RLS or neuropathy?: Hello everyone, One... - Restless Legs Syn...

Restless Legs Syndrome

21,787 members15,514 posts

RLS or neuropathy?

14 Replies

Hello everyone,

One day ,about 4 months ago ,when i woke up I had a strange feeling of of ants crawling/electricity going through my calves.It wasn't painful just very annoying.I didn't really notice it during the day ,because i was focusing on work but it was there.When the night came it kept me from falling asleep but after about 2 hours of struggling i fell alseep.The next day i went to my neurologist and he diagnosed me with Restless legs syndrome.It didn't bother me much so i left it at that.Fast forward to a week ago when i went to a new neurologist (not for the rls).He asked me if i had any conditions and i said rls .He asked me what my symptoms were.When i described them he told me that i don't exactly fit the discription but didn't continue the conversation any further.I dwelled on his remark and the only other condition that came to mind was neuropathy .I wish to ask for your opinion if my simptoms sound akin to rls before i visit the neurologist again.

Symptoms:

Feeling of crawling ants/electricity going through my calves .They are not painful just very annoying .They are relieved by movement.

An indescribable urge to move my legs.I only noticed it one night because the crawling ants stopped 2 months ago.Since then i haven't had that feeling just ocassionally get the urge to flex my feet.

It seems to be episodic .It last for about a week or two and during that time it is constant 24 hours a day.It then dissapears for some time.

After vigorous arm trainig the ant crawling appears in my arms for about 2-3 days and after that dissapears.When i flail my arms during that time it basicaly disappears.

Why doctor said that I don't fit the exact discription:

I have it 24 hours a day during the episode (the rls episode not the menstruating type.I am a man)and it sometimes goes to my arms.He said that that usually happens after someone has suffered for quite a while and whose rls isn't periodic but happens every day.

He said that everything is possible and that i could just be a particular case but i wanted to know your opinion. I don't have any symptoms of neuropathy - pins and needles , loss of feeling or pain in feet or arms but then again according to my neurologist i don't fit the RLS criteria either.I don't drink,work around toxins,have diabetes nor have i injured my legs.

Read more about...
14 Replies
RoadRunner44 profile image
RoadRunner44

Hi, I was in a similar position about a year ago. The crawling feeling on arms and legs,,the need to stretch my ankles and feet. I began to get other pains in my legs too and aftrr some blood tests my doctor put me on a course of iron.

As I had nebulized colomycin for a few years my consultant (for bronchiectasis) stopped it for three months to see if it was a side effect. At the time I was also taking a drug for depression called Citalopram.

I joined this forum for support and came across a fantastic man who understands Neuropathyand restless leg syndrome better than anyone I have come across. He explained things in a very simple but knowledgeable way. One thing he mentioned was how some anti depressants can worsen the symptoms of these conditions. I weanevd myself off these tablets too. I have to say I dont have any of those awful symptoms now and its been over two months. Time will tell if it stays that way.

Another very helpful person on the neuropathy forum mentioned that research showed that there is one form of neuropathy that's caused by medication. If I can find the link again, I'll post it to you here. So think about that too.

In the meantime, I hope the man I was telling you about will read your post and respond to you. He goes under the name of Manerva. Believe me, he is the person to advise you. He is a godsend and is highly respected on the forum.

Wishing you all the best.

😀

in reply to RoadRunner44

I really hope he does.

Madlegs1 profile image
Madlegs1 in reply to RoadRunner44

Sounds about right.

Very likely a reaction to something. Either medications or food/ drink.

Everyone is different, so it's very difficult to diagnose across the board.

Good luck.

RoadRunner44 profile image
RoadRunner44 in reply to Madlegs1

There's not enough solid understanding of this condition Madlegs.

😯

Hi, it's true, it isn't entirely certain that your symptoms are RLS.

I say this because although you have akathisia i.e. the urge to move, restlessness and the sensation that goes along with it, other features of your symptoms do not fit the RLS diagnostic criteria.

In addition, akathisia can be a feature of other neurological conditions, it isn't exclusive to RLS.

Looking at the five accepted RLS diagnostic criteria -

The urge to move is the principal defining characteristic of RLS and without this symptom it would NOT be RLS, you DO have it.

Another criteria is that the symptom occurs or is worse when you relax, sit or lie down and in this case it usually takes a few mnutes to start. I don't know if you experience this, you haven't mentioned it, but if you do, then you fit 2 of the criteria.

