Tinnitus as new symptom of longstanding neuropathy anyone?

I feel very foolish about this but I forgot to mention it to her when I saw her ten days ago. She was assessing my gait and the extent or progress of the neuropathy and we were discussing my rheumatologist's request of her regarding possible biological agents (Rituximab) and immunosuppressants. She was very much against these drugs as not prevent to help neuropathy or ganglionopathy such as mine -  but wanted me to try Pregabalin. I have tried others from this family and am unwilling to try any more because of severe side effects.

And the tinnitus it is a sufficiently new symptom to bring into the pressured time frame of an NHS neurology consultation. However I did write to her afterwards and also gave her a symptom list which includes the tinnitus and I ask whether I should see ENT/ audiology for assessment.

I am very confused and alarmed because both my siblings were born profoundly deaf and my late father had a hearing loss all his life so I have a big family history of deafness. The autoimmunity is mine alone though. 

ps sorry for typos and thanks very much for replying. 

pps the neurologist has referred me for further nerve conduction tests before ruling out possible anti-rheumatic drugs in case the neuropathy is also affecting my large nerve fibres now.

Your Tinnitus and "neurological issues (very like MS)"  and your "gait" symptoms may be the result of a Vitamin B12 deficiency.

I'm not a medically trained person but I would suggst you ask your doctor to test your serum B12 and Folate levels if for nothing else but to eliminate them as a cause.

Thanks Clievalive but this was one of the first things my GP thought about testing when my neuropathic symptoms started to worsen significantly four years ago. Since then I've been checked and checked again and take B12 sublingually just to be extra sure. Levels are good. It would be really easy to sort out if that's all that was wrong! 

Ps I do have Sjogrens which is also autoimmune and causes peripheral neuropathy in 20-50% of sufferers. 

Is your Folate level OK as this is essential to process the B12 in your system.?

I wish you well.

The presence together of a family history of hearing loss and your tinnitus may be significant.  In the short time the neurologist has available to examine you, as you mentioned, he or she will probably refer you to ENT for this.  I suspect that you will do an audiogram, and with your family history this will be very useful to do.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

Thanks for your supportive advice Glenn. I live in the north of Scotland but am down in London for a few days soon and was thinking about seeing someone privately while I'm there. This is mainly because I know how long it will take to be seen otherwise!

It is indeed a horrible symptom - for me it's just the latest one of several unfortunately. The neurologist aid that I must just have continuity now between her and my rheumatologist. We have had to move locations and hospitals a lot over the past year so she is right that too many opinions can spoil the broth! But I've learned the hard way to trust my hunches, having been misdiagnosed and treated aggressively for RA previously.

Re causes - I do have some confirmed arthritis in my neck but it's not often a source of pain or discomfort so I'm minded to think my tinnitus is due to nerve damage from my immune mediated neuropathy. I also have had a very bad taste for six years now and this is the other symptom that I really hate. I feel that both impact a lot on my quality of life now. I did have a lumbar puncture that confirmed I have a systenic inflammatory process occurring and a lip biopsy that says I have high numbers of lymphocytes. But autoimmune ear diseases are rare so I guess I just need an audiology test to take with me to an ENT specialist and that's what I thought I might try and fast track now - the audiology test.

If I can sort out the tinnitus i will feel I've had a medium sized lottery win. If I can sort out the bad taste and tinnitus I would feel as if I've won the full jackpot!

We  both are in the same kind of dilemma. I have other baggage too, that may or not cause or add to the intensity of my tinnitus. I, too, have arthritis in the neck and a bit of TMJ but I attribute my tinnitus to damage from many factors. As a kid growing up, I had bad absessed ears and I remember my mom taking me to the doctor for injections of penicillin. Then as a teen, I played drums in a rock band for many years. The music was extremely loud. As I got older, I enjoyed landscaping and working outside, thus, I used loud power equipment with no ear protection. As I got even older, one of my German Shepherds used to bark loudly in my ear and I think that helped it along. 

My ENT guy said yesterday that hearing loss is either caused by circulatory problems or damaging noise. That kind of rang a bell because I stopped exdercising in March of this year and my tinnitus amped up pretty good.

I can understand totally about feeling like you hit the lottery if you can sort and separate what's going on. Me too! Please keep us posted.

My wife has always wanted to visit Scotland.. It's so beautiful. Her grandmother was born and raised in Peebles, Scotland.. I hope you enjoy some of your visit.

