Diabetic Peripheral Neuropathy Diagnosis

[JMV]

Hi
I'm T1 female diabetic and for the last year or so have been suffering with a strange sensation in both hands and both feet. I wouldn't say they felt numb, or tingling, and there is no pain, it is more a feeling of tightness, as if they are swollen yet are clearly not. My fingertips are very sensitive. Thank goodness I have a Dexcom CGM and don't need to do too many finger prick tests as they have become really uncomfortable now. I have also noticed that sometimes gripping hold of things (like a cup), or picking up small objects, feels odd.
My GP has recently diagnosed these symptoms as Diabetic Peripheral Neuropathy (DPN), which I am struggling to accept as I would consider myself a 'good' diabetic who has always tried really hard for the last 30+ years to control this disease and all the challenges it presents. I have had consistently reasonable HBA1Cs (I think 8.5 is the highest I can recall, but usually around 7 ish, which I know isn't great but perhaps not too bad for a T1?) I am not overweight and take good care of myself - always have.
I have had nerve conduction tests but they were 'normal'. I have just been prescribed Amitriptyline but refuse to take yet another medication until I am sure that the diagnosis is correct. I am currently taking meds for cholesterol, blood pressure, hypothyroidism, HRT and reflux. My gut feeling is that it is more likely peripheral neuropathy caused by long term use of certain medications (in particular Simvastatin). With my GP's permission I am going to stop taking Simvastatin for a while because my cholesterol has been normal (in fact good) since I changed to a vegan/plant based diet 15 months ago, so I will see if that help with the symptoms. I am also going to try walking more - more job is sedentary, sitting at a desk all day.
Interested to know whether anyone else has had similar symptoms and also been diagnosed with DPN please...?
Many thanks

 

[Inka]

Sorry to hear that @JMV It sounds a weird sensation. You don’t sound convinced about your diagnosis - have you asked for a second opinion or a referral? Could it be something like rheumatism? Raynauds?

 

[JMV]

Sorry to hear that @JMV It sounds a weird sensation. You don’t sound convinced about your diagnosis - have you asked for a second opinion or a referral? Could it be something like rheumatism? Raynauds?

Thanks @Inka.
No, I'm not convinced by the diagnosis at all, which is kinda why I am asking if anyone else has DPN and what their symptoms are/were initially. Perhaps I'm just in denial? Who knows?
Yes, I am asking for a referral to a Neurologist for a second opinion, or to someone with time to investigate it more thoroughly. Perhaps it could be something else, as you suggest?

 

[helli]

I have Reynauds. There are times when my fingers feel "weird" and I can't feel what I am holding/touching but the most obvious symptom is that my fingers go white as they lose blood.
That said Reynauds is sometimes an autoimmune disease like Type 1 and sometimes autoimmune diseases seem to gather together.

 

[JMV]

I have Reynauds. There are times when my fingers feel "weird" and I can't feel what I am holding/touching but the most obvious symptom is that my fingers go white as they lose blood.
That said Reynauds is sometimes an autoimmune disease like Type 1 and sometimes autoimmune diseases seem to gather together.

Oh, that's interesting. Thanks @helli. I haven't noticed that my fingers change colour, although they are always cold.
Do you have Reynauds with your feet too, or is only hands that are affected?

 

[Inka]

I have Raynauds too and the tightness reminded me of it. Not all the other symptoms fit though. I think there’s a related condition called scleroderma too. I don’t know much about that at all though, but just something else to Google.

The reason I suggested rheumatism is that a friend had that and she kept talking about tightness in her hands and I remember looking at them as he talked because I was expecting to see redness and swelling from what she was describing, but I saw nothing. They looked pretty much normal. She also had foot issues because she wore special boots to walk in.

 

[JMV]

I have Raynauds too and the tightness reminded me of it. Not all the other symptoms fit though. I think there’s a related condition called scleroderma too. I don’t know much about that at all though, but just something else to Google.

