NeuroTalk Support Groups - Slowly Progressive Neuropathy?

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- - Slowly Progressive Neuropathy? (https://www.neurotalk.org/peripheral-neuropathy/158586-slowly-progressive-neuropathy.html)

Quote:

Originally Posted by Annie4 (Post 812250)

Hi there. I'm new here but I've been reading a lot of previous threads. I don't know where I should post since I have neuro symptoms but I don't have a dx. One neurologist said I have neuropathy so I'll begin here.

History: I'm a young mom with 4 small children. No previous health issues except c-sections. 7 months ago I started having a buzzing in the bottom of my left foot. Moved to both but worse in left. Intermittent at the time but now it's constant. A month after that I woke up with my upper legs, lower arms, backs of hands and cheeks with a mild burning/itching. I dismissed it for a few weeks until I realized that it bothered me to wear some clothes. Right toes go cold every few minutes for the last few months. Muscles twitching in various places and a jittery/shaking muscle movements are the only visible symptoms. This summer I noticed a decrease in sensation in most places on my face, arms and legs. Light touch only. But i register cold and warm still. Just last week I get rain drop feelings all over my body.

I started having headaches a year ago after never getting them so I had an MRI. Looked good. Then they did another for vascular. Looked good. Blood tests all came back normal. CBC, vit.D, ANA, B12, TSH, celiac disease...

I was referred to a neurologist in another city and he did ANOTHER MRI and found nothing on my spine but a spot on my brain. He said I might have the beginning of MS. But also said my spot was not causing my symptoms! The neuroradiologist said the spot could have been picked up by stronger magnets in the last MRI machine. So maybe it was there all along.

I saw a naturopathic doctor convinced that someone is missing something. She sent away for an expensive nutritional panel. It came back that I was low b12, selenium and fructose sensitive. All of my doctors are dismissing this nutritional panel. Saying that some labs are not legitimate or that previous tests said I was fine.

My mom has hypothyroidism and got it after her 4th baby. I thought that was what I was going to have. I don't know what to do now. My neuro that found the spot said I could have a lumbar puncture. Should I do this to rule out more things? Also, I have developed high anxiety over all of this medical stuff, although I've always been a worrier. One doctor told me this was all caused by anxiety. Extremely hard to believe but I'm not the doctor. Does that mean this is harmless or still damaging? My nervous system feels inflamed. I feel like it has been stuck in fight or flight mode for months, even when I am having fun (which might be the shaky muscles). I don't know where to go from here. I'm so down right now. Any suggestions or advise would be so great. Thanks for taking the time.

Regards,
Annie

Neurontin 100mg 2x/day for burning sensation
Doxycycline hyclate 100mg 1/day for skin rash

No meds previous to this to cause problems.

Hi Annie,
Have you received a diagnosis yet? I just read your post and am amazed someone else is going through exactly what I'm going through after my c-sect. I have also had multiple brain and spine MRI both negative. I'm worried about MS and am contemplating the spinal. Did you have the spinal done? Any recent treatments or diagnosis would be so appreciated.
Regards,
Julie

Annie if you get any answers could you let me know?? I started with buzzing in my feet about 4 yrs ago. I would get cold feet in winter ICE BLOCKS and had some burning. My issues are much like yours, I have had a nerve here or there buzz for days and have had muscle spasms as well in various areas on and off. This has now spread in arms and legs --I feel jittery and have the internal vibes as well. I have no explanation why except I do have a back that is not good. I sure would be interested to know if you get any answers. I also developed jerking in the am so having getting a brain MRI I do have migraines so think lesions will show. I am not getting one with contrast so hope what will show up will... Thanks

Hi Annie4 :hug:

I can relate to so many of your symptoms and my neurologist is doing everything in her power to determine a diagnosis after 9 years.

I had a lumber puncture done just last week and oligoclonal bands were detected in my spinal fluid, which is a substance in multiple sclerosis patients, but my neurologist is convinced I don't fit the profile for MS although I have so many symptoms related to it. We are however a step closer to a diagnosis after the LP was performed. I fully suggest you have a LP done. It can provide so many unanswered questions.

Same at you, I also have a lesion which was detected through an MRI, which is located on the left side of my brain and all these other symptoms related to weakened, burning muscles and nerve losses, even in my right eye.

I did however November 2004 had a supposedly Thalamic Stroke. I woke up one morning with my entire right side paralysed.

The anxiety I can relate to also and my neurologist now for the first time prescribed me Zanor and increased my Effexor (which was initially given together with Epleptin (Gabapentin) for the muscle burning and weakness). You can also request from your neurologist something for the anxiety as it can be caused by the decease you are suffering from.

Please hang in there and I keep thumbs up that you'll get a diagnosis soon with proper treatment. Please keep us updated also and thank you for sharing.

:hug:

Annie hasnt been here for 2 1/2 years.

neuropathy post c section???

Quote:

Originally Posted by Annie4 (Post 812250)

HI Annie,
when I read ur post I can match with all ur symptoms..even I suffer from all starge symptoms burning,tingling,fasiculationrain drop sensation etc,but no Doc is able to give proper diagnosis,even I am suffering from all these issues post c section...,let me know what further test you have doneand want to know about ur diagnosis so that I can also ask my doc to do it for me...
hugs,
sara

Welcome sarah jos. :Tip-Hat: