Neuropathy - why am I being told all is okay?

[Lunar_Lapin]

I was diagnosed 2 years ago and was relatively positive until around 12 months ago when I developed what I now know to be damaged nerve endings in my left thigh. It was initially in a small area and didn't really bother me. It now covers the whole outside of my left thigh as well as my left knee and has started affecting the lower half of my left leg also. My control has never been horrendous, I am on novorapid and Lantus glargine and my hba1c has gotten better and better. Whenever I voice my concerns to the doctor or nurse I am just told I can be prescribed medication for the pain. I don't want this. I want to know why this is happening when I am being told I am doing well and how I can prevent it getting any worse! I am 22 and getting more down by the week about this as I am getting nowhere at my diabetics clinic. Does anyone have similar experiences?

 

[Heathenlass]

Have you had a definite diagnosis of diabetic neuropathy ? It's unusual for it to develop so quickly post diagnosis, so I'm wondering if you have been investigated for other causes ?

Signy

 

[Lunar_Lapin]

Well I'm not really sure I've mentioned it several times to my DSN who has said it is nerve damage but when I ask her why I am experiencing this yet being told all my numbers are fine she changes subject or gives a very vague description of diabetic neuropathy. I then went to see my gp who ten referred me back to my DSN. I don't really know enough about nerve related issues to argue it out with a health professional. I did have one doctor say it may be a delayed response to high sugars prior to my diabetes diagnosis but if that is the case why is is worsening so quickly now?

 

[Spiker]

I was 29 when I was diagnosed and I had nerve damage in my legs at diagnosis. With insulin therapy this reversed. Keep your blood sugar control tight and maybe you will be able to reverse it, as you are very young.

There is some evidence (and more speculation) that nutrient supplements can aid nerve regeneration. Niacin and vitamin A I think? Try Googling that. Or maybe someone will chip in with some links.

 

[Heathenlass]

Hmmm, I would ask for a second opinion in that case.
It's all too easy for HCP's to hang a symptom on the hook of diabetes, when that is not always the case. Try asking your GP for a referral to a Neurologist, ensuring that they know it is causing you concern.. I'm thinking of a family member who was told she had neuropathy, but it turned out to be a trapped nerve. Not that I'm saying that is the same in your case, but I feel you should be investigated properly, not diagnosed by assumption

Signy

 

[Lunar_Lapin]

Thank you both.

Yes I think I will push for an appointment with neuropathy. I'm a bit of a wimp when it comes to demanding things from doctors and tend to feel like they think I am wasting hair time!

 

[tim2000s]

And if you want to look at supplements, have a read of this http://www.diabetes.co.uk/forum/index.php?posts/781504/ plus also look at alpha-lipoeic acid, which is also supposed to help neuropathy.

 

[Erin]

I was diagnosed 2 years ago and was relatively positive until around 12 months ago when I developed what I now know to be damaged nerve endings in my left thigh. It was initially in a small area and didn't really bother me. It now covers the whole outside of my left thigh as well as my left knee and has started affecting the lower half of my left leg also. My control has never been horrendous, I am on novorapid and Lantus glargine and my hba1c has gotten better and better. Whenever I voice my concerns to the doctor or nurse I am just told I can be prescribed medication for the pain. I don't want this. I want to know why this is happening when I am being told I am doing well and how I can prevent it getting any worse! I am 22 and getting more down by the week about this as I am getting nowhere at my diabetics clinic. Does anyone have similar experiences?

Hi Lunar_Lapin,

Neuropathy is felt in many areas of the body, mostly the legs. The reaction of your doctor may be that if they cannot reversed neuropathy (not necessarily so) they have to give you pain medication. I'm all for pain medication.

 

[CarbsRok]

I was diagnosed 2 years ago and was relatively positive until around 12 months ago when I developed what I now know to be damaged nerve endings in my left thigh. It was initially in a small area and didn't really bother me. It now covers the whole outside of my left thigh as well as my left knee and has started affecting the lower half of my left leg also. My control has never been horrendous, I am on novorapid and Lantus glargine and my hba1c has gotten better and better. Whenever I voice my concerns to the doctor or nurse I am just told I can be prescribed medication for the pain. I don't want this. I want to know why this is happening when I am being told I am doing well and how I can prevent it getting any worse! I am 22 and getting more down by the week about this as I am getting nowhere at my diabetics clinic. Does anyone have similar experiences?