The reason I suggested rheumatism is that a friend had that and she kept talking about tightness in her hands and I remember looking at them as he talked because I was expecting to see redness and swelling from what she was describing, but I saw nothing. They looked pretty much normal. She also had foot issues because she wore special boots to walk in.

Again, very interesting, thanks @Inka, and rheumatism is definitely something else I could look into.

 

[helli]

Oh, that's interesting. Thanks @helli. I haven't noticed that my fingers change colour, although they are always cold.
Do you have Reynauds with your feet too, or is only hands that are affected?

I have it in my toes (not the rest of my feet) too but they are usually covered so I don't know i they go white.
I find I get a Reynaud's "flare ups" when my body is stressed. This may be when cold (I usually have a hand warmer close to hand), in a difficult meeting or when I have a hypo. But it is not all the time.
As the blood starts flowing, I can get a tingling sensation - like a painful pins and needles.
And I am more susceptible to chillblains in my toes due to Reynaud's.

I have not searched for any treatment for it as I have had it since childhood and it is not a big thing for me as long as I keep my hands and feet warm.

I hope you get to the bottom of your issue.

 

[JMV]

I have it in my toes (not the rest of my feet) too but they are usually covered so I don't know i they go white.
I find I get a Reynaud's "flare ups" when my body is stressed. This may be when cold (I usually have a hand warmer close to hand), in a difficult meeting or when I have a hypo. But it is not all the time.
As the blood starts flowing, I can get a tingling sensation - like a painful pins and needles.
And I am more susceptible to chillblains in my toes due to Reynaud's.

I have not searched for any treatment for it as I have had it since childhood and it is not a big thing for me as long as I keep my hands and feet warm.

I hope you get to the bottom of your issue.

Actually, I think my Mum had the same, now that you mention it. Sounding familiar.
Although not quite the same as my symptoms.
Interesting though.
Thanks for the feedback and taking the time to respond.
Keep warm 🙂

 

[cameron]

Hi @JMV, welcome to the forum. 🙂

You would've been tested for any vitamin deficiencies, but did you discuss with your GP about taking B12 supplements with your vegan diet?

 

[JMV]

Hi @JMV, welcome to the forum. 🙂

You would've been tested for any vitamin deficiencies, but did you discuss with your GP about taking B12 supplements with your vegan diet?

Hi @cameron
Yes I have had blood tests for any vitamin deficiencies and all ok, including B12. I might mention that again though just to double check. Thanks 🙂

 

[Pumper_Sue]

Ask for a neurology referral, that should hopefully find out what is going on.
When I started getting pins and needles in odd places and mainly down one side it was an automatic diagnoses of it's your diabetes! Which I disagreed with and my usual GP sent me for an MRI scan. Which proved point blank it was not my diabetes but MS. 🙂

Bottom line is fight for a correct diagnoses, then you can move on/deal with it.

 

[JMV]

As for a neurology referral, that should hopefully find out what is going on.
When I started getting pins and needles in odd places and mainly down one side it was an automatic diagnoses of it's your diabetes! Which I disagreed with and my usual GP sent me for an MRI scan. Which proved point blank it was not my diabetes but MS. 🙂

Bottom line is fight for a correct diagnoses, then you can move on/deal with it.

Oh @Pumper_Sue ! I'm so sorry it turned out to be MS for you. I also see that you have Addison's too!! My sister has that. Bless you. What a LOT to cope with on a day-to-day basis !!
I couldn't agree more about fighting for the correct diagnosis. No-one knows and understands our own bodies like WE do ourselves.
I'll get to the bottom of it. I've asked the GP for a referral and he wants me to go in and see him for an appt Mon. He might try and persuade me that I don't need one, or he might be doubting his rash diagnosis himself and wants to double check...Watch this space 😉

 

[mikeyB]

@JMV you say your fingertips are very sensitive. That doesn't sound like diabetic neuropathy to me. Like @Pumper_Sue, I reckon a neurology referral would be in order. Sensations that you experience could be caused by a neurological disorder - I have PLS, a variant of MND, so both Sue and I know from past experience that a neurological referral is appropriate. If you do get a neuro appointment, don't expect a diagnosis. All neurological diagnoses are diagnoses by elimination, because of the similarity of many conditions. And interesting tests - one of the standard ones I had was for tertiary syphilis!

