Idiopathic neuropathy

[seasider18]

From time to time over the last 40 years (I'm 80) I occasionally had a slight numbness in my left foot and ankle for short periods of time when walking. Actually it often coincided with times when I had indigestion or acid reflux and I used to make a joking connection to them. Doctors when I mentioned it did not have a reason for it. I mentioned it to a neurologist three years ago after having headaches after a bang on the head. He did an examination of my feet and lower legs and noted some lack of feeling but did not think it needed any follow up. I was found to be diabetic (T2 and controlled by diet) about twelve years ago. Tests since note lack of sensation mainly in my left foot and the numbness was still occasional. After December it worsened and started as soon as walking outside but was no inconvenience at that time just annoying. I always put my shoes on just before going out and it started then. The numbness later started to a lesser degree in the right foot..

Suddenly in early June the left foot numbness became a lack of feeling in that foot and walking became difficult. I was having difficulty in coping with changing surfaces and uneven pavements as my brain/foot did not react quickly enough. I sometimes had to stop and start again. Tiled or shiny surfaces became like ice to walk on and I was stumbling a lot and had one bad fall. Steep slopes became impossible to go down but I can cope going up. I now cannot go out on my own and need to hold on to my wives hand or arm for support.

I saw an orthopedic consultant who was of no help and was looking at a three year old back X-Ray but did X-rays of feet and ankles.

I then saw a neurologist who did about a dozen blood tests including genetic testing for CMT that were negative. I had nerve conduction tests that showed that said findings were consistent with length dependent sensory motor axonal neuropathy. He said It is equally possible that this condition is an acquired neuropathy assuming that the shape of his feet was present for a long time and has no neuropathic basis. However this sort of symptom could also be due to sensory radiculopathy. I do have narrow high arched feet and over the past fifteen years the tendons have shortened and my toes have become claw like. I do have a bad leaning forward sitting habit from years of working with computers and a bad habit of not keeping my feet flat on the floor but tucking them under my chair with only the ball of the feet and toes touching the floor. The doctor doing the nerve conduction tests felt as I do that it all stems from my lower back and wanted me to have a spinal MRI scan. I do not actually have back pain but the lower back area has a worsening feeling of tightness or compression when sitting and standing.

As I was about to have a pacemaker fitted there was not time to get it done and I now have an eight week wait before it can be done as the pacemaker has to settle in and be checked first.

A later letter from the neurologists suggests that it is idiopathic neuropathy which seems a bit of a cop out. My GP yesterday prescribed Lyrica (Pregabalin). As I just have numbness and no pain or tingling I don’t see the point of it and the side effects are rather scary and my BP meds already give me enough side effects. It seems that Idiopathic neuropathy symptoms of light headedness, dizziness and lack of balance are the same as symptoms from atrial fibrillation and side effects from medication that I take another catch 22 situation. I did stop taking Bisoprolol in late June thinking it might be the cause as a poster on another Forum had. My light headedness, loss of balance when standing did but not the numbness.

Do any others here have numbness without pain or tingling and have had a successful diagnosis and treatment for it?

Seeing an osteopath or acupuncture have been suggested and my GP is not against trying them.

[Hidden]

Hi Seasider18. You don't say if you have RA or not nor whether you are any drugs which may have caused this neuropathy. I'm not quite clear either about why you don't think your type 2 diabetes could be causing this as it's by far the most common cause of neuropathy?

I have a very tingly small fiber neuropathy that my neurologist says cannot be evidenced as such despite many tests - so is also classed as idiopathic. I am not diabetic (yet) although type 2 runs in my family. I believe it is part of my inflammatory/ autoimmune disease/ RA but it is painful rather than numbing and burns or freezes. I'm 52 and have had it for two years despite RA not having come back in the way it was when very active. It drives me nuts often - my legs feel wet and cold and at night they burn and feel as if someone's grated them.

I have frequents sweats, dizziness, loss of taste and smell and am highly allergic. Mine is also in my face. I have theories about mine but so far none of my doctors seem to agree with me so I'm trying to reconcile myself to the idea that I might never know because not enough is actually known about autoimmunity, pain, the brain, the nervous system and inflammation.

I too hate the dislike the term idiopathic. It sounds like idiotic and pathetic rolled into one to my mind!

Sorry - no answers but I know there are many people like us who suffer from neuropathy and it's a really horrible symptom so you have my sympathy.

[seasider18 in reply to Hidden]

Hi Twitchytoes,

No I don't have RA. Have I ended up in the wrong group again?

I assume that diabetic neuropathy is of gradual onset. What I have at the moment is really of sudden onset although I mentioned the occasional earlier numbness. At the end of May I could go to Horse shows and the races and be out all day without a problem. Ten days later I could not walk on my own but indoors it is much less of a problem.

