When have I seen enough doctors for symptoms

Posted by dgarris3 @dgarris3, Sep 22 10:15am

Hi, thank you in advance for reading my post. I am a 53 yr old female who has been experiencing constant movement and instability in my left side from my neck to my left hip. I also get a lot of heaviness in my shoulders. This makes it very difficult to walk or even sit up for very long. I have had extensive testing including MRIs, CT scans, Ultrasounds, 2 spinal taps, various blood panels for neurological and autoimmune disorders, and genetic testing. I’ve exhausted all avenues for an answer locally seeing multiple neurosurgeons, neurologists, rheumatologists, orthopedics and physiatrists. I’ve been to U of M where the neurologist told me I needed a specialist but didn’t know what kind. I then went to Cleveland Clinic and seen general neurologist, spine center, rheumatologist and movement disorder neurologist. All of my tests are either normal or not pointing to anything conclusive. For example, I have 3 herniated discs that abut the cord but no impingement, I have low lying cerebellum tonsils but no chiari, I have a low positive ANA Autoimmune test but all specific panels are negative, rheumatology says no autoimmune, I have oligoclonal bands in my blood and spinal fluid, neurologist says that means nothing and he’s 98% sure I do not have a neurological disorder. Ive had genetic testing for autoimmune and connective tissue disorders, all negative. I’ve been in physical therapy for over a year. There’s improvement but this is not gone. Cleveland Clinic has diagnosed me with Functional Neurological Disorder (FND) so I’m seeing neurophysiology, talking to a counselor who specializes in FND and am signed up for a 1 week intensive therapy program. These symptoms started after a heart ablation and/or covid vaccine. I can’t say either of these things contributed to this, and that’s not really my concern. I’ve calculated the cost and to date between me and my insurance over $600,000 has been spent trying to diagnose this. My question is when can I feel comfortable that I’ve done enough testing? Mentally I’m exhausted… I read articles about people pursuing a diagnosis for years but I honestly have nowhere else to go. I did apply 3 times with Mayo in Rochester but my application was rejected all 3 times with an explanation that there’s nothing more they can add. Thank you for your feedback.

Interested in more discussions like this? Go to the Just Want to Talk group.

@dgarris3, searching for a diagnosis is so exhausting and costly in both terms of money, energy, time lost and so much more. I can understand your reaching out to an online community as you search for a diagnosis. While fellow patients cannot diagnosis, we can help support you as you continue your quest.

It sounds like you've been to some of the top medical professionals in the country. This would explain why Mayo Clinic suggested there was nothing they could add. Mayo physician experts likely reviewed your case carefully with their colleagues. Their review led them to determine that Mayo Clinic cannot offer any further treatment for you at this time. Mayo’s goal is to provide the best care each patient needs, but does not want you to incur additional costs for evaluation or travel if there is not care to offer that is different from what you’re already receiving.

Since you are currently exploring Functional Neurological Disorder (FND), you might appreciate reviewing these FND discussions:
– Functional Neurological Disorder: https://connect.mayoclinic.org/discussion/functional-neurological-disorder/
– FND / Conversion Disorder: https://connect.mayoclinic.org/discussion/fnd-conversion-disorder/
– Year Long Progression of Neurological Symptoms. Exhausted. Angry.: https://connect.mayoclinic.org/discussion/year-long-progression-of-neurological-symptoms-exhausted-angry/

I'd like to return to your question: When does one know when they've seen enough doctors? @sherwood06 @rwinney @jenniferhunter may have some thoughts about that.

@dgarris3, it sounds hopeful that you have an upcoming appointment with neurophysiology, talking to a counselor who specializes in FND and are signed up for a 1 week intensive therapy program. What will help you feel comfortable that you've done enough testing and left no stone unturned?

