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cindy66
@cindy66

Posts: 2
Joined: Dec 30, 2018

Coming to Mayo

Posted by @cindy66, Dec 29, 2018

For about 4 years I have had a lot of different health problems with no diagnosis of anything. I started by having numbness, tingling and burning in my hands and arms. Symptoms to follow were unsteadiness, forgetfulness, vision problems that would come and go. In Jan 2017 I was admitted to the hospital with what was to be thought a stroke. I couldn’t think right, my left side of my face drooped, swallowing was a little difficult. When given test to feel if I had sensation in legs and arms, I barely felt anything except pressure. I left with some mention of MS, but no test were done. Only heart tests. Instructions to follow up with my neurologist. When I went, he blew off the MS and said I was having migraines that were affected by my central nervous system. I was having headaches on a daily basis, but not what I had experienced before. Not the debilitating pain. He started doing Botox. Did it for 3 months but I didn’t feel much change. August 28, 2018 i fad a pain that started in my right foot. Since has spread to both feet and ankles. I have a pretty high pain tolerance, but this is absolutely the very worst pain. It has gotten so bad that I use a Cain to walk, very unsteady. Pain started as stabbing pain and now is constant pain in toes and ankles. I have had nerve conduction testing and small nerve testing—both were fine. I have had MRI and Cat Scans with no lesions. I absolutely cannot do any more of this. I have no life anymore. My Drs here just shake it off saying they have nothing more they can do. I made an apt at Mayo and go in Jan. I am excited that they will help me and nervous that they won’t find anything wrong.

REPLY

My 27 yr old daughter is going through a similar situation….her hands are completely numb….the Drs here in Minot have diagnosed her with polyneuropathy….no known cause and there's nothing they can do for her….we are anxiously awaiting for an appt at Mayo….she was approved…just the waiting now….hoping she keeps the hope and faith to go on….very frustrating for her as she has 2 small boys… She can't even open a can of soup….very sad.

@6969

My 27 yr old daughter is going through a similar situation….her hands are completely numb….the Drs here in Minot have diagnosed her with polyneuropathy….no known cause and there's nothing they can do for her….we are anxiously awaiting for an appt at Mayo….she was approved…just the waiting now….hoping she keeps the hope and faith to go on….very frustrating for her as she has 2 small boys… She can't even open a can of soup….very sad.

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@6969
Hi there,
Neuropathy is miserable for sure. I’ve had it for 30 years. Believed to have been caused from long term Anticonvulsant use. Started on the bottom of my feet and still slowly climbing upward to just past my waist.
They had me on the maximum dose on Neurontin which didn’t help. Lyrica was awful for me. I filled a complaint with the FDA. After that they included muscle damage/weakness to the side effects. I have a friend that claims it really helps her. Hoping for the best. Good luck at Mayo, they are a good lot.
Jake

Welcome to Connect @cindy66,

I’m glad to hear that you will be seen at Mayo Clinic. I’m tagging @johnbishop who is Mentor for the Neuropathy group on Connect, https://connect.mayoclinic.org/group/neuropathy/ as he may have some more insight.
Is the pain accompanied by any other symptoms such as swelling or numbness? How are you managing at present?

@cindy66, I would like to add my welcome along with @kanaazpereira and other members here on Connect. I'm glad to hear you have an appointment soon at Rochester Mayo Clinic. The doctors and specialists in each area work as a team to help diagnose patients with difficult to diagnose health conditions so I'm sure you will be in good hands and hopefully they will help you come up with a treatment plan. Here are a few videos that may be helpful if you are a first time visitor to Mayo Clinic.

Map of downtown Rochester Accomodations:
http://318commons.com/main/wp-content/uploads/2015/03/Dowtown-subway-and-skyway-map.pdf

Mayo Clinic Patient Visitor Guide
https://www.mayoclinic.org/patient-visitor-guide

Mayo Building – Mayo Clinic Patient Video Guide – Minnesota – YouTube

@jakedduck1

@6969
Hi there,
Neuropathy is miserable for sure. I’ve had it for 30 years. Believed to have been caused from long term Anticonvulsant use. Started on the bottom of my feet and still slowly climbing upward to just past my waist.
They had me on the maximum dose on Neurontin which didn’t help. Lyrica was awful for me. I filled a complaint with the FDA. After that they included muscle damage/weakness to the side effects. I have a friend that claims it really helps her. Hoping for the best. Good luck at Mayo, they are a good lot.
Jake

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Thank you💙

@6969

Thank you💙

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North Dakota, Burrrrr!!!!
I get cold in California,
I would perish for sure.
Keep warm
Jake

@kanaazpereira

Welcome to Connect @cindy66,

I’m glad to hear that you will be seen at Mayo Clinic. I’m tagging @johnbishop who is Mentor for the Neuropathy group on Connect, https://connect.mayoclinic.org/group/neuropathy/ as he may have some more insight.
Is the pain accompanied by any other symptoms such as swelling or numbness? How are you managing at present?

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Thank you. It is accompanied by swelling, numbness, burning, it feels like I am walking on broken feet. I have been given everything for the pain or what my Drs. believed would help. I was on a LARGE dosage of Gabapentin with no relief at all. over the counter pain meds, Cymbalta, Topamax, and nothing touched it. I am on Hydrocodone which I hate to be on and it is the only thing that helps a little, but doesn't alleviate all the pain. It just progressively is getting worse.

Hi Cindy66, did you go to MAYO yet? I have had horrible foot pain for years. I would always tell doctors the same thing, it feels like I’m walking on broken bones. This past September something new was going on. Finally did an ultrasound of my feet after I told the Dr I suspected Morton’s Neuroma. I do have that in both feel along with fluid in all metatarsal joints. After that I tried injections, orthotics, anti inflammatory cream, etc and I can still barely walk besides around the house using Oofo flip flops. He said he believes I have a systemic issue that is probably causing this to be worse than it should be. I know this of course since I’ve had horrible foot pain for years. I also have other health issues. My MAYO appointment is in a few weeks. They don’t have a podiatry type specialty, but hopefully finding out the autoimmune side will help determine if I need surgery on the neuromas. I will post again to let you know the outcome. I can relate to how frustrating and miserable it is to not be able to find out why you can’t walk.

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