Another criteria is that the symptom disappears or lessens when you move and you do fit this criteria.

The fourth criteria is that the symptom only occurs at night or is worse at night. You say it is "constant" 24 hours a day. This does NOT fit the criteria.

Lastly, the fifth criteria is the the symptom cannot be explained by anything else. You do NOT fit this criteria, but this may simply be because as far as your symptom goes, there are other explanations, they haven;'t yet been eliminated.

Since to confirm a diagnosis ALL five criteria have to be met, your symptom cannot be confirmed as RLS.

There are a couple of other things which may or may not be a part of RLS.

These are -

RLS "typically" affects the legs hence the name. However it can affect other parts of the body, so although having the symptom in your arms does not exclude RLS, it's just not typical and certainly not in mild RLS as you imply yours is.

Also typically, for many the symptom is at it's absolute worse when lying down falling asleep and like myself, I believe many people can put up with the symptoms until this starts happening, because it prevents sleep.

Neuropathy -

Simply put. this means issues with nerves. It can be central, i.e. in the brain or spinal chord, or peripheral, outside the brain or spinal chord.

Also, very simply out, there are two types of nerves . One is sensory nerves carryng sensations from the parts of the body TO the brain e.g. pain, touch and temperature. The other is motor nerves carrying messages FROM the brain to muscles all over the body.

The akathisia experienced as part of RLS is primarily due to oversensitive motor nerves. Sensory nerves are less affected.

Neuropathy can affect both sensory and motor nerves.

"Typical" symptoms of neuropathy are tingling burning, pins and needles, partial or complete numbness, weak muscles or absent or changed reflexes.

Spinal neoropathy affects nerves going to or from particular parts of the body depending on what level of the spine the nerves leave or enter the spinal chord. So overall, the legs are associated with the lower spine, the arms with the upper spine. A spinal neuropathy would affect only a specific part of the body.

Based on this, it seems you do NOT have any specific brain or spinal neuropathy.

Peripheral neuropathy, unlike the above may affect particular parts of the body, but may also be more diffuse, i,e. can affect both upper and lower body. There are various causes of peripheral neuropathy. You already appear to be aware of some of these.

If blood circulation is poor, either to a specific part of the body, and perhaps more generally, this can lead to nerves being starved of oxygen, hence neuroapthy. This may occur paricularly in the extremities which are the furthest away from the heart, lower legs, feet and hands. If your circulation is OK, then you won't have neuropathy due to this.

Diabetes can lead to neuropathy because small capillary blood vessels can get narrowed or blocked. You don't have diabetes.

Apart from circulation, if the blood isn't capable of carrying enough oxygen, i.e,. anaemia then there can be symptoms of neuropathy.

Just to note, there are several kinds of anaemia. Anaemia will result from a reduced number of red blood cells, e.g. as in haemorrhage. There is iron deficiency anaemia, which is the one most people are familiar with. This is a lack of iron and hence a lack of haemoglobin which carries oxygen about the body. There is also macrocytic anaemia. This is so called because red blood cells are incompletely formed in the bone marrow and are larger than normal. This is due to a lack of vitamin B12 and folic acid. The signs of this are not so obvious as iron deficiency anaemia, but the outdome can be the same.

Various other things can affect nerves. One of these, again, is vitamin B12. which does play a part in nerve function i.e., vitamin B12 deficiency can lead to a kind of neuropathy. It may be worthwhile then being checked for vitamin B12/folate deficiency if your doctor hasn't already done so.

This can be affected by lack lof B12 in the diet, but it's more often due to a failure to absorb it from the gut. Some medicines can cause this as can other gastrointestinal issues.

An electrolyte imbalance, i.e a lack or excess of sodium, calcium and potassium can cause nerve dysfunction. If this applied to you however, I'm sure you'd have noticeable symptoms. This is associated with dehyradration and/or kidney problems.

Overall, it appears to me that your symptom does not sound like a neuropathy, but I can;t say that with 100% certainty.

It is significant that you say the symptoms in your arms appears after training and is relieved by flailing your arms. This, to some extent suggests perhaps a muscular problem or some other nutitional problem.

In summary

Your symptom doesn't fit the RLS criteria as it doesn't fit them all

I can't say that it is neuropathy.

