Connect
Looking for answers. No diagnosis yet. What next?
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??
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
@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.
Thanks Mary. She feels so defeated and doesn't know how much longer she can endure this. Looking for answers.............
Curt
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?
-
Like -
Helpful -
Hug
1 Reaction@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.
No but I will look into it. Thank you!
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?
-
Like -
Helpful -
Hug
2 ReactionsColleen,
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
-
Like -
Helpful -
Hug
2 ReactionsColleen,
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
Have they tried a nerve block? It is short term but it will give enormous relief and off it is CRPS will help confirm.
CRPS can be diagnosed that way especially if there is NO nerve damage.