Does this sound like neuropathy?

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jp619

jp619

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Relationship to Diabetes
Type 1
Hi everyone,

Can you help me please with some advice please? I'm a T1 diabetic (for 38 years) who has been diagnosed with peripheral neuropathy today ... it may be correct, although I do have a bit of a doubt.

About 4 weeks ago, I came down with a really bad neck, upper back and hip. Whilst suffering that, I developed tingling in one foot (which I attributed to something going on with my back, such as psiatica or a trapped nerve). The doctor ran blood tests that all came back OK, and booked me in with a physio.

Since then the back pain has gone, but the foot tingling has remained. It's been like it now for about 2 and a half weeks. It's not been painful, just a tingling. At night it's worse, still not painful but feels like my whole leg is twitching in-time with my foot and wakes me up a few times. Whilst it was just one foot, I was hopeful that it was back-related. Then, a few days ago, I have developed some pain and tingling in the other foot, which has set my alarm bells ringing.

I saw the physio this week, who did a very brief 4 minutes worth of tests to test strength, and told me it wasn't anything to do with my back. He was a trainee, and it didn't seem particularly thorough. I mentioned a few things such as piriformis to the physio, but he told me that was fairly rare so not likely. He suggested I talked to my doctor about peripheral neuropathy as I'm diabetic, which I did today.

My doctor took the same stance - I have tingling, I am diabetic, therefore it's peripheral neuropathy. He said he couldn't think of anything it could be, but conceeded that some other symptoms I have are "weird"..

My concern is that it's not peripheral neuropathy, and that everyone is jumping to the same conclusion as I'm diabetic. I'm basing this on a few other weird things going on - I've also have constant tingling in other parts of my body - arm, knee, wrists, lower back, buttocks and upper leg. I also spoke briefly to my diabetic nurse, and she said my blood sugars are good, and some of the symptoms sound like it's not PN, so to keep an open mind.

My question is, does this sound like the beginning of peripheral neuropathy? And where do I go from here? I'm (reluctantly) willing to go private, but what type of doctor do you think I should see? I've seen nerve testing mentoned on forums, but nothing like that has been offered to me.

Any help is greatly appreciated. I'm quite worried at the moment. Thanks in advance.
 
Hi and welcome.

Sorry to hear you are experiencing problems in your feet/legs and other areas of your body recently.

I think I would want to know what they have checked and more importantly what they perhaps haven't checked, before accepting it is neuropathy. Did they check vitamin B12 levels for instance as that can cause tingling, because it is an important nutrient for nerve health. Have they checked inflammatory markers since you have been having pain in numerous parts of your body, not just your feet. Things like PMR which is another autoimmune condition (as is Type 1) can suddenly develop and flare up causing pain in various parts of the body and there is an increased likelihood of getting other autoimmune conditions when you already have one.

Do you know your most recent HbA1c and has that been steady over the years. I know you said the nurse told you your Blood Glucose was good but do you get the actual numbers and keep track of how things are going yourself?

Do you have LIbre or other CGM and if so what is your time in range like?

After 38 years, it is possible that there has been a bit of damage to the nerves causing neuropathy but it is just as possible to be something else and unfortunately all too easy for health care professionals to write it off as neuropathy, which can be frustrating.

Have you done any research on restless leg syndrome, as it sounds a bit like that from your description.
 
Hi Barbara,

Thanks for your reply. I believe they tested B12 and inflammatory markers with my bloods and they all came back fine. I also have hypothyroidism, which is barely managed by my doctors, so I've sent off for a private blood test to see if that's an issue.

I use a Freestyle Libre, and test/correct as part of my routine so I don't spend hours at once with high bloods. My time in target is set at 4.5-9.0 and is 59%, 9.1-13.3 range is 37% and greater than 13.3 is 3%. My latest HBA1C was 53 (not brilliant, but also not a disaster). It's stable at this range for around 10 years, since I did a DAFNE course. I guess today is a call to tighten things up!

I'd like to see someone to get a second opinion. Do you guys think it should be a neurologist that I should be looking for?
 
Have you tightened control recently? Sometimes tingling is a sign of nerves regenerating rather than deteriorating.
 
Ask to see a neurologist, I had most of your symptoms and it turned out to be MS. A simple scan with either rule it out or confirm the diagnoses.
I would also point out to your GP there is no condition called it's your diabetes.
 
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Have you tried an osteopath? They work much more holistically, my daughter is just finishing her 4 year masters.
 
Thanks for your replies. Please keep them coming, I need advice!

Quick extra question. For those with peripheral neuropathy, do the symptoms I've descibed with tingling in other areas sound like the things you've experienced? I'm sitting here now, and the tingling on the back of my hamstrings is pretty strong, whereas I thought it was mainly lower legs and feet? And did yours come on quickly like I'm experiencing?

Thanks in advance,
 
jp619 said:
Thanks for your replies. Please keep them coming, I need advice!

Quick extra question. For those with peripheral neuropathy, do the symptoms I've descibed with tingling in other areas sound like the things you've experienced? I'm sitting here now, and the tingling on the back of my hamstrings is pretty strong, whereas I thought it was mainly lower legs and feet? And did yours come on quickly like I'm experiencing?

Thanks in advance,
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It doesn't sound like the mild neuropathy I sometimes have.

I agree with @Pumper_Sue I'd go see a specialist.
 
I would say the clue is in the title of the condition, “peripheral”. Also extremely coincidental it started following back and neck problems. I am in no way medically trained but like you I would be extremely suspicious. In addition my faith in general practitioners is erm, shell we say somewhat limited, especially in this country.
 
Dave_Z1a said:
I would say the clue is in the title of the condition, “peripheral”. Also extremely coincidental it started following back and neck problems. I am in no way medically trained but like you I would be extremely suspicious. In addition my faith in general practitioners is erm, shell we say somewhat limited, especially in this country.
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I share your scepticism...
 
The only way to correctly diagnose Peripheral Neuropathy is to consult a Neurologist. They can do tests with a machine that gives definate results. My GP sent ne down this route and iI was found definately positive. There is medicaton (Gabapentin) that is very effetive if the pain gets too bad.

I am sorry you are getting worried about this but is a well known issue with long term diabetics.
 
Thanks everyone for your advice & help.

A bit of an update. Today, I seem to be getting some tingling/burning in my hands as well. Really strange, I really feel like I'm falling apart! Did others experiencing PN get this so quickly after developing PN in your feet?

Thanks in advance (again!).,
 
jp619 said:
Thanks everyone for your advice & help.

A bit of an update. Today, I seem to be getting some tingling/burning in my hands as well. Really strange, I really feel like I'm falling apart! Did others experiencing PN get this so quickly after developing PN in your feet?

Thanks in advance (again!).,
Click to expand...
Please get it into your head what you are describing is not PN.
Ask (insist) you are given a referral to a neurologist.
 
Hi again. It's been a few days, so here's an update. I've seen another doctor this week, who again prodded my feet a few times and told me it's probably diabetes related. He's going to send me for nerve conductivity tests, but it may be a month or more before the appointment comes through. Do these tests confirm it's diabetes related. or just confirm peripheral neuropathy? I accept I have PN, but it seems different than what I read elsewhere (all happened within 2 or 3 weeks, have good diabetic control, tingling all over body including back, face, etc). If it's PN caused by something else would these tests tell the difference?
 
Hi, The nerve conductivity tests just confirm you have Peripheral Neuropathy bu,t as you have Type 1 Diabetes, and as it is one of the major causes of PN, it is a fair bet that it is the cause of yours

tIf you have pain there are medications that block the pain such as Gabapentin.

Good luck
 
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