I have been on many meds in the past three years after having my aortic valve replaced. I stopped Statins about two years ago as they gave me muscle pain. I have been on warfarin twice once for about a year and the next time for about six months after being in AF but stopped it due to joint pains as I had cardioversions that put me back in sinus rhythm. I am again in AF so will have to start taking it again soon in order to get an ablation.

When previously in AF I was on the worst drug of all Amiodarone. The first time it gave me a tremor in my in my hands and a shuffling gait when starting to walk but righted itself when getting into my stride. It also caused floaters in my eyes. The next time again floaters and the tremor but also a loss of equilibrium when making small turning movements as when in the shower or working in the kitchen.

At the moment I am just taking Losartan for my BP and a PPI for acid reflux along with aspirin. I am used to each of them and have been taking them since 2001.

I changed PPI's a few times until I found one that was effective. Losartan has been replaced a few times with meds that caused side effects so I went back to it. The only thing I noticed when stopping Losartan was that a hardly noticeable itching under my skin stopped.

What is the theory that you have? I find that patients ideas are usually not far off the mark as who knows our body better than us?

[earthwitch]

My aunt had some odd neurological symptoms that manifest as transient ischaemic attacks (mini strokes) and other neuropathy which were getting frighteningly frequent, until she stopped taking the statins she had been prescribed for several years. No more neuro symptoms since then.

Vagus nerve dysfunction/problems can cause a huge range of symptoms that include neuropathy, digestive problems, hearing or eyesight variability, and a long list more I cant think of for the moment.

That's two of the probably many possibilities, in addition to diabetic neuropathy. Like you, I think "idiopathic neuropathy" is a bit of a cop-out, but it doesn't surprise me when I remember reading somewhere that neurologists have the lowest diagnosis rate for the patients they see of any of the medical specialities.

[seasider18 in reply to earthwitch]

I first went into AF after heart surgery but the next two instances were caused by my vagus nerve being stimulated. Once by a colonoscopy and then by a DRE (digital rectal examination)

[Hidden]

Having just seen my neurologist and been told that he has no more ideas of what could be causing my neuropathic issues now I can relate to this idea Earthwitch. About the stroke like turns of your aunt's - they sound similar to mine. The neuro agreed with me that these were to do with trauma of intense pain of various kinds - and withdrawing off various powerful meds. This seems to trigger a response causing dramatic weakness down my left side for 3 or 4 hours each time. He said this was my brain short circuiting if you like - just shutting off signals for a few hours as a defence mechanism. This made a lot of sense but also made me think of him as a glorified electrician!

Seaside - you are indeed on the wrong community because this is the RA community so you need to find a diabetic one I would say. That said you might also want to check out Guillaine Barre which does cause sudden onset neuropathy, usually after a virus I believe, but is a medical emergency and is rare. There may be drug induced versions of this though too. Other than this I really can't help you I'm afraid but I would check out inflammatory neuropathies and then go back and hassle your GP and don't take no for an answer where urgent referral is concerned as losing sensation in this way is not right whatever the cause.

[seasider18 in reply to Hidden]

I did a search on the site and came up with various postings related to numbness and thought that I had found the right place. Neuropathy affects so many that it must pop up in many groups. I do use the diabetic group but was looking for somewhere for forms of neuropathy outside of there.

When I went for my head MRI the two others waiting were there with numbness in feet and legs. One was quite a young man who was not diabetic. The other was a lady of 86 who had fallen and broken her hip due to her numbness.

[Hidden in reply to seasider18]

But neither had RA I'm guessing? The symptoms that dominate discussion in this community are usually severe pain, flu like unwellness and fatigue plus drug reactions. Numbness is rarely a topic that is mentioned on this community. I really think you should be looking into Guillaine Barres though. Good luck!

[seasider18 in reply to Hidden]

I expect that was covered in the auto immune blood tests that were done.

[Hidden]

I think the definitive test for Gullaine Barre is a lumbar puncture actually but you maybe don't want to go down this route - mine was pretty traumatic although I know many for whom it wasn't so bad.

[seasider18]

There are two tests that I prefer not to have and that is one of them.

[earthwitch in reply to seasider18]

I'm with you on the lumbar punctures - I had the headache from h*ll for ten days after mine - during which time I couldn't even sit up without major nausea and a herd of elephants through my brain. Got very good at eating and drinking lying down. Never again.

[seasider18 in reply to earthwitch]

The second I avoid is endoscopy. My uncle who had angina went into cardiac arrest during one and could not be revived. A doctor at a practice I used to go to wanted me to have one. I though about it and later spoke to one of the other doctors telling him why I was concerned. He said that the same had happened to one of the partners at the practice and that he would not want to have one.