Its just been two weeks, could this be Small fiber neuropathy?

Posted by italapino @italapino, Sat, Feb 16 8:36pm

Hi all. I am new to the group and have on my journey of getting confirmation of SFN. All started tweeks ago. Started with mild pins and needles on hands and feet and lasted for 5 days. The next day my feet to knees and fingers to forearms felt sensitive to temperature and felt sunburned. The skin sensitivity has now spread to random and more places with intermittent burning. My hands and feet get cold and wet real quick now, I wake up with full on adrenaline with what feels like trembling, light winded quicker, noticeably dry eyes/mouth sometimes, my feet and hands more like ache/throb, today a pinky has been a little bit more stubburn. I saw a neuro last week and he said its nothing of a concern and its rare that neuropathy progresses that fast. Has everyone else had that fast of a progression in relation to your neuropathy? I'm getting a second opinion with Mayo in Arizona in a couple weeks.

A little background, January I had some bouts of non-rotational vertigo and developed tinnitus and both have since gone away. ENT ruled it as possible eustachian tube dysfunction. The meds I took for that were, sinus flushes, nasal spray (flonase), meclizine, and ativan. My first neurologist stated that these meds would not have caused what I am feeling now.

Liked by teetee7

Hello @italapino, Welcome to Mayo Clinic Connect. I have small fiber peripheral neuropathy. Some of your symptoms sound like small fiber neuropathy but I have no medical training or background and cannot give any advice on diagnosing conditions other than sharing my own personal experience. I'm glad to see you have already have an upcoming appointment at the Mayo Clinic Arizona Campus for a second opinion where you will be in good hands for coming up with a diagnosis and treatment plan. Mayo Clinic is very good at diagnosing and treating difficult to diagnose health conditions.

There is another active discussion on small fiber neuropathy where your post will have more visibility. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion so other members with small fiber neuropathy will see your post and be able to share their diagnosis and treatment.

Groups > Neuropathy > Small Fiber Neuropathy
https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-1/

In my personal experience with small fiber peripheral neuropathy, it started in the toes of both feet and progressed over the past 20+ years to the lower part of both legs when I decided to have it diagnosed in 2016. There wasn't an urgency on my part because I didn't have any pain. I only had the tingling and numbness symptoms. I'm really glad that you are taking the steps early to get a diagnosis and treatment plan.

@roch shared some great tips here on how to get off to a a best start with a new specialist in another discussion that may help you prepare for your upcoming Mayo appointment:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

I thought this link to Becoming a Patient at Mayo Clinic's Campus in Arizona might also be helpful:
https://www.mayoclinic.org/patient-visitor-guide/arizona/becoming-a-patient

Can you share an update with us on your diagnosis after your Mayo appointment?

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@johnbishop

Hello @italapino, Welcome to Mayo Clinic Connect. I have small fiber peripheral neuropathy. Some of your symptoms sound like small fiber neuropathy but I have no medical training or background and cannot give any advice on diagnosing conditions other than sharing my own personal experience. I'm glad to see you have already have an upcoming appointment at the Mayo Clinic Arizona Campus for a second opinion where you will be in good hands for coming up with a diagnosis and treatment plan. Mayo Clinic is very good at diagnosing and treating difficult to diagnose health conditions.

There is another active discussion on small fiber neuropathy where your post will have more visibility. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion so other members with small fiber neuropathy will see your post and be able to share their diagnosis and treatment.

Groups > Neuropathy > Small Fiber Neuropathy
https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-1/

In my personal experience with small fiber peripheral neuropathy, it started in the toes of both feet and progressed over the past 20+ years to the lower part of both legs when I decided to have it diagnosed in 2016. There wasn't an urgency on my part because I didn't have any pain. I only had the tingling and numbness symptoms. I'm really glad that you are taking the steps early to get a diagnosis and treatment plan.

@roch shared some great tips here on how to get off to a a best start with a new specialist in another discussion that may help you prepare for your upcoming Mayo appointment:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

I thought this link to Becoming a Patient at Mayo Clinic's Campus in Arizona might also be helpful:
https://www.mayoclinic.org/patient-visitor-guide/arizona/becoming-a-patient

Can you share an update with us on your diagnosis after your Mayo appointment?

