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Anyone experienced something similiar?

M

ModyGirl

Well-Known Member
Messages
55
Type of diabetes
MODY
Treatment type
Insulin
Back in November 2020 I became unwell with neurological symptoms which quite literally occured overnight. I woke one night with a deep ache/pins and needles in both forearms and felt very fatigued, lightheaded, spaced out/brain foggy, had horrible headaches, one occassion of electric shocks shooting down the full length of both arms which was very painful, extremely painful left wrist which matched carpal tunnel symptoms but nerve tests came back clear, the feeling of slowed reflexes in my left arm and also nausea.

I literally felt like I was dying. I had a brain MRI which was clear other than fluid on my sinuses and strangely, absolutely every symptom resolved on it's own over about 4 months.

However, from that point, I have since developed pretty much every autonomic neuropathy symptom there is and I'm suffering with terrible nausea at the moment which I fear is gastroparesis. A year ago I also developed burning feet and now have a slight tingle in my hands. All these symptoms come and go.

I have mentioned my symptoms in the past but I've done so much reading and can't find anyone else like me. I feel I don't fit the typical diabetic neuropathy presentation. I've been diagnosed for 7 years, Hba1c's have ranged from 32 with 56 being the highest for reference. However, most have been in the 40's.

I had not had covid before all my symptoms started but they did get significantly worse during covid where I developed POTS and even worse again following the booster vaccine which resulted in full body internal tremors, temperature dysregulation, nausea, extreme fatigue - amongst other things.

Appreciate hearing any insights.

Thank you.
 
ModyGirl said:
Back in November 2020 I became unwell with neurological symptoms which quite literally occured overnight. I woke one night with a deep ache/pins and needles in both forearms and felt very fatigued, lightheaded, spaced out/brain foggy, had horrible headaches, one occassion of electric shocks shooting down the full length of both arms which was very painful, extremely painful left wrist which matched carpal tunnel symptoms but nerve tests came back clear, the feeling of slowed reflexes in my left arm and also nausea.

I literally felt like I was dying. I had a brain MRI which was clear other than fluid on my sinuses and strangely, absolutely every symptom resolved on it's own over about 4 months.

However, from that point, I have since developed pretty much every autonomic neuropathy symptom there is and I'm suffering with terrible nausea at the moment which I fear is gastroparesis. A year ago I also developed burning feet and now have a slight tingle in my hands. All these symptoms come and go.

I have mentioned my symptoms in the past but I've done so much reading and can't find anyone else like me. I feel I don't fit the typical diabetic neuropathy presentation. I've been diagnosed for 7 years, Hba1c's have ranged from 32 with 56 being the highest for reference. However, most have been in the 40's.

I had not had covid before all my symptoms started but they did get significantly worse during covid where I developed POTS and even worse again following the booster vaccine which resulted in full body internal tremors, temperature dysregulation, nausea, extreme fatigue - amongst other things.

Appreciate hearing any insights.

Thank you.
Click to expand...
My first thoughts that it could be something that a specialist needs to have a look at!
Having been through a battle to get a true diagnosis, I appreciate any help.
A metabolic syndrome, along with neurological symptoms. My list of conditions since has grown, not one has a magic pill, or a cure just dietary control, keeping active and trying to be as healthy as I can.

I have a rare condition, there are many others that are out there, I could believe that your doctor has used the diabetes hba1c tests just to put a name on it, without a thorough testing for other conditions.

Keep safe
 
Hi @ModyGirl have you had x-rays on your neck and spine? I had symptoms like your hand and arm pains and general feeling 'wrong' and it was due to pressure on nerves in my neck, (wearing varifocals with my work computer screen height a tiny bit too high, putting a subtle long-term pinch on the nerves and resulting in feelings like rsi, tennis elbow and carpel tunnel - I could not lift anything out of the eye-level kitchen cupboards or hold any weight above waist height and generally felt ill for a long time before getting sorted.

I saw a chiropractor and using a laptop since lockdown has stopped a major repeat (all before diabetes). I had to beg for the x-ray, and had to do my own research to end up with the Chiro because it wasn't eased (actually made worse) with a cocktail of horrible drugs inc. gabapentin and anti-depressants as it was totally 'mechanical' in the end. I still have off days when I have slept with my neck crooked, but knowing the cause helps, and knowing how to stretch and manipulate resolves it quickly.

I fear you will just have to keep nagging your doctor to 'forget the diabetes' and look at the other symptoms first. I feel for you - it always seems that when you feel at your worst, you have to battle most for some common-sense investigation. Whatever it turns out to be, I hope you can get some relief soon.
 
Thanks so much @Mrs HJG I haven't had any x-rays other than a chest x-ray last year. I have even made an appointment to see a functional doctor in London next week to try to help me but it's SO expensive and I fear I won't be able to keep it up.
 
With my spondylitis and rotator cuff injury. And before these recent injuries, my other shoulder, nerve bundle, muscle detachment is a weakness. I have been told my symptoms will improve with neck surgery. (fusing one of the discs in my neck, to stop either the nerve or the blood vessels, from being trapped, twisted, blood flow cut off or all three and more, which causes the symptoms. Can't do much now without significant increase in symptoms.
With physiotherapy, using stretching resistance bands have helped me become less painful and can use my arms better. I am still restrictive in my stretching and movement.

It wouldn't be a bad idea to see a physiotherapist or chiropractor as well as a specialist for your other issues around diabetes.
 
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