Keep in touch,

Glenn

Thanks Glenn. Hmm that's interesting to hear a bit about your history. I've never really been exposed to very high decibels although my three sons were all in rock bands and used to rehearse in our small house regularly. But the dogs and I would hide! My husband's hearing isn't good but he did used to go to our son's gigs often.

I do have Raynauds with my Sjogrens but I don't think this would account for tinnitus. I'm vigilant about exercise so nor would the arthritis explain.

The neurological issues(very like MS) still seems the most plausible explanation to me for my tinnitus but according to your ENT this is not one of the causes? Perhaps he meant common causes and arthritis is common but what I have is very rare unfortunately. So I'd need an ENT who understands immunology too. A tall order I suspect! Hey ho onwards and upwards. Good luck to you too and I'll come back and share if I make the lottery win!

Just started a food supplement called Taurine today to see if this helps as recommended to me on NeuroTalk forums for curing tinnitus. I'll give anything a go frankly!

I'm about 4 1/2 years into a bout with idiopathic, full body, small fiber neuropathy.   Like the original poster,  I'm also experiencing a high-pitched whine.  It seems to be worse in the evening like all my other neuropathy symptoms.  

Hello. What kind of neuropathy symptoms do you have? Have you taken quinolones before they having this?

No, no antibiotics were involved.

I have both typical and atypical symptoms.  The typical ones are tingling/vibrations/burning in my feet and legs, tingling in hands and head, and then these really bizarre "whooshing" feelings all over that come again.    They're kind of like what you feel when you get an adrenaline rush.  Sometimes they're in isolated parts of my body like they're hitting a nerve bundle, and sometimes they're just full body waves.

Tinnitus can be a sign of  a vitamin B12 deficiency

Thanks, my B12 levels are good.  When I was supplementing before I got into the neuro, lab results showed my levels were too high.  The neuro told me stop the supplements, and my levels remain good.

This is exactly like me Jane. And I’ve just had full vestibular tests, referred by my ENT who wished to exclude autoimmune ear disease due to vertigo. The tests (awful) showed I have no ear damage to account for my tinnitus or vertigo.

The audiologist wondered about the arthritis in my neck but to be honest - as my small fibre neuropathy (SFN) affects every part of me and you have pretty much the same combination - I’m voting for SFN as culprit. 

I should add that i have had arthritis of my jaw excluded and sensory ataxia added to my list. I fail the Romberg test every time.  So the audiologist felt that my vertigo, disequilibrium and tinnitus all belong to the neurological side of my Sjögren’s rather than vestibular damage. 

Wow. You sound like what ive went through the last 2 years.

Shame this was a few years ago, and doesnt look like you are active any more.

I'm still around and still dealing with it all. It's definitely an inflammatory condition as I now have inflammatory nodules in my lungs. I'm affected by salt terribly as well, and can keep my symptoms to a minimum by watching salt intake.No clue why.

Nice to hear from you and hope all is well.

How did you find out about inflammatory nodules in lungs?

The only thing ive had flagged up is slightly elevated IgA, low positive ANA and a history of extremely low serum folate levels.

Ive had MRI scans related to nervous system, but nothing has came up.

Just like you, dealing with them everyday.

Hi,

The inflammatory nodules were an incidental discovery when I had a routine Cardiac Calcium Scoring test done in 2018. They recommended a CT to investigate further. The radiologist who did the CT report said they looked inflammatory at the time, so that put it to rest at the time. Fast-forward to 2020, and another follow-up CT scan was done. This time, the radiologist was concerned about possible multifocal adenocarcioma. My dad died of lung cancer at 42, so that started the phone ringing. To keep a long story as short as possible, I've since had a PET scan, lung biopsy, and three or four follow-up CT scans. They're back to inflammatory again.

I'm not happy things are growing in my lungs, but they're not causing any issues.

At this point, I think my body is producing histamine in response to something. Histamine is a neurotransmitter and can cause a raft of symptoms depending on which histamine receptors are getting hit. H3 receptors hit your central nervous system, and unfortunately, there is no H3 antihistamine.

The only MRI that showed anything out of the ordinary was my brain MRI. It showed two areas of hyperintensity of "uncertain clinical significance."I read one research report that said that's exactly what excess histamine in the brain looks like.

I also have developed kidney stones for the first time in my life, so I've had to alter my diet and go low oxalate and low sodiumMy neuro symptoms are better than they have been in years, and I can only cite the dietary change as the reason why. They're not gone, just not as bad.