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Thank you so much for all this information! Yes I will update upon diagnosis and visit after Mayo

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Hi @italapino. Welcome to Mayo Clinic Connect. I am relatively new here and have found this to be a wonderful place. You can read about other members experiences and informative links are posted all over this site. The members are very kind, helpful and caring. You will gain a lot of knowledge and it really does help to share and give members your support, as well.

I was diagnosed with severe SFN in 2015. My symptoms at that time were: pins/needles feeling in my hands, arms, feet and legs. (In 2011 I was diagnosed with Sciatica and Piriformis Syndrome – so, I knew what nerve pain felt like and how it travels). I would also get numbness in my fingers and forearms. What sparked my PM doctor to perform a Punch Biopsy for SFN, was an unusual symptom I had been noticing in addition to what I have mentioned – a change in the scent of my perspiration. It was really odd to me, as I had not changed my diet. The biopsies were sent out to Corinthian Laboratories and I received confirmation of severe SFN. (My Neurologist is who made my diagnosis – I had not seen a Neurologist prior to this time).

Since 2015, my SFN has progressed into more burning, stinging, numbness, skin sensitivity, etc. Sometimes it will get progressively worse, in other areas it stays the same.

I am a patient at the Mayo Clinic in AZ where you will be going. Like John said, the Physicians are excellent. You will really like them. I will be looking for your post on SFN. I wish you the best and days of less pain and discomfort.

(I haven't been able to post as much as I would like to, due to the rainy weather we have had here for over 2 weeks. I hope to post more real soon).

TeeTee

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Hi @italapino. I forgot to share that in 2017, I suddenly got hit with syncope (feeling faint, dizzy and actually fainting to the ground), loud locust sounds in both ears, balance issues, dry eyes, urinary problems and a few other weird symptoms. I wasn't sure if this was SFN related or something different.

The Mayo Clinic will help get to the bottom of what is going on with you. I am sorry to hear about the Neurologist not ordering tests to be done, with the symptoms you presented.

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@teetee7

Hi @italapino. I forgot to share that in 2017, I suddenly got hit with syncope (feeling faint, dizzy and actually fainting to the ground), loud locust sounds in both ears, balance issues, dry eyes, urinary problems and a few other weird symptoms. I wasn't sure if this was SFN related or something different.

The Mayo Clinic will help get to the bottom of what is going on with you. I am sorry to hear about the Neurologist not ordering tests to be done, with the symptoms you presented.

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Thank you! yes, I am very much anticipating this appointment. Thankfully its local and heard they are really great.

Hrm.. Given that I too had balance, dizzyness, and tinnitus just weeks before this started, I wonder if it is correlated. Thank you for sharing that.

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@teetee7

Hi @italapino. I forgot to share that in 2017, I suddenly got hit with syncope (feeling faint, dizzy and actually fainting to the ground), loud locust sounds in both ears, balance issues, dry eyes, urinary problems and a few other weird symptoms. I wasn't sure if this was SFN related or something different.

The Mayo Clinic will help get to the bottom of what is going on with you. I am sorry to hear about the Neurologist not ordering tests to be done, with the symptoms you presented.

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I have nerve damage in my ears, which causes tinnitus and hearing loss, nerve damage in my moisture producing system which causes dry eyes and dry mouth, peripheral neuropathy which causes balance issues, Small Fiber Neuropathy, and gastrointestinal neuropathy, and nerve damage in my bladder which causes inflammation (Interstitial Cystitis). All of this nerve damage is the result of my Immune System attacking the organs/systems of my body (primarily nerves).

Everything is connected, all of my problems are caused by my Immune System, which has gone amok.

Best wishes teetee7.

Regards, ElaineD

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@elained

I have nerve damage in my ears, which causes tinnitus and hearing loss, nerve damage in my moisture producing system which causes dry eyes and dry mouth, peripheral neuropathy which causes balance issues, Small Fiber Neuropathy, and gastrointestinal neuropathy, and nerve damage in my bladder which causes inflammation (Interstitial Cystitis). All of this nerve damage is the result of my Immune System attacking the organs/systems of my body (primarily nerves).

Everything is connected, all of my problems are caused by my Immune System, which has gone amok.

Best wishes teetee7.

Regards, ElaineD

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Thank you @elained . I apologize for missing your reply.

I've been having a very rough 3 weeks with my Autonomic Dysfunction, severe SFN, chronic pain and as you know (unfortunately) the list just goes on and on.

