I am so scared
 

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,

Welcome. Symptoms of PN can vary quite a bit between individuals. Sometimes I get the feeling you describe on the tops of my feet, but seldom, and not nearly as severe as you describe. OTOH, I can definitely relate & commisserate to the walking on lumps. Mine feel like I have tissues or my socks bunched up between my toes and the balls of my feet.

Have you not been sent to a neurologist for testing/diagnosis for PN? Blood tests for diabetes may not always be the best indicators; folks here will attest that you should probably request a glucose tolerance test to be sure. A neurologist may do that as part of his/her workup.

Fear (stress) will not help anything. It will more likely exacerbate any symptoms you have, whether PN or something else.

Hang in there. You've found a good place with many knowledgable people willing to help you on this journey.

Doc

IF you are in a ppo plan? Get thee to a neuro?
 

Make the appointment tomorrow morning! With a Neuro...takes a while to get set-up w/one unless you've a super GP who can 'expedite things'?
Get copies of all your tests to date "for your records" To share with new neuro consult and expect definitely 'retesting' of those prior docs' tests. Docs don't trust other docs' tests.
Finally? Don't get scared yet? IF the numbness moves up your legs to more? Then let your soon to be seen neuro KNOW? I'll bet you'd be 'fit in, or set into a cancel spot'!
Please feel free to ask ME questions about my own onset, and I'll bet others will contribute constructively as well!
Can I ask? Did you have a bad cold or worse in the last couple of months?
THAT is what 'got' me!
Don't be afraid to ask questions! We've been not quite where YOU are? But pretty close or at times? Beyond!
It can make the 'Twilight Zone'? Look TAME! HUGS & Hope! :hug::hug::hug::hug:'s - j

Neuro Symptoms can be very Scary....
 

they are misunderstood by anyone (including Dr's) that have never actually felt them in their own body. Neruo sensations are not like "regular" pain, it is a frieghtening experience, I have been in the scared mode for almost 2 years. I am just coming down from it now.

You will find that no two people describe all of their sensations the same. But, I will say the walking on lumps part I have heard before in PN. As others have said, you need to rule out other things though, by going to a good neurologist, he/she will give you a lot of tests.

Try to get through each day, one at a time......even one moment at a time.

Stay on this site, we understand.......as I am writing this, my feet feel like a sparkler is hitting them......so please believe, we understand.

Welcome to NeuroTalk.

Have you been to a good podiatrist who can rule out mechanical issues with your feet, neuromas, sesamoiditis, pronation issues?

What kind of footwear do you use? Tie shoes? Pressure on the instep from tie shoes can be avoided with an alternate lacing strategy:

https://www.northcoastfootcare.com/p...echniques.html

The site above is just excellent, so read up over there.
http://www.northcoastfootcare.com/

The foot is very complex and compression can happen there.
Tendonitis, arthritis, too.

Continuation
 

Thanks to everyone that replied. I am going to see my GP this afternoon. I am positive it has anothing to do with my footwear. A few years ago I was diagnosed with osteoarthritis - quite bad - and round about that time I felt as though I was walking on cardboard lumps. But I put it down to my back condition. But when that walking on cardboard lumps got worse and the tops of my feet started to feel stiff and tight I mentioned it to my GP who said it was probably PN as my circuation was 0k and it was definately not my back as it was in both feet. That was 3 weeks ago and what is frightening me is the feeling of tightness/covered in glue/ fat numb toes is creeping up my shins. It's there in my feet still - I seem to have a numb patch at the back of my two littlest toes on the ball of my foot -but that tight numb feeling seems to have gone quickly from around my ankles to up my shins. I feel it mainly at the front. I'm scared that it will spread all over my body until I cant feel anything at all. God I am so scared. I will tell you what my GP says this afternoon.

i'm finding that my symptoms are worse when i am tired. i am finally seeing the local neurologist tomorrow instead of next week. they called to see if i could come in because they had a cancellation. i'll be there bright and early. hope he can make sense of all these weird problems. i'll let you know what happens.

