albiet
@albiet
@albiet
Posts: 124
Joined: Mar 03, 2019
Help asking doctor if this is small fiber neuropathy or something else
- HELP please. im going to a neurologist that deals specifically with neuropathy. i had seen him in march and he took a bunch of blood work and nothing came up. he wanted to put me on either neurontin or lyrica and i said i’d prefer not at that time.
i dont know if whats going on is from small fiber or something else. please read my background and help me figure out what to ask. he is very detailed and i have to be very short and specific.
my back ground .10 years ago i was tested and told i had small fiber neuropathy. background – i had major burning, pain , tingling and insomnia in 1990 and 97. both lasted 1-2years and finally subsided. my main drugs have been immipramine or immipramine and cymbalta. i had a car accident in 2003 and had back issues (herniations in cervical, thoracic )along with pain in 2003 and again in 2009 which is when i was told i had sfn but could not find the cause.. i had been doing ok until early 2018. i started getting chest pain in march 2018 and also some limited strange tingling on my right arm and leg . the chest pains went away after about 6 months. i saw a cardiologist who took extensive tests and ruled out my heart.. i didnt really feel the tingling much until july of 20018 right after i got back from africa. as the months went on i also started getting a cloudiness in my head that comes and goes. i get a dryness/feeling pulling of skin/muscles. my legs started to really tingle constantly in november 2018 and not long after my arms started feeling that also. ny feet started to feel some numbness(not totally numb but feels different(need help in describing better) i also then noticed that my teeth started chattering slighlty (by slighlty i mean i feel it but hard to see but i feel like im constantly chopping) the other thing i started getting is tinnitus.
im basically they cant find anything so it must be sfn. (i recently also went to ms dr who told me its not m/s)
what questions or tests can i ask the dr? does anyone else with sfn get the head cloudiness, tinnitus, teeth chattering?
thank you all in advance
It appears that some people have tinnitus and neuropathy as I found this on the site: https://connect.mayoclinic.org/discussion/ear-tinnitus-and-pain-with-neuropathy/
I'm sure I read/saw somewhere that they ARE related. Perhaps in a video that was recently posted with the doctor doing a presentation on SFN???? (Albeit – if you can find that video, I highly recommend it!)
As for the rest of the symptoms – it's possible there are multiple things all going on at once and the symptoms are not related…
I would identify the 3 – 5 loudest/most frequent sensations or issues and talk to the doctor about those.
I can't help but believe that they can be related as I started to experience them both at the same time.
albiet
@albiet
@albiet
Posts: 124
Joined: Mar 03, 2019
Hi @albeit
I did a very quick search for relationship between SFN and tinnitus. The only thing I found was tinnitus and SFN as a result of chemotherapy.
I also have tinnitus, but it preceded the SFN.
Tinnitus is usually caused by hearing loss. The brain manufactures sounds, because of the lack of input. That's why when people get hearing aids, the tinnitus is often reduced.
I'm pretty sure my hearing loss/tinnitus is caused by too much loud rock'n roll back in the day.
Also, by definition, PN is a disease of the peripheral nervous system. Problems with hearing, chattering teeth, and foggy thinking all would involve the central nervous system, so I think PN is an unlikely cause. However, as we all know, this is a strange disease, so I wouldn't bet on that.
Don't try to come up with your own diagnosis. Just tell the neurologist all your important symptoms, but try not to overwhelm him/her with every or short lived symptoms you can think of.
The frustration you feel is understandable. It would be helpful if you understood that the medical providers are also frustrated, and often can't come up with an answer to everything. As an example, my SFN is idiopathic, which means unknown cause. I know how it feels.
Jeff
jeff,
@artscaping @jeffrapp, @johnbishop, @rwinney how does you guys deal with the mental issues on this. im having a hard time staying focused. i reak=lize that there are others with much worse things, but all i can think about is my pyhsical problems and what drs to go to.
John, Volunteer Mentor
@johnbishop
@johnbishop
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Joined: Mar 22, 2016
jeff,
@artscaping @jeffrapp, @johnbishop, @rwinney how does you guys deal with the mental issues on this. im having a hard time staying focused. i reak=lize that there are others with much worse things, but all i can think about is my pyhsical problems and what drs to go to.