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Thank you for your reply Colleen. What will help me feel comfortable that I’ve done enough testing… I guess for a doctor to tell me this is definitely what’s causing your symptoms, and here’s what to do to manage it. I keep trying to assure myself that FND is what’s going on but there’s always that doubt. On the other hand, I don’t know what else could be tested LOL. I’m not a doctor so I don’t know all the tests available but I sure have learned how complex the medical field is and have a greater appreciation for all that work in the medical field.

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@dgarris3

Thank you for your reply Colleen. What will help me feel comfortable that I’ve done enough testing… I guess for a doctor to tell me this is definitely what’s causing your symptoms, and here’s what to do to manage it. I keep trying to assure myself that FND is what’s going on but there’s always that doubt. On the other hand, I don’t know what else could be tested LOL. I’m not a doctor so I don’t know all the tests available but I sure have learned how complex the medical field is and have a greater appreciation for all that work in the medical field.

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@dgarris3 Your first statement actually sounds a bit like myself:
"I am a 53 yr old female who has been experiencing constant movement and instability in my left side from my neck to my left hip. I also get a lot of heaviness in my shoulders. This makes it very difficult to walk or even sit up for very long."

and because you talked about consults with spine specialists, it may be worth looking at the possibility of something like thoracic outlet syndrome which is most often missed and misdiagnosed by doctors.

I believe that patients with spine injuries like a whiplash may have more instances of TOS because TOS can be caused at the same time a spine injury happens. It does cause heaviness and fatigue in the shoulders and arms, and compresses the blood and nerve supply in the shoulder in various places. I have TOS that was misdiagnosed for a few years, and my hands used to turn blue and purple and get cold because circulation was compromised.

This is something that a neurologist should consider, but if you have an over whelming amount of medical data for a doctor to digest, they can easily pursue a alternate path. Sometimes things need to be excluded. TOS can be diagnosed by measuring altered blood flow with various positions of raising the arms. I have had Doppler studies that showed this, and doctors take my pulse either in the wrist or listen in my neck, then raise my arms and have me turn my head, and it stops my pulse completely. This happens because of muscle tightness or injury/scar tissue in various places between the rib cage and collar bone area where the entire bundle (called the brachial plexus) passes through on the way to the arms.

At Mayo, they actually put tiny blood pressure cuffs on my fingers and measured change in blood pressure there with raising my arms. The best treatment of TOS is most often physical therapy. Since you described bulging spinal discs, if you were describing a cervical disc in your neck, then I would ask if you have had an event like a whiplash or other injury that affected your neck?

My pattern is what you describe. My neck is tighter on the left side, and the tightness pulls from my neck through my rib cage to my pelvis and actually pulls the left side forward throwing my pelvis out of whack. That causes the left side of my lower back to ache (telling me this has happened), and then I see my physical therapist or I do some things she showed me on how to get my pelvis leveled out. That side of my body is just tighter, and I work on stretching it out to keep it aligned and reduce any pain. If my pelvis is really off, I get easily fatigued with walking and low back pain. My rib cage doesn't move as much on that side either, so I work to loosen that.

You may be interested in a couple of links, first a great article that describes TOS and why it is hard to diagnose, and the second our discussion on myofascial release which is what my therapist does to treat my TOS and it works. It is something I need to keep working on so I don't allow my body to tighten up again. The key is getting a therapist trained in the John Barnes methods of MFR. There is a provider search on http://mfrtherapists.com/
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

The great thing about MFR is that you don't need to know exactly what is wrong to be treated. Many problems occur from overly tight muscle and fascia, and loosening that up allows better body movement and re-hydration of tissues as well as possibly releasing entrapped nerves by loosening up what may be compressing them.

Have any of your doctors suggested or tested for possible Thoracic Outlet Syndrome? If you find a good physical therapist, they may be able to provide some answers.

REPLY
@jenniferhunter

@dgarris3 Your first statement actually sounds a bit like myself:
"I am a 53 yr old female who has been experiencing constant movement and instability in my left side from my neck to my left hip. I also get a lot of heaviness in my shoulders. This makes it very difficult to walk or even sit up for very long."

and because you talked about consults with spine specialists, it may be worth looking at the possibility of something like thoracic outlet syndrome which is most often missed and misdiagnosed by doctors.