Really don't know what make of all of it, and I'm like most everyone here, I'm on my own to figure it out.

With regards to your mention of salt (sodium and potassium), there seems to be some link between that and excitability of neurons in the body. If you check up on HCN channels (particularly HCN2) and tinnitus, there is some ongoing research to say that disregulation of these channels can cause neuropathic pain and tinnitus.

The disregulation is potentially caused by neuroplasticity, if you've heard the term. Basically our brains change and adapt based on whatever our experiences are throughout a period of time. I am thinking with what is mentioned in the information i've read, for myself and potentially you as well, there is some form of hyperactivity of the neurons which is causing nerves to fire continuously. .

As I was going through quite a stressful period in my life, with job interviews, having a young family, hobbies, etc, my theory for me is that period of stress induced these changes, as my nervous system was in overdrive. When I initially had my symptoms, I had those typically assumed with anxiety, however when the pain started, it came for 3 months, then went away for 3 months, and came back. Now have varying days of it, but its more of a nuisance than anything. My pain levels probably go up to a 4 or 5 max, and are most of the time at a 2 or 3. But to have sharp stabbing pain and ringing tinnitus almost 24 hours a day is not great for anyone.

I might try a low salt diet and see how I get on.

I was wondering if all this developed for you, whenever you had a stressful period of your life, or have/had anxiety?

Fascinating!!! Yes, I have heard of neuroplasticity and just recently started looking into it as a mechanism for pain control.

Stress? YES.The year that this all started involved a lot of stress. There was both a lot of work-related stress and also physical stress caused by a cascade of unfortunate events that started with a double-red blood donation. I won't go into all the gory details, but it involved my ferritin levels dropping into the single digits while I contained to be physically very active. I ended up taking iron supplements which tore up my digestive tract, caused immediate weird symptoms in my head, and that was the beginning of the nightmare.

Generally speaking, anxiety has not been a big problem for me...until I get under stress. My brain goes into overdrive when I'm under stress. Thankfully my life isn't terribly stressful, but that prolonged stress back in 2013 was highly unpleasant. And now, as soon as cortisol or adrenalin hits my nervous system, it's like a fire has been lit in me. Your theory fits my story.

Thanks for the prompt to revisit the neuroplasticity angle of things.

Had a terrible week 🙁

I've started to notice i get red blotches or patches on my skin. Its not painful or itchy. It seems to be flushing of the skin which happens for a hour or so and then disappears. Actually had it for a while, but saw it come on more in the last few months.

Also been having pain in my legs, in addition to the pain in my arms, which is really bringing me down. Also been having crazy muscle twitching, I get more what feels like micro twitches everywhere, and a few larger twitches. I've had more blood work done and awaiting results.

I am actually thinking this could be something like small fibre neuropathy.

How did you all get diagnosed with small fibre neuropathy?

Sorry to hear about your terrible week. 😦

The twitching is something I also deal with, although it's not twitching you can see. I can just feel it, and "micro twitches" is a good description of it.

My neurologist diagnosed with me idiopathic SFN after all blood work, MRIs and even a spinal tap came back normal. He never did a punch biopsy, though, which is absolutely confirmation. The reason he didn't do it was that he said he knew I had SFN, and a punch biopsy wouldn't tell us why.

Hi Jane,

Thanks for the response again.

Yeah been a rough week, even mentally.

That seems a bit useless with the idiopathic tag. Surely they could have looked more into a reason. I read that 50% of SFN diagnosis is idiopathic, but the other 50% is made from other more obvious causes like diabetes. I certainly wont have that as I am have a normal BMI, and i assume you've explored this cause also.

I have an assumption that it could be autoimmune. My father has rhuemetoid arthritis and my mother has fibromyalgia, even though fibromyalgia is not considered autoimmune, there has been recent research suggesting such. This may just increase my risk of an autoimmune disorder developing.

May I ask if you had any autoimmune markers in your blood work, like positive ANA (if so what titre) or any other autoimmune anitbodies?

I flagged on a 1:80 speckled titre in 2020, but they say that gives a low chance of an autoimmune disorder. I'll be keeping an eye on my recent bloods which will come in next week.

I had a full blood work-up by a rheumatologist....nothing. ANA results were completely normal.

I believe what is wrong with me is in the functional realm, and not something mainstream medicine will pick up on.