Good luck!
 

Best thing to do now? Is keep a diary of where the numbness/pain ends up the legs or arms. Trust me, this 'measurement' can be either fast or slow.. IF fast? You mite have to go to an ER and then? You could be stuck w/the neuro on call...that's what happened to me and I got one of those docs with the 'attitude' that it's 'just PN'! As it got above my elbows and almost to my torso..? I went and got a second opinion...that saved my life I firmly believe!
So? Don't get and stay scared like a rabbit? RUN like a rabbit to learn as much as possible and find one of the better neuros to give you that critical 'once over', plus critical tests that get you diagnosed and treated in the end...if possible. Good luck and DON'T PANIC! It's ironic, but fear='stress'? Can make it worse. Learn relaxation therapies and find one either mental or physical that helps you calm yourself... until you KNOW what devil you are dealing with.
Hugs and hope and don't give up!!!!!!! :hug::hug::hug::hug:'S - J

Hi Sarah, sorry to hear but you know apparently many millions world wide have it, hard to believe as even after a few years now, sometimes feel like Im the only one. Thats why this forum is a good place to be it truly helps with stress and great info as well.

"it was definately not my back as it was in both feet".

May i ask how you came to this conclusion?

cheers, chin up..

Hi Sarah,
I know the feeling you are experiencing as if my toes are super glued, I have pins and needles and pain going from my toes to the top of my legs as well as my head and hands and other areas. My dx is probable small fibre peripheral neuropathy, my first neuro was useless an am now seeing a new female neurologist who is lovely who is doing more tests.
Neuro Talk is great and the people are lovely and you will find this site very useful.
Good Luck.

CONTINUATION (have seen doc)
 

Zorrro, my GP said it was not related to my back as it was in both feet and now ankles and shins. He said if it was related to my back it wouldn't be in both feet....Saw him again yesterday and he said he'd refer me to a neurologist as he was a gp and couldn't say why I was getting these symptoms = which is fair enough. Last night I got a bit of burning in my feet but it passed. Today it feels like I'm walking on lumps and my toes are really puffy and can't bend, but they can. Doc has given me citalopram as I just don't feel like facing each day. This isn't me. My feet don't feel "real". What I'm most scared of is this feeling going right up my legs. Also yesterday I cut my toe accidently but it didn't hurt. That was frightening to. My gp said it isn't a brain tumour as that is what I'm, most frightened of. The neurologist appt will be in a few weeks x

Sarah, before you see the new doctor please read this thread, on drugs that may cause PN:

http://neurotalk.psychcentral.com/thread122889.html

If you have taken Cipro or its cousins in the past, Flagyl, or are taking statins now, this needed to be considered.

Doctors may not take this into account when evaluating you.

When you go to the new doctor request blood work for B12 and Vit D. Fixing these when low, often leads to improvement.
Don't accept "normal" from your doctor, get the numbers and come back here and post them.

Also get thyroid testing. Low thyroid can cause numb feet (this happened to me when I was 30). This is because tissue under the ligaments (see the link I gave you) swells and compresses the nerves in the top of the foot.
Plain old edema (from heart issues or kidney issues) will swell there too. Anything that causes bilateral swelling in the foot can come from the heart or kidneys. Often an ultrasound of the heart will show more than just an EKG.

