1. < Neuropathy

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??

Interested in more discussions like this? Go to the Neuropathy Support Group.

Moderator
Amanda Roe | @amandajro | Dec 11, 2020

Hello @healthy01 and welcome to Mayo Clinic Connect. I see you've been a member for some time so just wanted to welcome you to posting and to this discussion!

REPLY
Faithwalker007 (Renee) | @faithwalker007 | Dec 11, 2020
In reply to @jesfactsmon "@curtj Curt, my wife who has neuropathy in her feet/ankles is also ultra sensitive and even..." + (show)
@jesfactsmon

@curtj
Curt, my wife who has neuropathy in her feet/ankles is also ultra sensitive and even allergic to most drugs. The only things that help the extreme bouts of pain are MJ (marijuana) and kratom, a leaf from SE Asia that can produce opiate-like qualities. And the kratom makes her so relaxed and out of it (sometimes for a whole day from just one dose) that she prefers the MJ. Meanwhile, in the quest for longer term pain relief she is experimenting with taking a supplement called PEA (Palmitoylethanolamide) which has a few studies where it has helped people with pain but jury is still out for my wife. Another member, @elizm , has had good success with it. Her profile page has her posts where she discusses it. Another thing my wife has been taking is a product called Theracurmin (supposedly a super curcumin) for inflammation. Inflammation causes long term bodily damage in pain sufferers. She is guardedly thinking that it has helped her so far. Like many here on Connect she has tried many things looking for relief and is still on the hunt after 6 years. In your wife's case I find it a hopeful sign that they have ruled out peripheral neuropathy. PN is usually intractable and chronic with no cure for most. But I know you guys would love to at least have a diagnosis. It's so frustrating to be in pain limbo with no answers. My heart goes out to you in a big way and I hope you are able to find answers and more importantly, relief for your wife's horrid pain. Best, Hank

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Hank,
Kratom sounds powerful. Scary.

REPLY
the1aborigine | @the1aborigine | Mar 22, 2021

Neuropathic disability in southern New Hampshire, went to Dartmouth-Hitchcock, similar experience. To Lehey in Burlington, no help. Finally received diagnostic help with the head of neurology at Brigham and Women's in Boston.

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Moderator
Amanda Roe | @amandajro | Mar 22, 2021

Hello @the1aborigine and welcome to Mayo Clinic Connect. Thanks for joining the conversation on neuropathy. To make sure I understand, can you share a little bit more about your neuropathic disability and the care you've found with the head of Neurology at Bringham? This will also allow for more members to connect with you about their experiences and/or questions they may have.

Also, you mention a similar experience. Can you share more?

REPLY
parasitemom | @parasitemom | May 21, 2021

My daughter has 8/10 pain in her head and face. But, what is MOST disturbing is the worm-like movements around her mouth-- Under- the -skin- movements that ripple, which she has interpreted as parasites moving around both sides of the face, then going to the brain. Cysticercosis is a tapeworm infection that affects the brain, head, muscle and other tissues. Yes, it is extremely rare at less than 1000 cases per year. She believes to the core this is what she has. 2 Drs. believe her, but are not willing to do the excision to cut them out. Every other Dr thinks she has delusional parasitosis, and thinks she needs to be on anti-psychotics. I am of the opinion that she has these parasites, yet Ivermectin and Albendazole have not gotten rid of these creatures. I am an RN, and am convinced this is what she has had for 2 years. IV Dilaudid given in the ER last week took her head pain from a 10 only to a 5. Her only relief is alcohol, which is so disturbing since she already has a fatty liver. Referrals to neurologists have been denied by at least 4 Drs. Nobody wants to deal with this nightmarish condition. Help!!
REPLY
1 reply
parasitemom | @parasitemom | May 21, 2021

Not sure why my native plant picture showed up! Its truly a "prickly" problem! May I try again to show you the extent of her problems? I can't upload the video that shows the wormlike movements, but this is one day when her eye was swollen shut, and the movements, seen easily with the naked eye, were around her face and right eye.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | May 21, 2021
In reply to @parasitemom "Not sure why my native plant picture showed up! Its truly a "prickly" problem! May I..." + (show)
@parasitemom

Not sure why my native plant picture showed up! Its truly a "prickly" problem! May I try again to show you the extent of her problems? I can't upload the video that shows the wormlike movements, but this is one day when her eye was swollen shut, and the movements, seen easily with the naked eye, were around her face and right eye.

