Numb Fingertips

10-14-2016, 06:17 AM

My daughter's Rheumatologist is starting her on Plaquenil for possible Lupus due to extremely high ANA (Centromere 1:1280 and Homogenous 1:5120) and symptoms...rashes, hair loss, etc. She has not started the Plaquenil yet. We just got the Rx yesterday and will be picking it up from the pharmacy today. Her blood work doesn't correlate with it yet but I've been told by a couple doctors that it can take years to show up in the blood work. One weird symptom she is having that no one has even TRIED to answer is her numb fingertips. A few of her fingertips go numb randomly. She tries to rub the fingers together to get the feeling back. We told her Rheumatologist and Neurologist (seeing for sudden on-set of tics) about it. Both had a puzzled look about it and never mentioned it again. She does NOT have the changes in color of her fingers, just the numbness. I asked her if the fingers hurt or if they felt like pins and needles. She said she just can't feel them when she rubs them together. Any ideas? Thank you!

10-14-2016, 10:26 AM

Typically the numbness that is sometimes experienced in Raynaud's is accompanied by colour changes due to blood flow differences during an attack, or numbness can come from damage to nerves as a result of insufficient blood flow over a very long period of time, as in decades. Hope this helps you and get well wishes for your daughter

10-14-2016, 10:36 AM

Thanks. I don't know what it could be from. The numbness came along at the same time the tics did so I don't know if they are related. She just has so many weird things that make no sense.

10-17-2016, 08:17 AM

Quote:

Originally Posted by daniell77

Thanks. I don't know what it could be from. The numbness came along at the same time the tics did so I don't know if they are related. She just has so many weird things that make no sense.

It's common in lupus to have symptoms of peripheral neuropathy in fingers and feet. This may be due to vitamin b12 or folate deficiency. This is treatable with supplements. Any of her drs can check those levels, plus a TSH, as thyroid problems can cause peripheral neuropathy as well.

10-17-2016, 12:18 PM

Thank you! We haven't had her vitamin levels checked except for her Vitamin D and iron which was good. I don't believe they have checked her TSH in a while either. I'll have to discuss that with them. Thanks again!

11-08-2016, 01:54 AM

Danielle77,
I've been dealing with numb fingertips and toes in the colder or damp months for years now and I find nothing works to stop it. gloves nor mittens work for me. So I run them under warm water to heat them up. it's a horrible nuisance to me and I play the classical guitar which is really a problem because of the raynauds. I have to catch it before it begins so to speak.
what I was told by my general md. at the time is that the small capillaries go into spasm. smoking cigarettes makes it worst which I'm not assuming your daughter smokes. it's what he told me. he rx'd blood pressure meds for me and told me it shld help with both the raynauds and my hypertension.

I was told I had it back in 1998 right after my divorce . it started out as very painful and my fingers would change color which is called blanching.

My feet now turn bright red all the time, even in summer and the inside of my hands and fingers do too. My toe nails are damaged due to having the raynauds so long. I go to a podiatrist to do my nails and even had the tested for a fungus on them. but he did a biopsy and it turned out negative.
He told me never to go for a pedicure because I'm more apt to get an infection so I go to him for him to do my nails.

I'm tired of people always telling me my hands are cold when I touch them.
I have some type of an auto immune disease but have yet to go to a referred rheumy dr. due to being sick of going to so many dr's years ago.

You can try to buy her wool gloves since I did try a pair of wool gloves the other day and it worked a little while.

Good luck to you and your daughter. I wish you both good health and a cure for her lupus and other odd symptoms. having an auto immune diseasae can cause a host of weird symptoms.

11-09-2016, 12:08 PM

Thank you! My daughter is only 8 years old so she isn't smoking. She was on 3 blood pressure medications for a year due to renal artery stenosis but that has been fixed and she is no longer on those medications. They only thing she takes is Plaquenil. At this time, she isn't getting the color changes of the fingers and toes. She's just getting the numb fingertips. When I say her fingertips, I mean the very ends. She can feel most of her finger but when it comes to the very tips, they are numb and it's only a few of her fingers. It's so strange. She has had peeling of the skin around the fingertips which is also strange. I've also noticed recent peeling around the toe nails which I haven't heard of either. She does have a lesion on her leg that her pediatrician treated for Ring Worm but when her Rheumatologist saw it after almost a month of treating it, it had spread out on her calf and was inflamed. I don't believe he thought it was Ring Worm. I didn't even mention it to the Rheumatologist because I thought it was Ring Worm. He saw it and asked how long she had it. Just when I think the lesion is gone, it tends to get inflamed again. The pigment has gone away in that area and there's still a little rough spot in the center of it. Is that normal? Thanks again.