Cipro and thyroid
 

What is cypro? My thyroid levels have always been ok. Ive had them tested a few times in the past year due to one thing and another. I'm on thyroxine 75mcg and have been for a number of years due to hypothyroidism but my results have always come back negative for problems. ATM i'm taking only citalopram for depression but only started this yesterday. And my feet haven't swollen thank goodness!! Thanks anyway for writing to me x

went to neurologist today and he thinks i may have small fiber neuropathy. he had a patient a year ago with the same symptoms as i and he sent her to a sfn specialist in rochester. he now has a list of things that were tested on her for her dx. today i had tons of blood work drawn: cbc with diff. with plat., sedimentation rate, complete metabolic panel, vitamin b12, folic acid, 25 OH vitamin d, thyroid antibody panel, lyme disease, ACE level, ANA, serum prot. electropharesis, immunofixation elect., anti RNP, anti SSA and anti SSB, serum immunoglobulin ? fractions (can't read that one too well). i was tested last summer for lyme disease. i had the classic bulls eye rash on my shoulder and full joint pain making it difficult to walk. i was given the antibiotics for it and it cleared all that up. problem is i didn't take the lyme test until everything was already cleared up, oops. i'll repost when i find the results of the blood work. he also ordered emg's for both legs. i already had both arms and they look good. he said depending on what the blood work and emg's show he may order more tests from his list. finally got a doctor who listens. i'm not liking what i have read online about small fiber neuropathy. it's basically pain control. will i ever be able to do the things that i used to, like work as a nurse, do my crafts or even make supper without having someone else have to finish it for me? till then i guess the mask on my face, stiffness, numbness and incredible ache in muscles are going to be around for awhile.

Sarah & Snookie? Yep its scary along the way? But
 

If you didn't eat too much junk food before THIS awful roller coaster ride, you'll be OK!
Sarah? Have you had your 'autoimmune T3 & T4 levels' tested? I'd been hypo for a dozen plus years and then it all went sideways! That was happening concurrent with a pneumonia and that use of 'antibiotics' which all caused havoc in a 1,2,3 sequence...took a year to happen? Took 2 years to diagnose [Hashimoto's] ! Don't take it litely... can you go see a good endocrinologist? These docs 'DO GLANDS'! And, nothing but...so they'd see things a GP mite not?
Snookie? Sounds like your doc is not doing 'just' the basic testing. Good for you and thank him/her! That you'd been tested for possible 'Lymes'?' Could make things more complex or maybe, because of prior testing? Easier.
Both of you? Keep your heads clear as you can and LEARN as much as others here have to offer! And then? Avoid PANIC at all costs! Keep it all in perspective? YOU can still walk talk and eat! You are not on a respirator or worse? Soo, fight for what you've got? HARD. And don't ever despair, if you do? Folks are here!
:hug::hug::hug::hug:'s!!!!!!!!! - j

Thanks so much
 

Yes I'm so glad I'm on this site. Thanks again to everyone whose been kind enough to reply. Will keep in touch x

Snookie--
 

--Lyme is a known generator of neuropathy, even if the infection was "cleared up". It is, of course, notably difficult to accurately diagnose Lyme---it likes to hide, and mutate, but if you had a positive diagnosis, it's certainly possible that a lot of your neurological symptoms stem from this, even "post-Lyme" (if, you are indeed post-Lyme--it is also difficult to completely eradicate).

You should search out some of the post by Lizajane here, who has gone through her own battle with Lyme, concurrent infections, and misdiagnosis. And also take a look at the Columbia University Medical Research Center for Lyme and Tick-borne diseases:

http://www.columbia-lyme.org/

And Sarah--
 

--I don't know why a doctor would dismiss foot/leg symptoms as not coming from the back/lumbosacral spine just because the symptoms are bilateral, as so many types of degenerative disc diseases and other compression problems of nerve roots from the spine can lead to such symptoms; MRI of the lower spine is supposed to be on the short differential diagnosis testing list for such symptoms.

Symptoms of spinal/nerve root compression can be exactly the same as those resulting from a more systemic condition that effects the lower extremity nerves.

Since I had the same experience - repeatedly - my SWAG would be that someone is teaching them that. But I'm with you on your point.

Doc

Thats why I asked. sounded odd to dismiss it on that basis.

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
 

it is scary....

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

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

Has it spread?
 

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?

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