Idiopathic neuropathy and dizziness.

Posted by judypall @judypall, Mar 10, 2019

I have been diagnosed with idiopathic neuropathy. Came on suddenly 8 months ago. The last 8 months have been many doctors appts to find no cause. I also just do not feel well. Dizzy like.
Head feels heavy and just not right! Not one doctor can answer that. I really feel like there is something going on in my body but no one can figure it out! It’s seems like neurologist came up with the idiopathic name since it can’t be figured out. I am only 53 and have otherwise been very healthy and active, Life has sure changed. Anyone else feel dizzy? Feel generally bad?

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fishnuts99 | @fishnuts99 | Jan 6 9:04am

this is exactly what I have. I have severe lightheadedness with bad foot neuropathy. Have developed low BP, severe constipation, am cold all the time in colder weather. My neuro doctor doesn't think I have dysautonomia despite my having all these symptoms. Very very frustrating.

fishnuts99 | @fishnuts99 | Jan 6 9:11am

In reply to @sim1 "My symptoms also started after covid and the vaccines, and I’m being told its not likely..." + (show)

same here. exactly the same.

blessedsista24 | @blessedsista24 | Jan 6 9:19am

Yes same here .
Healthy until September 2023 and then double whammy unbalanced walking and neuropathy and osteoporosis and vestibular Hypofunction. Physical therapy is all I can do .totally life changing I'm only 59.
Had covid in 2023 for 23 days and since then kindly downhill .But not giving up
I've sent my paperwork to Mayo clinic in Jacksonville. Praying for us all for answers or healing 🙏 💛 ❤️

fishnuts99 | @fishnuts99 | Jan 6 11:56am

In reply to @pacer3702 "The Facebook group Neuro V Long-Haulers is a great source for information, help, and support for..." + (show)

just joined this group on Facebook, thank you.

stallen | @stallen | 2 days ago

Hi Judy…I stumbled on your post from a few years ago and wondered how you’re doing now? I have neuropathy and also struggle with a light headedness …and motion causes a feeling almost like being intoxicated. I have autonomic involvement also which I imagine is part of it.
Steve

blessedsista24 | @blessedsista24 | 2 days ago

In reply to @stallen "Hi Judy…I stumbled on your post from a few years ago and wondered how you’re doing..." + (show)

Same here

stallen | @stallen | 1 day ago

In reply to @blessedsista24 "Same here" + (show)

I was in my later 20’s when I started noticing I was adversely affected by motion…I noticed driving got more difficult as there was too much movement between cars, guard rails, trees etc…I also noticed walking even caused the lightheaded, balance issues…it’s gradually gotten worse ( I’m 62 now). I never got an explanation of what was wrong. Then neuropathy started 8 yrs ago which just exacerbates it…unpleasant to deal with.
Similar to you it gets magnified in big stores etc….I think we fall into getting agoraphobia…which isn’t a surprise when you’re uncomfortable with your surroundings because your vestibular system is broken.
And that just throws gas on the fire. You’ve probably noticed pushing shopping carts provides some mental security. Best wishes to you .
Steve

blessedsista24 | @blessedsista24 | 1 day ago

In reply to @stallen "I was in my later 20’s when I started noticing I was adversely affected by motion…I..." + (show)

Yes and thanks
I guess we just learn to deal with it ugh..
Best wishes ❤️

bjk3 | @bjk3 | 1 day ago

In reply to @stallen "I was in my later 20’s when I started noticing I was adversely affected by motion…I..." + (show)

Hi Steve -
Wow - I feel like I could have written your letter myself, with a couple of differences in age. I was in my 50s when I started noticing the very same issues with driving that you describe. I thought it was part of the aging process. At about the very same time my PN started, but for about 20 years I didn't have a diagnosis. Your letter is the first instance where anyone has linked those driving situations with PN for me, and I send you many thanks. Twenty-five years ago it doesn't seem there was any light thrown on PN ~ likely because the tests that are used to diagnose it either hadn't been invented or were not widely available, or doctors weren't well instructed about it.
I'm definitely going to share this epiphany with my neurologist's N.P. when I have my next appointment ~ it is really interesting and should be really helpful information. Thank you!
Best to you,
Barb

stallen | @stallen | 14 hours ago

In reply to @bjk3 "Hi Steve - Wow - I feel like I could have written your letter myself, with..." + (show)

Hi…it’ll be interesting to see what your neurologist says. In my case , the motion issues started long before my neuropathy diagnosis ( almost 30 yrs). Could they be related ? Who knows.
There’s a diagnosis of Vestibular Hypofunction which has similar symptoms.
I think some of it is exacerbated by anxiety. The vestibular system is so complicated it’s difficult to assess. Best of wishes to you.
Steve