The Weather – has really riled things up – first time I have noticed the weather affecting my Autonomic Dysfunction. It definitely plays a huge role.

My Thermoregulatory System – is VERY out of whack. I have been having terrible bouts of sweating now 24/7. I have been trying to get in to see my Neurologist, but I have felt too sick.

My Neurologist started me on Midodrine and Fludocortizone for my Orthostatic Hypotension and it does help, but I still get syncope episodes every day. I haven't fallen recently, thank goodness, but have come very close. It scares me because I have 4 compression fractures (T5, T6, T7, T8) which all have over 50% loss of height and my discs in-between are all dehydrated. (My Neurosurgeon will not operate on them due to how high risk the surgery is and the success rate isn't good at all).

My skin – on both hands have red blotches on all my fingers and on the top of both. I have a lot of numbness, tingling, nerve pain in them. Both arms have nerve pain but lately it's been mostly deep muscle and joint pain.

My bladder is having more spasms and tenderness. I am nauseous a lot. I literally could lay here and type for an hour on all that's going on, lol. It's crazy!

I have decided to go ahead with getting my first Ketamine infusion. It has been recommended for a while by my pain management doctor and my Neurologist gave me the go-ahead on trying these infusions. I have been using Ketamine nasal spray for 2 years now (it has to be compounded at an apothecary) and it does help to take the edge off migraines sometimes and nerve pain. It's been hard to find people who have undergone Ketamine infusions for chronic pain.

If anyone has any experience or knowledge with Ketamine infusions, I would love to hear about their outcomes with them. When I was undergoing the plethora of Autonomic tests at the Mayo last year, the doctors here were very enthusiastic about Ketamine infusions.

Best wishes to you and everyone. It's one day at a time and one step at a time.

TeeTee

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I guess there is hope Winsantor is working hard on a gel to release which maybe a true cure for peripheral neuropathy

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Hi. I’m experiencing some weird symptoms as well burning, prickling and hot skin). Doctor said I had very high levels of B6. I live in Mesa and am thinking about going to Mayo for another opinion. Do you have the name of the doctor you will be seeing? Thanks!

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@1834

Hi. I’m experiencing some weird symptoms as well burning, prickling and hot skin). Doctor said I had very high levels of B6. I live in Mesa and am thinking about going to Mayo for another opinion. Do you have the name of the doctor you will be seeing? Thanks!

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Hi, @1834 – I believe you were asking @teetee7 about which doctor at Mayo Clinic, correct?

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@navid80

I guess there is hope Winsantor is working hard on a gel to release which maybe a true cure for peripheral neuropathy

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@navid80 yes the Winsantor research is very exciting, and it appears they will be starting a phase 2 trial here in the U.S. before years end. Concern is since they are a small company that they won't have enough funding to see things through.

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@lisalucier

Hi, @1834 – I believe you were asking @teetee7 about which doctor at Mayo Clinic, correct?

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Yes. Wanting to know who to see at Mayo on Phoenix. Thank you!

Liked by teetee7

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Wow – this is exactly what happened to me!! It's like a mirror image of my story except I took the antibiotics Cipro & Levaquin for a "sinus infection" (which I didn't end up even having). My neuropathy came on in a matter of a week or so. I have it all over my body. I am so sorry you are dealing with this. I am getting a second opinion at Mayo as well.

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@saraf805

Wow – this is exactly what happened to me!! It's like a mirror image of my story except I took the antibiotics Cipro & Levaquin for a "sinus infection" (which I didn't end up even having). My neuropathy came on in a matter of a week or so. I have it all over my body. I am so sorry you are dealing with this. I am getting a second opinion at Mayo as well.

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How are your symptoms now? It seems that symptoms come and go and vary every week. I had my appointment with Mayo Clinic last week and did Autonomic testing and testing my blood. He definitely suggested it was small fiber neuropathy and next to do a skin biopsy. I am awaiting my followup now.

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@italapino

How are your symptoms now? It seems that symptoms come and go and vary every week. I had my appointment with Mayo Clinic last week and did Autonomic testing and testing my blood. He definitely suggested it was small fiber neuropathy and next to do a skin biopsy. I am awaiting my followup now.

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My pain is everyday. Only time I have relief is when sleeping. I wake up almost feeling normal but once I’m up the stinging tingling pain starts. I have had all the tests. They came up idiopathic neuropathy. No cause no cure. I want to find the cause

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