make sure there is no correlation.

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@dougs72

I am glad you are pursuing tests to get answers. Your cervical and thoracic spine could be the most impacted so it may be good for you to focus your efforts there. Especially if it is affecting your ability to stand, sit, walk. Good luck with all of your upcoming tests and getting answers.

https://www.physio-pedia.com/Thoracic_Back_Pain_Red_Flags
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My experience - and maybe some food for thought:

Many years ago while exercising on my Elliptical machine I experienced a sudden Pain. It turned out to be caused by a calcium buildup that for whatever the reason contacted a major nerve bundle. Ultimately, physical therapy worked my muscles in a way that resulted in separation of those two elements.

In the meantime the therapists taught me to use Transcutaneous Electrical Nerve Stimulation (TENS) as a method of blocking pain. I was shown how to set it up and where to place criss-crossed pads straddling my spine allowing me to walk without sensing the pain. Ultimately the physical therapy solved the core problem allowing me to wean myself off the TENS use.

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@alisamichelle1092

Are you normally active?

Sitting is probably my least favorite activity. We haven't evolved to sit on chairs for long periods of time. Squatting like you'd imagine a "caveman" would is far more anatomically correct.

I think that you actually have a lot of arthritis in your back for a 51 year old. Which probably means that you aren't ever going to be pain free. But I do think you will improve.

Pain is the easiest part for me. I was very athletic growing up and not being able to move the way I want to, as well as the mobility issues are what I struggle with. And since my disease is progressive, I have to fight to keep the mobility I do have. Others with my disease do end up in wheelchairs or worse.

I hope you get some relief soon.

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Thank you. My mom had a lot of arthritis. I just wish I had some stretches that I knew for sure would help me, but without knowing specifically what the issue is, it's hard to get those. Also, I would not sit behind my computer all day if my back and leg didn't hurt so much with this searing pain when I walk. I would try to fight through it and walk more and more each day, if I knew that it wouldn't hurt my condition or make it worse.

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I had similar issues caused by a hypermobile SI Joint. A Dr. I found, after 4 years and 6 Drs., who diagnosed the lax ligament that connects the pelvis with the spine. A procedure called prolotherapy fixed the ligament and the joint now only moves slightly out of place, an issue I can fix with 'knee to the chest' twice a day, or if needed.
The original issue had developed after a hip operation that left one leg shorter than the other. The SI Joint accommodated that with its hypermobility, but then caused issues including semi-dislocation of my leg when moved in a certain position. Prolotherapy turned on specific high levels of self-healing for the over stretched ligament.
I am old and was always very flexible and athletic. I believe the muscles held my hypermobile joints in place for a lot of years. Finding a DR. familiar with EDS and hypermobile joints is difficult but Mayo does know. It could be your issue. I felt the issue in my groin before I found the answer.

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@rjmtwit

I had similar issues caused by a hypermobile SI Joint. A Dr. I found, after 4 years and 6 Drs., who diagnosed the lax ligament that connects the pelvis with the spine. A procedure called prolotherapy fixed the ligament and the joint now only moves slightly out of place, an issue I can fix with 'knee to the chest' twice a day, or if needed.
The original issue had developed after a hip operation that left one leg shorter than the other. The SI Joint accommodated that with its hypermobility, but then caused issues including semi-dislocation of my leg when moved in a certain position. Prolotherapy turned on specific high levels of self-healing for the over stretched ligament.
I am old and was always very flexible and athletic. I believe the muscles held my hypermobile joints in place for a lot of years. Finding a DR. familiar with EDS and hypermobile joints is difficult but Mayo does know. It could be your issue. I felt the issue in my groin before I found the answer.

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interesting. Where is the Dr. who diagnosed this, and how did he determine the diagnosis? What were your symptoms with this issue, and which ligament was this as a lax ligament is a condition, not an actual ligament from my understanding. I'm looking for all sorts of options here.

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Dr. Newton is at Spine and Pain practice. You will hav3 to ask him about his process. He checked the movement of my spine. Symptoms ... I had gait issues and a pain in the groin. My leg would semi-dislocate when moved specific way. Pretty painful to get it back. No ... a lax ligament is a condition of ligaments that are overstretched and lost their strength. The name of the specific ligament that needed fixing I do not have anymore. It happened in 2017, but is s long ligament that connects the spine and the hip. The Dr. said I may need to have it redone and I think that wil be in the next year. I lie on the edge of the bed and drop a leg over the side. That is a stretch for this particular ligament. I can no longer feel the stretch opn that side although I feel the stretch if I do the other leg from the other side of the bed.
Not all Drs. support prolotherapy so .... and not many understand hyoermobile joints. I actually had one who slammed his plastic model of the pelvis and said ..."See, SI Joints don't move".
Find a Regenerative Medicine Dr. and have an evaluation from them. Good luck.

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PS.... an Orthopod who has a website at nashvilleprolotherapy.com has good explanation of ligaments. One thing he says is that the only way to diagnosis a 'lax'' ligament is to evaluate is physically, something most doctors no longer do what with all the pictures available.

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@JustinMcClanahan

@dougs72 - as you mentioned, I moved your new discussion and combined it with your original post in "Searching for a diagnosis and help" - https://connect.mayoclinic.org/discussion/searching-for-a-diagnosis-and-help/ - so members you've met and discussed with could see your new post as well.

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Hello- Is it appropriate in this forum to ask for Neurologist recommendations in a particular area of the US?

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