I'd suggest that if you've not already been tested for anaemia, vitamin B12 deficiency you could ask for these.

Other things which may or may not be a factor are to do with your lifestyle, nutrition, drinking habits, activity levels and kinds and mental health/anxiety.

As the symptom comes and goes, it may be worthwhile keeping a daily diary of what you do, eat or drink and your symptoms to see if there is any pattern.

On the other hand I tend to think if nothing actually hurts, everything works and I can sleep and get to do the things I want or need to do then there's really not that much to be anxious about except anxiety itself.

Your symptom seems minor at the moment, if it gets worse then thatv wouldn't be good, buit it may become clearer what it is.

I hope this helps.

in reply to

It does .Thank you.

in reply to

Are there any tests I can ask my doctor to preform?

in reply to

There are no diagnostic tests for RLS. Diagnosis is made by comparing symptoms to the diagnostic critetia.

Here's a link to these

irlssg.org/diagnostic-criteria

There are various tests for neuropathy, it depends on the particular symptoms, e.g. if a spinal neuropathy is suspected an MRI. If a peripheral neuropathy is suspected, nerve conduction tests. The latter doesn't always seem to show anything.

A physical neurological examination might detect absent or changed reflexes or weaknesses.

Blood tests are NOT diagnostic of RLS, but if the diagnosis IS confirmed then there are several tests for iron metabolism, plus magnesium and vitamin D as these are factors in RLS.

Otherwise if other issues are suspected, blood tests for iron deficiency anaemia, vitamin B12/folate, thyroid function and kidney function.

You say you don't have diabetes.

That's about it really.

in reply to

I was asking for neuropathy .I read about one called nerve biopsy.Is it reliable?

in reply to

Some of the tests I suggested are for vague neuropathic symptoms e.g. anaemia, B12, kidney function.

A biopsy, I guess would only be carried out if there was a strong suspicion of neuropathy and only then, because it is an invasive procedure.

Neuropathy is usually suspected if there is pain or weakness.

in reply to

I didn't experience pain or weakness .The feeling of shock hasn't appeared in my legs for 2 months but i have gotten it in my arms after exercise.

in reply to

In a nutshell, pain and weakness are the typical symptoms of neuropathy.

I wrote broadly about neuropathy,, but my impression is that you don't have any neuropathy and don't have RLS.

It may be that the symptoms you experienced in your legs only, were early symptoms of RLS, but now appear to have disappeared.

The symptoms in your arms may be urelated to the symptoms in your legs i.e. they're not connected.

If you get the symptoms in your arms following training then it may be simply muscular due to the activity.

Please don't take offense but anxiety may be an issue. I also don't want to be dismissive if you're alarmed by these symptoms, but they appear vague, mild and don't appear to have any signficant impact of your quality of life.

If you are concerned then I suggest seeking qualified medical advice, but bear in mjnd that you will not be offered any investigation or treatment for something that doesn't appear to be signifcant.

If your symptoms do get signficantly worse then definitety go back to your doctor.

A further suggestion is that you seek a private consultaion with a physiotherapist, osteopath or counsellor to discuss any anxieties.

in reply to

Thank you very much for your great help.You guessed correctly I am quite anxious.I am the father of two boys and not being able to provide for them and be an active part of their life ties directly into my fears.I just really wanted some opinion as I am not really into medicine/biology.I will go about my life now and if things get worse I will definitely visit a doctor.

in reply to

A lot of people are currently suffering anxieties about their health and circumstances and it's not surprising in the present situation.

It's important to not let it spiral out of control. I have been witness to several people undergoing mulitiple investigations, inappropriate treatment and even surgery when no such thing was necessary.

You may also like...

Not sure if I have RLS or neuropathy symptoms?

many of RLS sufferers have tingling and heaviness in their legs (or one more than the other )...

Sensory Neuropathy Causing RLS and a Multitude of Symptoms

what seemed a lifetime to see a Neurologist, he diagnosed Acute RLS *It affects all my limbs acutely

RLS and small fiber neuropathy

anyone else suffer not only from RLS but also small fiber neuropathy? What have you found that...

Rls and peripheral neuropathy

if anyone has been diagnosed with peripheral neuropathy? I was diagnosed about a year ago. I have...

Anyone here have or heard of a connection between RLS & peripheral neuropathy?

I have had severe RLS since about the ago of 9, and have been on medication(s) for years. The past...