Looking for answers. No diagnosis yet. What next?

Posted by curtj @curtj, Nov 19, 2020

My wife has been in so much pain for the last eight months and no one seems to be able to figure it out. She has had two MRI’s, 2 CT Scans, Lumbar puncture, EMG and Tilt Table (autonomic) testing, over 70 blood test (everything from lyme, MS, Gillian Barre and multiple other test and four skin biopsies. We started at Dartmouth Medical with the majority of test and biopsies were sent to Mayo. We switched to Brighams Women’s in Boston because our experience with Dartmouth was horrible with the Neurologist telling her (on two occasions that they may never find out what it is unless they did an autopsy. (Yes that is what he said) Needless to say we were able to get into Brighams and they did additional testing and all the results for the most part are negative. She has extreme intense burning in her mouth, chest, arms etc. and the pain migrates all over her body. She has been ruled out small fiber and large fiber neuropathy. She is ultra sensitive to medications and can’t tolerate Gabapentin, has issues with pediatric doses of Lyrica and has tried Xanax to help her sleep at night but can no longer take that because of side effects. Two questions I have:
1. The lab results indicated that the biopsy was taken on thigh and calf when in fact it was her wrist and arm above her elbow. Would the results be different when they indicated a different part of the body?
2. Would Mayo or John Hopkins look at all test results and notes without seeing her for a second opinion? With over 900 cases of Covid with 900 employees of Mayo, not interested in diving into the thicket of the pandemic.
We are desperate to find out what this is and how we can get her some safe relief. Anyone??

Liked by bustrbrwn22

@curtj She sounds like me. I can't tolerate any of those drugs either. Not even melatonin to sleep. No diagnosis for me either so I figure I am on my own. I take 3/4 of a hydrocodone 5-325 three times a day and that seems to make it bearable. I've taken that for 10 years with no side effects. Hoping she can tolerate the lowest dose of hydrocodone which does help me.

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Thanks Mary. She feels so defeated and doesn't know how much longer she can endure this. Looking for answers………….
Curt

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Has she been evaluated for CRPS, Complex Regional Pain Syndrome? Did she go to the dentist eight months ago or have surgery or an injury to her mouth?

Liked by sunnyflower

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@curtj……….I hope she finds the answer. I never did.. Got diagnosed with small fiber neuropathy, arthritis, fibromyalgia etc. All they can do for me (and maybe her) is pain management.

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@faithwalker007

Has she been evaluated for CRPS, Complex Regional Pain Syndrome? Did she go to the dentist eight months ago or have surgery or an injury to her mouth?

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No but I will look into it. Thank you!

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Hi @curtj, I changed the title of your discussion and added it to the Brain & Nervous System group (https://connect.mayoclinic.org/group/brain-and-nerve-diseases/) as well as the Neuropathy group. I did this because it appears that her symptoms are leading the investigations to the issue being neurological in nature.

In your quest for answers, I would not rule out Mayo Clinic because of the recent news. Not all 900 staff who are currently in quarantine have COVID-19. If a staff member has had potential exposure to the virus they are expected to quarantine until it is proven that they are negative.
– All staff reporting to work on campus are expected to adhere to a thorough screening program.
– Staff who develop symptoms consistent with COVID-19 do not work until they have a negative COVID-19 test and any indicated clinical evaluation.
– Staff with symptoms of illness work with our Occupational Health experts to help ensure they receive the care they need and follow appropriate work restrictions.

You can read more in today's media release:
– Media statement: It’s safe for patients to come to Mayo Clinic https://newsnetwork.mayoclinic.org/discussion/media-statement-regarding-additional-restrictions-to-address-covid-19-surge-in-minnesota/

A virtual first visit may be an option for your wife. I recommend that you inquire. Here is the contact information: http://mayocl.in/1mtmR63

Do you have copies of all the test results and reports?

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Colleen,
We are reassembling the data to have as a package on her case. We are trying to get an electronic copy to forward but seem to have a few hiccups and hoops to navigate. Thank you for your response.
Curt

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Colleen,
We finally go the results back and had a consult with the neurologist at Brigham's Women's Hospital yesterday. All test results were negative and it was determined that she does not have small or large fiber neuropathy. However her pain continues to be severe and we have her scheduled with a pain doctor tomorrow to see if we can get that under control until we can figure this out. I am wondering since she is on Lyrica for nerve pain, if that is making it worse or if she should come off from it at the very least. I am looking into CRPS to see if we can find a path to diagnosis. Thoughts?
Curt

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Have they tried a nerve block? It is short term but it will give enormous relief and off it is CRPS will help confirm.

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CRPS can be diagnosed that way especially if there is NO nerve damage.

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I pretty much have the same problem! I seen 8-10 specialists! And no one can give me an answer! What is causing the pain? I’m looking into going to Mayo Clinic cause I can’t take the pain anymore! Good luck! I wish your wife the best!🙏

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@curtj Has your wife been checked for Erythromelagia? I may have the spelling wrong here, but it is essentially intense burning!!!!! There are posts about this disease somewhere in the Neuropathy section here on Mayo connect. Maybe jimhd can help you find those discussions on that illness. I don't know where they are. LoriRenee1

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@curtj Forgot to also say that it sounds that they just listed the wrong body part of your wife's biopsy, but probably biopsy results would be the same wherever they did the biopsy. LoriRenee1

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Erythromelalgia was not considered because the areas effected by this disease are more centralized in the legs and hands. Her pain has been in the mouth, arms and neck predominantly. The results came back from the ENG and tilt table as well as another skin biopsy were all negative for small and large fiber neuropathy. We were referred to a pain doctor (first at Brigham's but had two from Dartmouth that were not able to resolve) The Pain Doctor felt that it was time to have a treatment plan and further test would probably not result in a diagnosis. He put her on Amitriptyline at a low dose and it has improved her condition to the point that she is now getting some sleep. (interrupted but at least some sleep) and her pain level has gone down (improved). His comments were that if we could at least get her pain down and sleep level/quality increased then maybe her system would be more normalized and it could potentially go away. Her diagnosis is Centralized Pain.
Curt

Liked by lorirenee1

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@curtj

Erythromelalgia was not considered because the areas effected by this disease are more centralized in the legs and hands. Her pain has been in the mouth, arms and neck predominantly. The results came back from the ENG and tilt table as well as another skin biopsy were all negative for small and large fiber neuropathy. We were referred to a pain doctor (first at Brigham's but had two from Dartmouth that were not able to resolve) The Pain Doctor felt that it was time to have a treatment plan and further test would probably not result in a diagnosis. He put her on Amitriptyline at a low dose and it has improved her condition to the point that she is now getting some sleep. (interrupted but at least some sleep) and her pain level has gone down (improved). His comments were that if we could at least get her pain down and sleep level/quality increased then maybe her system would be more normalized and it could potentially go away. Her diagnosis is Centralized Pain.
Curt

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@curtj Curt, I understand now why she doesn't have Erythromelalgia. Thanks for clarifying. With a diagnosis of Central Sensitization, you might want to study Dr. Norman Doidge on you tube, and hear all his teachings on Neuro plasticity. If she has energy, she really should try to lower her pain through consistent use of neuro plastic pain strategies. You might also want to consider buying the Curable app for your phone or computer, that teaches various methodologies in dealing with pain. It is now on sale for about $50.00. It includes relaxation breathing techniques, "talking to your brain" methodologies in lowering pain, writing/journaling, science lessons to teach you about central sensitization and the neuro plastic brain, etc. I am so glad that sleep is beginning to help your wife, and her pain is lowering a bit. All my best to you, LoriRenee1

Liked by Hank

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