@albiet, by mental issues do you mean foggy thinking or confusion? That may be a side effect of the medication you are taking. I only have numbness with my PN so do not take any medications but I have had times where I was pretty down mentally due to the neuropathy. What has helped me is just trying to take things one day at a time and focus on things that make me happy – not that I'm always able to do that but I make an attempt.
There is a book by Norman Doidge, M.D. – "The Brain's Way of Healing" that talks about a way to train the brain (my words) to help reduce or remove chronic pain. I started reading it but never finished and gave it to a friend. The chapters I did read made a lot of sense. He has a website with some frequently asked questions that may be helpful – http://www.normandoidge.com/?page_id=1052
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albiet
@albiet
@albiet
Posts: 124
Joined: Mar 03, 2019
@albiet, by mental issues do you mean foggy thinking or confusion? That may be a side effect of the medication you are taking. I only have numbness with my PN so do not take any medications but I have had times where I was pretty down mentally due to the neuropathy. What has helped me is just trying to take things one day at a time and focus on things that make me happy – not that I'm always able to do that but I make an attempt.
There is a book by Norman Doidge, M.D. – "The Brain's Way of Healing" that talks about a way to train the brain (my words) to help reduce or remove chronic pain. I started reading it but never finished and gave it to a friend. The chapters I did read made a lot of sense. He has a website with some frequently asked questions that may be helpful – http://www.normandoidge.com/?page_id=1052
thank you john. btw does anyone use klonipan here. it wad been helping my buzzing and sleep but seem to need much more that i initially used so curious if anyone else uses it.
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jeffrapp
@jeffrapp
@jeffrapp
Posts: 108
Joined: May 29, 2019
jeff,
@artscaping @jeffrapp, @johnbishop, @rwinney how does you guys deal with the mental issues on this. im having a hard time staying focused. i reak=lize that there are others with much worse things, but all i can think about is my pyhsical problems and what drs to go to.
It certainly is hard not to obsess about this. Not only is it painful, it's also unpredictable. Plus, it's common to worry about what the future will bring.
There are a number of medications, primarily anti-depressants, that are commonly prescribed for PN. They not only address issues of anxiety and depression, but also seem to reduce the pain independently of their psychological effects. It may take some experimenting to find the right one. Your PCP can prescribe these, although seeing a psychiatrist or therapist certainly wouldn't be a bad idea.
Don't try to direct your own treatment too much. Let your PCP be the one to decide who to go to next.
Staying active and socially engaged is also helpful, as are techniques such as meditation. Many are discussed on this forum.
Be as positive as you can be. Worrying and questioning why this happened to you will never be helpful. With the passage of time, you will likely get better at dealing with it.
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rwinney
@rwinney
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Joined: Apr 28, 2019
jeff,
@artscaping @jeffrapp, @johnbishop, @rwinney how does you guys deal with the mental issues on this. im having a hard time staying focused. i reak=lize that there are others with much worse things, but all i can think about is my pyhsical problems and what drs to go to.
For me, talking and writing about it here on this forum, and with friends and family, helps. Im hoping just by communicating your fears and concerns has helped some. The worse thing we can do is allow ourselves to be trapped in our feelings. We're already trapped in our bodies. I occasionally make that mistake and it backfires on both myself and my family. This is a huge learning curve for most so try not to be too hard on yourself. You are not alone and you are justified in your feelings.
Rachel
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rwinney
@rwinney
@rwinney
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thank you john. btw does anyone use klonipan here. it wad been helping my buzzing and sleep but seem to need much more that i initially used so curious if anyone else uses it.
I have not heard of that medication. I get flares of vibrations/buzzing. Have been in hands, feet and behind thigh. I honestly feel…when they come, they come, regardless of any of the meds I am on. Sadly.
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Jim, Volunteer Mentor
@jimhd
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thank you john. btw does anyone use klonipan here. it wad been helping my buzzing and sleep but seem to need much more that i initially used so curious if anyone else uses it.
