Connect
Anybody else have these weird symptoms?
I've had pins and needles on and off for the past year, started in the fingers and toes, moved to the hands and feet, sometimes a vague minor numbness up my left calf. No pain, and I can function ok, but something's not right.
I've also had some really weird neurological symptoms which I believe are related:
Sometimes when I wash my hands, they get colder than they should, as if the water were rubbing alcohol. I've done some googling and can't find any reason for the cold hands, although there are plenty of hits for just cold that doesn't have anything to do with water.
A few times in the last year since this started, my tongue felt tingly, like I'd licked a battery. Just the electric symptoms, no taste. This sensation dissipated after a minute or two. I've found some stuff online, could be anything from pregnancy (not!) to a stroke (not), etc. Or from nerve damage which I must have as I have other symptoms, but I couldn't find a specific diagnosis.
Once when I woke up, a good part of my scalp was numb, it itched a little and I could feel my fingernail scratching it but it did not relieve the itch - like my mouth when I've had novocaine. I only had the sensation once, about six months ago. This sensation dissipated after a minute or two. Google shows "scalp dysesthesia" could be from small fiber neuropathy etc.
Sometimes when I'm wearing socks and sneakers, especially when feet get wet, it feels like there may be wrinkles in the socks but there aren't. I don't get this when just wearing socks, or socks and crocs, or flip flops, or bare feet. Google shows that this may be a symptom of small fiber neuropathy. Has anyone who's been diagnosed with small fiber neuropathy get these symptoms? Or the scalp itch & numbness above?
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
@leeisme
I have Peripheral Neuropathy and what you’re describing sounds like what I experience. Parts of the bottoms of both my feet are numb, and sometimes it feels weird like I’m wearing socks when I am not…
The scalp issue I have is due to Occipital Neuropathy. It also causes pain in my face.
My hands and feet hurt and turn color when they are cold. That’s Raynaud’s disease.
Have you seen a neurologist yet?
-
Like -
Helpful -
Hug
2 ReactionsHi Susan, yes I've seen a neurologist and he's an idiot. (See my previous post 'pins and needles')
I've got peripheral neuropathy, but don't know the cause. Based on symptoms and online research, I don't have Occipital Neuropathy or Raynaud’s disease.
Small Fiber Neuropathy seems most similar to what I have (again, based on my online research) but I really need a competent neurologist to diagnose it.
Has anyone been diagnosed with Small Fiber Neuropathy, and do you have similar symptoms?
Or, has anyone with similar symptoms been diagnosed with anything else?
There is a Facebook group for people with Small Fiver Neuropathy. Many people with Small Fiber Neuropathy have PolyNeuropathy. I am one of them. I didn’t realize many of my other symptoms were related. You can Google this.
My Autonomic Nervous System issue with IBS, many UTI’s. Fainting came first. It 72, I learned I had defects of genes related to Charcot Marie Tooth and Small Fiber Neuropathy. I was glad to know but still no real help.
-
Like -
Helpful -
Hug
1 Reaction@leeisme
At first I was diagnosed with small fiber neuropathy.
About 2 years later the diagnosis was changed to large fiber neuropathy.
I felt the same with small, and large. There was nothing I could discern from my body that showed me the progression.
I can’t give even one example of something that changed.
Change to a different neurologist if you have that option.
I have a couple more symptoms that may or may not be related:
About 5 years ago, I noticed that my left foot started getting swollen on long drives - I loosened the shoelace or took off the shoe and it was fine. Actually it didn't even look very swollen, just that the shoelace felt tight. As I rarely made long drives, and there was an easy fix, I didn't think anything of it.
Since my neuro issues started a year ago, especially in the last 6 months, I've noticed that my left foot has these symptoms more often, and not just when I'm driving.
My left foot is where the pins & needles and neuropathy started, and it (and now my right hand) has the strongest symptoms.
Also, I've had hot flashes since menopause started, although I haven't had a period in 8 years. I know that this can be normal for some people, but google shows that feelings of heat and cold can also be symptoms of neuro issues.
Does anyone else have similar symptoms?
@leeisme do you have varicose veins in your left leg?
If so, that could be the cause of your swollen foot.
Hi, I was diagnosed with MGUS 18 months ago. The neuropathy in my feet, I was told, related to lower disc replacement. It has now gone to my hands and arms. I have been experiencing severe night sweats for years. Recently I have begun having hot flashes. Like yourself, no menstral cycles in 8 years. I don't know what the sweating is about, or what it is related to. It seems I have to fight for care, and I am here and other places searching for answers. I have a new haematologist appointment soon. I am hoping that it will result in answers to my questions about symptoms, and referrals, to a neurologist and rheumatoid doctor so that I can begin treatment for these problems. Glad to be here! I am trying to educate myself, learn from others experiences, and hoping to begin treatment for these problems, before they become worse. Best wishes! 🙂
-
Like -
Helpful -
Hug
3 ReactionsEn comunicaciones anteriores he leído pacientes con neuropatías de fibras pequeñas.Perp no sé cómo se pueden recuperar comentarios anteriores.Inclusive leí hace un rato sobre un paciente que después de exámenes han descubierto que es el último de la familia que después de 5 generaciones portadoras de un gen causante de este problema,es el el último que lo portaba,ya que sus hijos no lo tienen.Pero no puedo encontrar ese comentario que me puede ser muy útil.Si alguien lo leyó y puede
ubicarlo, agradecería que lo hiciese.Gracias.
View Translation
Hi @mecha, I think the post you mentioned is the one by @mjpm2406 here - https://connect.mayoclinic.org/comment/310996/.
There are a couple of ways to locate previous posts. If you know it's something you want to save, you can easily bookmark the post by clicking the 3 dots at the bottom right of the post and selecting Bookmark. Then when you want to locate it sometime in the future, you can go to your profile and settings by clicking the profile icon at the top right of a window. Then click your Bookmarks link at the left under your profile description.
I found the above post by using the new and updated search function on Connect at the top of every Connect page. I searched for "family +5 generations +gene +neuropathy" without the quotation marks - here is the search results link - https://connect.mayoclinic.org/search/?search=family++%2B5+generations+%2Bgene+%2Bneuropathy.
Notice that the search results link now lists my reply to your post at the top since it also contains the same search parameters.
Happy Friday!