11-10-2016, 03:44 AM

wow Danielle, Your daughter is very young and I'm so sorry to hear she's going through all this at such a young age when she should be feeling on top of the world with the energy children have. Does anyone else in your family history have any type of auto immune illness? did you ask them yet?

My mother had something but when she died I tried to get the info from her Dr. and I couldn't. it was too late. Her toes were so gnarled that she could only find one pair of shoes to fit her feet and in winter boots. she was bent over in an L shape, at her waist. she used to be straight when I was younger and her knees bent inwards. The family thought she had the typical osteoarthritits but after she fell and broke her hip and was in recovery room and the surgeon came out to tell me how she was he was very rude to me as if I wasn't taking care of my mother and that she had something wrong with her and that it wasn't osteo. I don't recall what it was he told me she had.

My youngest daughter age 27 now has scleroderma and she gets these pink patches on her elbows and her entire arm looks tight and feels tight where it squeezes her arm she says. he can't go in the sun light because of it.
she only went to see a rheumy once and had a very bad experience with the Dr. so has never followed up. she feels ill most of the time and is constantly complaining to me about when I see her but she never does anything about it. The skin looks pearly like.
I'm not sure what the rash is that your daughter had, but I've heard there are multiple overlapping auto immune illnesses that can go on in the body which sounds like your daughter is having.
My older brother has a very rare bone disease called "Gorhams" disease or "vanishing bone" disease. he's going to give his body to science so he can help the scientists find a cure for it. he's had it most of his life and is on pain meds to treat it.
so my point being, autoimmune illnesses but in different forms run in my family like crazy.
I don't know if ring worm would leave a rough spot on the skin as you explained. but you never know what it was she really had. dr's just go by what they think it could be and aren't always right with their diagnosis.. not unless they did a scraping or biopsy of your daughters rash could they definetnly tell you what it is.
You are a strong and loving mother and I send you blessings. I wish good health to your daughter and that she gets better, Please keep us updated.

11-10-2016, 06:56 AM

Hi. Thanks for the reply. Yes, she is very young and that worries me for the future. I know it can only get worse as she ages. I believe we are catching it early because she started with the hair loss which was terrifying for me. Her dermatologist wanted to do steroid injections into the scalp but because she is so young and has already been through so much, I opted out of that. She is now starting to add symptoms like the rashes from head to toe and the lesions. I noticed last night that the pink scaly lesion on her calf seems to be coming back and I know ring worm doesn't do that. It's patchy, not a perfect round circle like ring worm. Ring worm also doesn't bleach the skin that I know of. I've noticed that when the lesion is gone, if I look at her calf from a little distance, it looks kind of pearly or shiny. You can notice it more at a distance because she's pale and it's not as easy to see up close unless you are looking at it in a certain direction. That's why I say it's bleached her skin. Her skin is white in that area now. Oh, and it was a nurse practicioner with her pediatrician's office that thought it was ring worm and treated her for that. The lesion started to spread out and get more irritated looking. We tried to cover it with skin colored bandaids because we didn't want people to question her. We saw her Rheumatologist a month later and from his reaction, I could tell he didn't think it was ring worm. That's when he said he was putting her on Plaquenil 200mg. Her skin is getting really dry and cracked looking due to the changes in weather so I've been putting coconut oil on her legs and elbows. Hopefully that will help with the lesion on her calf. Maybe, maybe not. It's just a watch and see kinda thing. Her dermatologist did a biopsy on a weird cafe au lait spot that showed up on her knee over night. It looked like it had been there all her life and no one believed me that it hadn't been there until I showed the doctors pictures of her from the day before which proved to them that it was not there. I put her to bed one night. Nothing was there. Woke her up the next morning and being so freaked out, I thought my child had melanoma. haha. The dermatologist did a biopsy which showed "Post-inflammatory hyperpigmentation" but she didn't know why because there was no signs of her falling, hitting her knee or scraping it. It was a smooth "cafe au lait spot". The spot didn't just fade away. It went away the same way it appeared...overnight. It was there then it wasn't. CRAZY! Still to this day, no one can explain it. If I didn't have pictures of it, I would have thought I imagined it myself. The only autoimmune diseases I know of in my family is my sister who has Type 1 Diabetes and my aunt who has RA. I don't know when she was diagnosed with RA though or how long she has had problems. I haven't asked anyone else. I guess I need to. I'm just not really close to my family to ask them personal questions. I really appreciate your replies. I need all the help in this situation I can get. Thanks again!