In the meantime, I don't think that amitriptyline will do anything other than make you dopy, but what you could try is CBD oil, both Sue and I use it. Doesn't make you dopy - in fact there are no side effects. If it doesn't help, try a stronger dose. It doesn't work for everybody, but when it does it's amazing.

Finally, you will face the relentless phrase "It's the diabetes". You have already experienced that at the first presentation. It may not be the last! It took me 2 years to get past that one, and five years to get a diagnosis. Mind you, PLS is a very rare disease, everyone who has it in the UK could gather in a tennis court and maintain social distancing. I'll tell you that you don't have that, it's entirely a motor neurone problem originated in the brain. Or what's left of it!

 

[Pumper_Sue]

Oh @Pumper_Sue ! I'm so sorry it turned out to be MS for you. I also see that you have Addison's too!! My sister has that. Bless you. What a LOT to cope with on a day-to-day basis !!
I couldn't agree more about fighting for the correct diagnosis. No-one knows and understands our own bodies like WE do ourselves.
I'll get to the bottom of it. I've asked the GP for a referral and he wants me to go in and see him for an appt Mon. He might try and persuade me that I don't need one, or he might be doubting his rash diagnosis himself and wants to double check...Watch this space 😉

I was lucky to be diagnosed with progressive MS which for me is very slow on progression 🙂 My biggest bugbear though is the fatigue. The best is I know what it is now so just deal with it. I find the worst is not knowing what is going on Addison's I just take the steroids and get on with life so it doesn't bother me at all.

Please do push for the referral though and do not get yourself fobbed off. Neurology apt., do take a very long time to come though so do be prepared for a long wait.

 

[everydayupsanddowns]

Hope you manage to get the right referrals to get to the bottom of things @JMV - and that you don’t face too many frustrating delays because of the ongoing disruption in the healthcare system.

 

[SB2015]

Hi @JMV I have weird feet, but it is not due to my Diabetes. I describe it as parts of my feet have been to the dentist. That numb feeling you get for ages after the injection. This happened overnight on one side and was due to a spinal stenosis. Well worth pushing for further checks, as it is sometimes easy for people to dump things on our T1.

Let us know how you get on.

 

[trophywench]

... and after I dropped something heavy with a thin edge (vitreous enamel grill pan whilst drying up) on the nailbed of my left big toe, it rendered the outer edge of that toe 'half numb' and D Consultant said 'Oooh, query diabetic neuropathy?' so I replied, 'Be 100% honest - exactly how many times in your career have you experienced DN to only affect one little part of one foot of the patient?' Answer was Nil. I said I wouldn't hold it against him and we both laughed.

That was 12 years ago now. It's still half dead there and the toe nail has thickened up that side - but nowhere else is affected.

Yes I have damaged the nerve in that toe - but nob all to do with diabetes!

 

[Flower]

Hi @JMV and welcome

When I had carpal tunnel syndrome I had odd sensations with some tingling fuzzy fingers and hands with clumsy control and weakness dropping cups, pens etc. My hands felt swollen but they weren't. There is a link between diabetes and carpal tunnel. It is progressive and can start to become very painful and spread up/down the arms Just a thought as what you're describing with your hands sounds a bit like how carpal tunnel started for me with a change in how things felt and not being able to do finger prick tests easily.

I've got peripheral neuropathy and get the feeling of something covering my feet even though nothing is against my skin. Peripheral neuropathy is sometimes referred to as 'glove and stocking' as the hands and feet are the 2 areas of the body most affected by peripheral nerve damage and change in sensation.

I hope you get some help and reassurance with it and the correct treatment.

 

[Leadinglights]

I have a very odd feeling toe following my knee surgery, it feels sometimes numb and doesn't feel as if it belongs to my foot. The physio says the feeling should come back.