Do you have your care with GP or hospital? If GP ask for a referral to the hospital clinic. These are the signs of neuropathy http://www.diabetes.org.uk/Guide-to-diabetes/complications/Nerves_Neuropathy/, must admit your symptoms don't like neuropathy so also ask for a referral for nerve conduction tests.

 

[Lunar_Lapin]

It started as numbness, with tingling become more frequent and now burning sensations. This leg gets cold very quickly and when it gets cold it's unbearable. My usual clinic is with the hospital so will go back to the doctors.

 

[dan12321]

Yeh as others have said i would definitely want more investigation into this, as it could be something unrelated to diabetes, i wouldnt have thought it would be neuropathy especially as youve only been diagnosed 2 years. If it is neuropathy ive heard sometimes as the nerves are recovering they can produce weird symptoms, that would explain your blood sugars being ok and the sensations getting worse. But who knows really you need more investigations doing by the professionals. Another thing id say is just because your hba1c is ok doesnt necessarily mean your sugars control is ok, if you have alot of spikes and hypos, they can cancel each other out on the hba1c, and the results will appear good, spikes can cause neuropathy so watch out for them

 

[Laura93]

I was diagnosed at 12 with diabetes I'm now 21 and have been diagnosed with peripheral neuropathy it started just like you with the numbness and tingling sensation but mine was with my feet they were also freezing cold I could never get them to feel warm. I told my consultant about it and like you they fobbed me off saying it was nothing and that I would be okay. Anyways last year I had a DKA as my pump wasn't working correctly and I ended up having no insulin for 22 hours, after this I developed pains in the backs of my legs really bad pains and burning. Yet again I told my doctor and nurse and they said it was nothing to worry about they wanted to concentrate on my hypos. After going to see my GP he gave me some pain medication as he thought it was neuropathy and told my consultant to run tests but unfortunately for me he didn't and it took from June to December and numerous visits to doctors, nurses for them to finally diagnose me with peripheral neuropathy but as it took so long my GP prescribed me loads of different pain meds at one point I was on 19 tablets a day to try and ease my pains. I have also developed autonomic neuropathy of the stomach which they think was caused because it took so long for them to acknowledge the fact I had peripheral. But am now on the right track to recovery thanks to my pain clinic consultant which my GP pushed for.
My advice to you is keep on at them tell them how you feel but also keep a diary of when your pain gets worse and mark it out of 10 and write if you take any meds to try and ease the pain and if they worked or not, as these are questions that they ask you when you have certain tests. I hope this helps you and good luck!

 

[Daibell]

Hi. Ca you let us know what your last HBa1C was and what control problems you have? Yes, I would raise it again with the GP.

 

[Bore63]

That's pretty serious. Since you are not getting any help from your endocrinologist, ask your GP to send you to a neurologist. And I would ask my GP to refer me to a different hospital in future. You have a choice.

 

[Lunar_Lapin]

I think the spiking is an issue - I have told them I have multiple highs and hypos (relatively mild) that I think are making them feel I'm doing well when I'm not. My feet are always freezing. My last result was 7.6%. I have been told to aim between 7-8 but I really don't think this is doing me any favours and I am constantly trying to lower it!

 

[Mike d]

What are you like in summer?

 

[Lunar_Lapin]

Was still there, just didn't get the pain that comes from the cold although my feet still feel like ice to the touch all year round. I was wearing thermal socks and boots when everyone else was in flip flops

 

[Mike d]

Get that seen to ...... does not sound right to me. Best of luck

 

[RuthW]

Are you taking anything else? I ask because years ago I thought I had neuropathy in my thigh (it was numb) and it went away when I stopped taking some B vitamin or other that I was accidentally overdosing on!

 

[LucySW]

Thank you both.

Yes I think I will push for an appointment with neuropathy. I'm a bit of a wimp when it comes to demanding things from doctors and tend to feel like they think I am wasting hair time!

I so share that. But remember, you want to look after yourself well and look out for your best interest. No one else will do that for you - you're the one on the spot. So screw your courage to the sticking place.

Prepare. Work out a list of what you want to ask for, and rehearse how you'll ask for it. Video yourself if necessary! Doctors don't think you are wasting their time. You won't be.