I believe that patients with spine injuries like a whiplash may have more instances of TOS because TOS can be caused at the same time a spine injury happens. It does cause heaviness and fatigue in the shoulders and arms, and compresses the blood and nerve supply in the shoulder in various places. I have TOS that was misdiagnosed for a few years, and my hands used to turn blue and purple and get cold because circulation was compromised.

This is something that a neurologist should consider, but if you have an over whelming amount of medical data for a doctor to digest, they can easily pursue a alternate path. Sometimes things need to be excluded. TOS can be diagnosed by measuring altered blood flow with various positions of raising the arms. I have had Doppler studies that showed this, and doctors take my pulse either in the wrist or listen in my neck, then raise my arms and have me turn my head, and it stops my pulse completely. This happens because of muscle tightness or injury/scar tissue in various places between the rib cage and collar bone area where the entire bundle (called the brachial plexus) passes through on the way to the arms.

At Mayo, they actually put tiny blood pressure cuffs on my fingers and measured change in blood pressure there with raising my arms. The best treatment of TOS is most often physical therapy. Since you described bulging spinal discs, if you were describing a cervical disc in your neck, then I would ask if you have had an event like a whiplash or other injury that affected your neck?

My pattern is what you describe. My neck is tighter on the left side, and the tightness pulls from my neck through my rib cage to my pelvis and actually pulls the left side forward throwing my pelvis out of whack. That causes the left side of my lower back to ache (telling me this has happened), and then I see my physical therapist or I do some things she showed me on how to get my pelvis leveled out. That side of my body is just tighter, and I work on stretching it out to keep it aligned and reduce any pain. If my pelvis is really off, I get easily fatigued with walking and low back pain. My rib cage doesn't move as much on that side either, so I work to loosen that.

You may be interested in a couple of links, first a great article that describes TOS and why it is hard to diagnose, and the second our discussion on myofascial release which is what my therapist does to treat my TOS and it works. It is something I need to keep working on so I don't allow my body to tighten up again. The key is getting a therapist trained in the John Barnes methods of MFR. There is a provider search on http://mfrtherapists.com/
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

The great thing about MFR is that you don't need to know exactly what is wrong to be treated. Many problems occur from overly tight muscle and fascia, and loosening that up allows better body movement and re-hydration of tissues as well as possibly releasing entrapped nerves by loosening up what may be compressing them.

Have any of your doctors suggested or tested for possible Thoracic Outlet Syndrome? If you find a good physical therapist, they may be able to provide some answers.

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Thank you Jennifer. No, nobody has mentioned Thoracic Outlet Syndrome to me. I’ve been getting deep tissue massages which help some. I’ve used your link and found a therapist who does MFR. I’ve left a message for them. Thank you very much. This really sound like my symptoms. I’ll still pursue FND treatment too. Anything that will get me back to normal.

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Hello @dgarris3, I'm a52 year old female who has encountered a very similar experience as you and I asked the same questions of myself and my family for about 3 years –
"what do I do now?"
"should I find yet another specialist?"
"are doctors doing their best with what they know?"
"why has Mayo Clinic turned me down?"
"is it that Mayo can't help me more than my current doctors?"
"have I come to a dead end and have to learn to live with this?"

You have certainly done your due diligence and been to the best places and have advocated for yourself. I understand and have empathy for you knowing how confusing it can be when you hope a test proves a big conclusive diagnosis but comes out normal, inconclusive or shows minor things that should not make you feel this way. I have experienced all of it.