I've been taking 1mg of Klonopin for nearly 13 years, which, I suppose, is a low dose than many take. I take enough other meds for depression, tachycardia, arthritis and neuropathy that it would be a challenge to figure out which was doing what.
Before my MRI yesterday I took Klonopin and a muscle relaxer, then they gave me a miniscule dose of Xanax. It might have helped me relax but it didn't alter my thinking.
The one thing I think about is the cumulative effects of meds. Many of them warn about cns suppression, and several warn of the possibility of serotonin syndrome. So, I keep a close eye on the signs of those things.
Jim
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Chris Trout, Volunteer Mentor
@artscaping
@artscaping
Posts: 1643
Joined: Jul 11, 2017
jeff,
@artscaping @jeffrapp, @johnbishop, @rwinney how does you guys deal with the mental issues on this. im having a hard time staying focused. i reak=lize that there are others with much worse things, but all i can think about is my pyhsical problems and what drs to go to.
@albiet, @jeffrapp, @johnbishop, @rwinney Good evening group…..Oh my goodness, we all struggle. The small task of responding to your inquiry is a building block for my positive emotional condition and level of acceptance of my physical condition. Discover others to help, find a way to contribute. Acknowledge and accept the incurability of neuropathy. And then build upon that foundation with a focus on quality of life.
I practice mindful meditation, daily yoga and will do anything BUT miss my MFR (myofascial release) treatment every week. Knowing that you are loved is so enriching. I am going to jump out to the end of the diving board here and attach a photo of Amelia (age – 3 1/2 months) and me, (age 77 and 8 months). Notice how important a month or even a 1/2 month is when we begin this journey and how little it means at this end. Find a bit of joy every day. Chris
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Jim, Volunteer Mentor
@jimhd
@jimhd
Posts: 2206
Joined: Aug 10, 2016
@albiet, @jeffrapp, @johnbishop, @rwinney Good evening group…..Oh my goodness, we all struggle. The small task of responding to your inquiry is a building block for my positive emotional condition and level of acceptance of my physical condition. Discover others to help, find a way to contribute. Acknowledge and accept the incurability of neuropathy. And then build upon that foundation with a focus on quality of life.
I practice mindful meditation, daily yoga and will do anything BUT miss my MFR (myofascial release) treatment every week. Knowing that you are loved is so enriching. I am going to jump out to the end of the diving board here and attach a photo of Amelia (age – 3 1/2 months) and me, (age 77 and 8 months). Notice how important a month or even a 1/2 month is when we begin this journey and how little it means at this end. Find a bit of joy every day. Chris
Our daughter is coming for Thanksgiving, and we're looking forward to seeing our 3 month old granddaughter and her two year old sister. It'll be nice to see our daughter and her husband, too, but I suspect that the baby will have lots of attention.
Jim
Chris Trout, Volunteer Mentor
@artscaping
@artscaping
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Joined: Jul 11, 2017
Our daughter is coming for Thanksgiving, and we're looking forward to seeing our 3 month old granddaughter and her two year old sister. It'll be nice to see our daughter and her husband, too, but I suspect that the baby will have lots of attention.
Jim
@jmhday Those little ones melt your heart so quickly. Enjoy the moments. Be happy, be safe. Chris
rwinney
@rwinney
@rwinney
Posts: 1629
Joined: Apr 28, 2019
@albiet, @jeffrapp, @johnbishop, @rwinney Good evening group…..Oh my goodness, we all struggle. The small task of responding to your inquiry is a building block for my positive emotional condition and level of acceptance of my physical condition. Discover others to help, find a way to contribute. Acknowledge and accept the incurability of neuropathy. And then build upon that foundation with a focus on quality of life.
I practice mindful meditation, daily yoga and will do anything BUT miss my MFR (myofascial release) treatment every week. Knowing that you are loved is so enriching. I am going to jump out to the end of the diving board here and attach a photo of Amelia (age – 3 1/2 months) and me, (age 77 and 8 months). Notice how important a month or even a 1/2 month is when we begin this journey and how little it means at this end. Find a bit of joy every day. Chris
Oh Chris, you steal my heart every chance you get! Beautiful.
