NeuroTalk Support Groups - I am so scared

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - I am so scared (https://www.neurotalk.org/peripheral-neuropathy/145439-am-scared.html)

Some doctors don't like to order mris so I feel they brush it off. I have had 3 mris and had to beg for 1 of them to be done.Even if there is a 1 percent chance I said I want it done.
I agree about the panic issue. Trust me I understand and relate because I worry so but pre my dx I worried about every possible dx and then I just got myself more worked up. This board helped and still does so much and also reaching out to your family or friends.

I really do understand you

Worry...to what end?

Worry, or more likely concern SHOULD direct you to agressively seek and get all the right testing.... You can't worry about what you don't KNOW about?
So, be agressive in finding out WHAT you should worry about and then LEARN about it!
As as aside? When I was 'diagnosed w/cancer?' I had'nt had the biopsy results in yet ...but I started 'reading like a crazy person'! Until, I realized, that like neuropathies? There were soo many factors to consider that I couldn't consider any until I knew more about what to LOOK at! Once you can get your docs to zero in onto something? You can then FOCUS on the hundred or so neuro problems in your case. Panic and worry are definitely premature...tho your body is screaming RED ALERT! all the time.
You hurt, feel like what goes out w/the garbage or worse! But, GET MAD AND LEARN! Be your own detective and zero in on the 'cubbyholes' you think YOU mite fit into? It IS overwhelming at first? But, w/the right doc on the right tracks you will find some sort of satisfaction in the result...if you can help steer the diagnosis to that 'right' or near-right solution...
This is up in the 'stickies'? But start and take a gander at ALL of the neuro problems! It's a BIG list! Start w/the top intro's? Differences between Myopothies and neuropathies etc...testings and all of it!
Then? Zero in on some maybe diagnoses... Good luck and don't give up!
http://neuromuscular.wustl.edu/alfindex.htm
Hugs etc. :hug::hug::hug:!!!!!!!!!!! - j

Quote:

Originally Posted by SARAH2233 (Post 747034)

please can anyone help

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Hi, I'm new here and have a big worry with wierd feelings in my feet. The tops feel like theyve gone to sleep - but they haven't - and feel stiff, very tight, like they've got glue spread all over them. This feeling is spreading up my legs at the front of them, not the backs. It's not painful but it started a few years ago and I thought it was due to osteoarthritis in my back but my GP says it's not as it's in both feet. He sent me for blood tests and they all came back negative - as he said he thought they would. It's like the feeling when you put a face mask on and your face goes all tight. That's how the tops of my feet feel and in bed at night it seems to be all round my ankles and the lower part of the front of my legs as well. It's horrible. I am so worried. When I saw my GP he said it was probably peripheral neuropathy and didn't seem in the least bit worried. At the time I told him that I felt like I was walking on lumps. He nodded and said it sounded like PN. I feel like giving my feet a really good stretch but sometimes that makes this weird feeling worse - that is to say even more tight. I've searched this on google and NO-ONE anywhere has these symptoms. That is why I'm so frightened. Please is there ANYONE on here who also has this? Please write to me if you can help. Thank you, Sarah.

hi sarah yes I know exactly what you mean I call it cement feet and legs I also have a cement midrif and feel like I am walking on fine glass so many symptoms , I'm new here to night , also looking for answers so when I read your post I nearly fell off my chair I just wanted you to know somone elce has your symptoms

Quote:

Originally Posted by jistme (Post 749566)

Thanks for writing to me. It's so scary isn't it? I'm perhaps the oldest person on here being 68 and so worried that it might spread. For two years it's just been in my feet. This year it's in my calves. So far I've not experienced pain unlike a lot of people on here but I'm waiting for an appointment with a neurologist.

Hi Sarah,
I have the same symptom! is it peripheral neuropathy?

Quote:

Originally Posted by SARAH2233 (Post 747034)

Quote:

Originally Posted by ipp6 (Post 950818)

Hi Sarah,
I have the same symptom! is it peripheral neuropathy?

One of my primary symptoms is the stiffness described, the walking on lumps, etc. and I have hereditary peripheral neuropathy. But you should know that this thread is two years old. The best way to get advice here is to start a new thread describing yourself and your symptoms and any tests that you have had.

Welcome, Sarah.
I guess misery really does love company, because sharing with each other helps us all. Your symptoms, while individual to you, are not that different from things the rest of us experience or have experienced.
Hearing arthritis and nerve problems in the same sentence makes me think gluten intolerance may be causal, or at least making things worse. It's another avenue to research.
I don't know how old you are, or for how long you've been developing issues; probably longer than you may realize. Most of us are of the opinion that things really can get better; but it's going to take time. You probably didn't develop these problems quickly, so there's no reason to expect a quick solution.
Patience is very difficult when you're in pain, and when you're frightened. You do have a great community of support here. And there are truly knowledgeable members. Mrs. D. Glenntaj, and many other senior members can really help you in knowing what questions to ask your doctor.
Good luck,
Steven

From what i can make up from your describtion it liiks like small fiber neuropathy to me.
Do you this stifness on top of one or both feet?Did the symtomes in both your feet develop the same way?I am having simulair problems right now.The toes of my left starting get numb including the a part of the fore foot and I have this strange coldness in my left calf.
I think its a good idee to write a detailed report what is happening to you.this is something that I should also do myself