11-11-2016, 03:08 AM

Danielle,
I can't imagine what you are feeling seeing her go through these things and the drs don't know what they are. I just read somewhere that if the finger tips are numb it could be vascular. does she have it 24/7?
also, be aware that auto immune illnesses take FOREVER to get a true diagnosis of because they overlap others and sometimes there are no true blood tests for them and the Drs have to go by the amount of symptoms. So it could take many years before she's diagnosed. It's awesome that you are staying on top of everything and watching signs of change on her body very closely. I would have the Dr do a skin biopsy from a skin dr. if your daughters shiny patch doesn't go away. they can determine what it is she might have. a dermatologist.
Regarding Your Aunt if she's your full blooded Aunt, and not just by marriage to your uncle, who had he RA, could be a possibility of why your daughter is ill. It can come from one of our ancestors for sure.

it's all about DNA and Dr.s don't know enough about DNA. but the scientists do.
can I ask you a question re: the hair loss? when You say she's having hair loss which freaked you out, how much hair and where is she losing the hair on the scalp? is it every day or just when she showers? is it coming out in batches or does it show empty patches on the skull where the hair came out? or when you brush it?
I hope you can get a diagnosis sooner than later. sometimes these auto illnesses go into remission you know. which could happen to her. it's hope.

11-22-2016, 06:44 AM

Hi lintek55. My daughter doesn't have the numb fingertips all the time. When it does happen, it lasts a little while before returning to normal. Her pediatric Rheumatologist started her on Plaquenil a little over a month ago. My aunt is my full-blooded aunt. She is my dad's sister. My sister has Type 1 Diabetes. My mom has cancer for the 3rd time. I know cancer isn't autoimmune but it's genetic. My daughter is having genetic testing done due to possible Neurofibromatosis. She has multiple cafe au lait spots. We just got back from Disney World so of course she was in the sun the whole time but I used sunblock. She had some redness going across her cheeks and across her nose. The redness went away but now she has a large hyperpigmented area on the side of her face. I would describe it as a large "cafe au lait looking area". It kind of looks like a large sun spot that would occur on the faces or skin of the elderly that have been in the sun all their years. It wasn't there before we went on vacation. I hate to think she will get these pigmented areas every time she gets in the sun due to her young age. I don't know if it would be due to the autoimmune or point to NF. As far as the hair loss, it started over a year ago. I went to wash her hair and a large chunk of hair fell out in my hand...almost like a chunk was cut out of her hair. I kept washing her hair and putting the hair to the side. It kept coming out in chunks. When I got her out the bath tub, I checked her head and she had bald patches on her scalp...a couple in the back and one on top. This continued. Her pediatrician referred us to a dermatologist. By this time, the balding patches were growing larger in the back of her head. Dermatologist wanted to do steroid injections but I opted out of that. The patches grew back over time then it happened again a few months later. Those patches grew back and now her hair is just thinning all over, mostly on the left side of her head. The hair on the left side is thinner than the right side. I showed pictures of her hair loss to the Rheumatologist and because the hair is thinner on the front left hand side now, he thought the pictures were of that but they were actually from the bald spots she had previously. He thought her hair had improved from those pictures but they weren't of that area at all. What he was actually seeing was the hair she has been losing and has thinned out. My daughter doesn't complain a lot if she can help it. Since we were walking a lot at Disney, I knew this would be a test. She did complain of leg pain but as soon as I mentioned Tylenol, she decided she felt fine. haha. She HATES medicine and she will put up with anything so she doesn't have to take it. It was the same when she had kidney surgery. Doctors had to hook her to a pain medication IV because she wouldn't take the medicine so her blood pressure was rising due to pain. That was the only way we knew she was in pain. Her blood pressure would raise when in pain and go down when the meds started working. Due to this, it's sometimes hard to gauge her symptoms. I have to watch real closely. Thanks again for your reply. Anything and everything helps.

Numb Fingertips

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