I'm not sure if this can help you or not, but my turning point was about 3 years ago when I discovered that Mayo Clinic offered a pain rehabilitation center. I found it while watching a video from Dr. Sletten of the Mayo Clinic presenting on Central Sensitization Syndrome (CSS). I was leaning toward CSS being my main problem. My underlying diagnoses consisted of multiple neurological causes (migraine, neuropathy, neuralgias) which I understood (like your FND), but I had weird heightened sensitivities and pain from things that should not cause me pain or affect me. My sensory system was all screwed up and overreactive. I knew this because medications and all the treatments like infusions, ablations, steroid injections, etc. were not helping. If anything, my symptoms increased. I had weakness, burning, shocking pain and inability to do simple things like hold a plate of food or stand up to brush my teeth.

If you have not watched Dr. Sletten's video yet, I recommend watching it. Perhaps many parts will resonate with you about your journey. Here it is:

Central Sensitization Syndrome by Dr. Sletten of the Mayo Clinic, FL –

It is quite possible your heart ablation or having COVID contributed to an upregulation of your central nervous system, as you will learn how from Dr. Sletten. Our CNS is really our main computer system, like the internet of our bodies. Strange, but true. I never gave it a thought prior to having a need to understand. I look forward to your response, after watching.

I'm really sorry you're on this unsettling journey, but rest assured you are not alone. Please remember to give yourself grace along the way as the fight is exhausting. You're doing a great job! I like that you're next move is speaking to a counselor that specializes in FND, and you are going to a one week clinic. What will that clinic consist of, therapies and such?

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Hi Rachel. Thank you for your response. The clinic is called The Recovery Project in Lansing MI. The program I am attending is specifically for FND. This is a five day program that consists of neuro physical therapy and cognitive behavioral therapy. From what I understand, the focus is to retrain the neuro pathways to function properly again and/or to desensitize the focus on the symptoms. It seems very similar to the approach for Central Sensitization Syndrome in the video you provided. The video was very informative, and helped me to understand better what is going on with my body. Thank you very much.

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@dgarris3

Hi Rachel. Thank you for your response. The clinic is called The Recovery Project in Lansing MI. The program I am attending is specifically for FND. This is a five day program that consists of neuro physical therapy and cognitive behavioral therapy. From what I understand, the focus is to retrain the neuro pathways to function properly again and/or to desensitize the focus on the symptoms. It seems very similar to the approach for Central Sensitization Syndrome in the video you provided. The video was very informative, and helped me to understand better what is going on with my body. Thank you very much.

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@dgarris3 You're welcome! Thank you for sharing information on the Functional Nerve Disorder clinic you're going to. It sounds promising.

You asked, "when can I feel comfortable that I've done enough testing?". It's very difficult, especially if the diagnosis isn't one you want to accept, or feel makes sense.

You certainly sound as though you've exhausted many options by going to specialists of major teaching hospitals and having a plethora of testing. I was denied being seen at Mayo, too. I understand how you feel.

Perhaps going to the Recovery Project FND program will bring you some clarity. When will you be attending the clinic?

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@rwinney

@dgarris3 You're welcome! Thank you for sharing information on the Functional Nerve Disorder clinic you're going to. It sounds promising.

You asked, "when can I feel comfortable that I've done enough testing?". It's very difficult, especially if the diagnosis isn't one you want to accept, or feel makes sense.

You certainly sound as though you've exhausted many options by going to specialists of major teaching hospitals and having a plethora of testing. I was denied being seen at Mayo, too. I understand how you feel.

Perhaps going to the Recovery Project FND program will bring you some clarity. When will you be attending the clinic?

Jump to this post

I'm attending in Jan 2023. In the interim, I'm meeting weekly with a counselor who specializes in FND, and I'm going to water aerobics 4 times a week. I've exhausted all of my PT through insurance, so going about this the most affordable way I can. I just keep getting this doubt that maybe it's something else. Unfortunately with all the testing I've had done I don't know if there's anything left to look for. It scares me that maybe the covid vaccine triggered this since my symptoms started 3 days after the 1st shot and then progressed into an unimaginable course of severe muscle movement, spasms, twitching and burning. It's been a very hard road. I'm trying to stay positive!

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