Jump to this post

Hello @parasitemom, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I can't imagine how difficult this is for you and your daughter to deal with, especially when 2 doctors agree with you but aren't willing to help. Here's some information I found on Cysticercosis from Mayo Clinic.

Tapeworm infection - Symptoms and causes - Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/tapeworm/symptoms-causes/syc-20378174
Test ID: CYSTS -- Cysticercosis Antibody, IgG, Serum: https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/65872

Have you thought about getting a second opinion or seeking help at a major teaching hospital or health facility like Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The
contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

REPLY
pollysparrow | @pollysparrow | Jun 3, 2021

GO TO MAYO PLEASE I DID ALSO HAVE YOUR WIFE CHECKED FOR HEMOCHROMEMATOIS HER FERRITIN LEVEL HAD SOME OF HER SAME ISSUES WORTH A TRY BARB BAKER

REPLY
Lorraine | @lmill7 | Jun 3, 2021
In reply to @parasitemom "My daughter has 8/10 pain in her head and face. But, what is MOST disturbing is..." + (show)
@parasitemom

My daughter has 8/10 pain in her head and face. But, what is MOST disturbing is the worm-like movements around her mouth-- Under- the -skin- movements that ripple, which she has interpreted as parasites moving around both sides of the face, then going to the brain. Cysticercosis is a tapeworm infection that affects the brain, head, muscle and other tissues. Yes, it is extremely rare at less than 1000 cases per year. She believes to the core this is what she has. 2 Drs. believe her, but are not willing to do the excision to cut them out. Every other Dr thinks she has delusional parasitosis, and thinks she needs to be on anti-psychotics. I am of the opinion that she has these parasites, yet Ivermectin and Albendazole have not gotten rid of these creatures. I am an RN, and am convinced this is what she has had for 2 years. IV Dilaudid given in the ER last week took her head pain from a 10 only to a 5. Her only relief is alcohol, which is so disturbing since she already has a fatty liver. Referrals to neurologists have been denied by at least 4 Drs. Nobody wants to deal with this nightmarish condition. Help!!

Jump to this post

I thought I would just add what I KNOW n u can use the info. I’ve had these same symptoms with degeneration in my neck. Nerves compress. My face would contort, sometimes numb. My eye would close n my mouth will turn down like I’m having a stroke. After my neck surgery my fusion broke n I have uncontrolled fascia n muscle twitches n fasculations. It’s small fiber neuropathy from my central nervous system responding like I had an infection. When my second surgery went bad th body reacts. Unfortunately my military surgeon refused to talk or treat me n everything went south. I hope any of this helps you n your daughter. Look up info in th Nat’l Institute of Health too. Exact symptoms n build a timeline. This is how I educated myself.
Prayer n Good Luck

REPLY
taml | @taml | Mar 26, 2022

So sorry to hear what is going on with your wife. It seems to be identical to everything I've been going through for months. Even though my timing seems to correlate with pain starting with 1st 2 Moderna vaccines, the became super severe immediately after booster. Perhaps I shouldn't have mentioned this to do tors because recently saw Pain specialist and 1st neurologist. No one does any tests. Even though seems to be worsening daily throughout whole spine. They now just look at old tests and films and say, well there is nothing there!
Maybe you can ask this question in future appointments. I've seen Myelitis found after found in MRIs causing paralysis. Then treatments for that can completely reverse paralysis. Myelitis I believe is when nerve covering disintegrated. Perhaps this pain is a more non-MRI visible Myelitis. Myelitis is in a 1864 medical dictionary. I'm sure they found this without MRIs in 1864. Please see of this treatment can help with this constant pain. I believe a similar treatment is done when fungus is found in spine. Which both are said to cause permanent damage if not treated ASAP.
Hoping you find a great doctor with great answers ASAP. Please keep posting if any answers found. I cannot even find a doctor to check Spinal fluid . Praying for you!
Thanks for sharing

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