Rachel
rwinney
@rwinney
@rwinney
Posts: 1629
Joined: Apr 28, 2019
Hi @jager5210, I ran the protocol supplements by my doctor who ran them by the Mayo pharmacist and he only commented on thinking the Omega 3 and 6 oils were high but didn't say much else. I'm no expert but everything I've read says B12 is generally safe at any dosage. It is always wise to run supplements by your doctor in case you have a condition that a high B12 dosage may have an adverse affect on you. The liquid B12 product hasn't been available for quite awhile now so I have been using a substitute – Seeking Health | Active B12 Lozenge with L-5 MTHF 1000 mcg tablet. It does have a warning for pregnant women and children.
I may be wrong but the Consumer Labs article seems to be written to a healthy person taking vitamins vs. a person who is using therapeutic level dosages to help with a condition. The one vitamin I really worry about is B6 because high levels of it are toxic and can cause neuropathy or make it worse. A lot of multivitamins have high levels of B6.
Here are a couple of links that provide more info:
Mayo Clnic – Vitamin B-12
— https://www.mayoclinic.org/drugs-supplements-vitamin-b12/art-20363663
APha – Recommending OTC vitamin B12 (a little old from 2012)
— https://www.pharmacist.com/recommending-otc-vitamin-b12
Hi John!
A couple of thoughts for you this morning…
I'm curious your take on the FB Protocol 525 plan. How long have they been touting "this plan is coming" and how do they plan on achieving such consolidation of vitamins, minerals and supplements? They are not pharmacists or Drs, correct? Who recreates for them? This has been on my mind a while now and because I'm not on FB, I may be limited in my knowledge.
Last and most important thought… your new photo is hannnndsome!!!
I read along the way of your weight loss. Congratulations to you sir!
Rachel
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John, Volunteer Mentor
@johnbishop
@johnbishop
Posts: 7519
Joined: Mar 22, 2016
Hi John!
A couple of thoughts for you this morning…
I'm curious your take on the FB Protocol 525 plan. How long have they been touting "this plan is coming" and how do they plan on achieving such consolidation of vitamins, minerals and supplements? They are not pharmacists or Drs, correct? Who recreates for them? This has been on my mind a while now and because I'm not on FB, I may be limited in my knowledge.
Last and most important thought… your new photo is hannnndsome!!!
I read along the way of your weight loss. Congratulations to you sir!
Rachel
Hi Rachel – Good question. The 525 has been in the works for awhile. They are working with a pharmacy company on putting it together and getting it approved. Not sure of all the details. I am looking forward to taking fewer pills and the cost should be about the same.
Aw…thanks for the kind words on the photo Rachel. Our marketing manager made me come into the office to take a current photo which I'm guessing is for a newsletter to let customers know that I am retiring at the end of the year. Fortunate to have had 2 careers and retiring for the second time after 21 years with this company at the ripe young age of 76. I am still working on the weight loss as I need to get down another 20 lbs or so to get to the weight I was at when my wife and I were married in 1966.
@albiet
thank you for your help. the only thing that currently helps is klonopin, haveover what use to work no longer does. i pill would put me to sleep and id findmyself good the next few days. last night i too 5 mg to get back to sleep(i do this one every 2 weeks just to give me a day o f relief. 1 pill used to work so i gues my body hass built up against itl.im sure that not a good thing and sicne im running out of it, probably will need to stop that. does anyone here take klonipan to help wth their symptoms.i f\or year i was on only imipramine and cymbalta. my sleep was good but always felt tired.earlier this uear was told to get off cymbalta as my arm ws twitching alot eventually twithing stopped, buy not sure it was the cymbalta. the negative about the cymbalta ist his symtptoms came on while i was on it (200 mg immipramine and 3o cymbalta – the tired ness and start of arm movement involintary, legs buzzing but i had been on for years.
cymbalta, so not sure if i should talk to dr about getting of remeron and going back to cymbalta . i have fear of nerotin and lyrica.
please help