SFN and motor skill problems??? Trouble operating mouse
 

I was recently diagnosed with SFN via skin punch biopsy after 4.5 years of bilateral hand pain.

Recently my motor skills to operate a mouse, e.g selecting text and double clicking, have deteriorated.


Anyone else experience this?

Hey there Bowtie :)
 

Same here. It got so bad three years ago that we bought an iPad, which works better for me, but has its own problems. My hands still go numb after a while, and holding it has never been completely satisfactory, but I was unable to type or use a mouse without pain and numbness so this is much better.
We were able to talk to a salesman at the Apple store whose wife has MS, with very similar symptoms and limitations to mine, and he was able to answer all my husband's questions about capabilities and ease of use compared with a laptop. He even recommended a certain case ( not an Apple product) which props it at different angles for hands free use.
It is not a solution for serious professional use, but unfortunately this seems to be a common symptom of advanced SFN.

My left hand/arm drives me nuts holding my iPad. I have it in a cover which enables me to "prop" it and with juggling and balancing act I can get it to sit landscape style but not vertical. I'm constantly shaking my arm and waving it about to try get relief. I've tried not using the iPad but I've become such a 4 wall prisoner in my home that the iPad is my lifeline to activities outside. I do go out on occasion if I have a destination but never go out just for the sake of it, not even to sit in the park across the street anymore. PN, Chronic Pain and Depression sure do suck the life out of you don't they.
Can I ask what was the product he recommended, I can't sit at my desktop anymore and we are considering updating our computer so maybe the tablet he told you of will be a mutual solution for mine and my husbands use....

I am sorry if that was confusing- I just have an iPad. The case was what the salesman recommended and it sounds like yours- it has an easel built in so that it can stand up, horizontally, but it isn't very stable, so I usually lay it on my lap.

Curious if using iPad/tablet triggers other symptoms
 

Hi,
I just stumbled across this post and wanted to know if hold and swiping tge tsblet caused burning in elbows. I have a strong burning in elbow and upper arm muscles from using my tablet along with numb fingers. Any indication what may be causing these symptoms? Thanks,
Emily

Emily, I have been following your posts and you have a lot of the same symptoms that I do. I can only encourage you to follow up with a neurologist and get a skin biopsy but given your family it sure sounds like hereditary neuropathy.
There are two main types, the first and most common affects the myelin sheath first, the second affects the axons. I have type 2, with severe SFN and muscle wasting. I get exactly the same sensations holding the iPad so I rest it in my lap.

Is the numbness more prominent along the last two fingers and up the arms? That is usually the first to go. Have you had an EMG/NCS?

Just to add that thumbs really do waste as do all of the fingers.

Hi,

Thanks for the reply Susanne. I have not had an EMG/NCS yet; I go to my first neuro appt. on April 27. Hoping that he starts to get the ball rolling once he hears my symptoms and how long they have been going on and not improving. It seems as though the numbness is in all fingers, but it's the pain that always catches my attention the most along with worn out wrists. I try to stay off my laptop because is really strikes the symptoms, but it is hard to stay off my tablet! I read, talk to friends, etc. on it. We can't just stop our lives completely! Drying and fixing my hair is also really tough, makeup is even rougher (lifting arm motions). What symptoms do you experience in your legs/feet?

Emily

My grandmother has lost use of all of her fingers except her thumbs. It is amazing, and such a blessing, otherwise she would be almost helpless. I am not sure if this is from the PN or RA. She is very stubborn and has just started talking about her symptoms to me since I have been so affected by this illness.

People that also might have chronic RSI's or Thoracic outlet syndrome often have issues doing hair and holding arms up for very long.
Always good to make sure there is no secondary condition or misdiagnosis.
With TOS and chronic RSI's nerves can be affected, and sometimes the blood flow also as both fit thru a crowded area in the neck/collarbone/ top ribs.

For more info see our Thoracic outlet syndrome forum & sticky threads there.
http://neurotalk.psychcentral.com/forum24.html

Hands-free computer . . .
 

For those having difficulty typing or operating the mouse etc. - have you considered trying 'speech recognition software' ie: software that enables you to operate a computer with your voice.
There are some available online (some are even free downloads) I'm sorry I can't tell you if they're any good - but there will be evaluations posted by others.
Hope this suggestion may help.

Many computers & laptop usually have speech recognition included in the operating system now.
Then all you need is a microphone, laptops may have that already if it has a built in webcam.

http://windows.microsoft.com/en-us/w...#1TC=windows-7

https://support.apple.com/en-us/HT202584

I have trouble with holding my hands above my head too, my hands go numb right away when washing my hair, putting on makeup, anything like that. Of course at my age I do less of that then I used to. When it first flared up suddenly on me about seven or eight years ago I went to physical therapy and it did help me regain some strength. If it is CMT the gain won't be permanent but I certainly helped me a lot at the time. My current situation has come on more gradually, and is just expected progression. In my experience sudden changes in strength or balance respond to therapy or are the cause of medication like statins and improve if the drugs are discontinued. Gradual changes are permanent.

I have always been clumsy and poorly coordinated, walking on the insides of my feet as a child. The numbness started in my early 30's with my toes. It really got my attention about six years ago as I began to lose my balance and sense of where my feet where, also I had no sensation of temperature or pain and I could no longer move my toes. It has continued to advance and a lot of my sensory symptoms, burning, etc are at thigh and hip level now. I have always had some leg pain but that got much worse a few years ago too. I walk with a hiking pole and have a wheelchair for things like museums and airports.

My sons are 28 and 30. One has numb toes, the other has weak ankles and both have hands and arms affected as you describe but neither has pain at this point.

Good luck with the neurologist.

do you know what you have? it sounds genetic, because your sons are also experiencing some neuropathic symptoms, around the same time you first noticed yours.

I have the same problem with elevating my arms with my SFN. Also with holding the iPad, numbness, pain-in hands, wrists, elbows. It feels like an overwhelming painful weakness and it can even make me feel like I could pass out if I hold my arms straight up over my head for more than a few seconds. For a while, it was impossible to put dishes away in the middle and top cabinets. I can do it now but it has to be quick and not more than a few things.
I'm wondering if any of you have terrible neck spasms and shoulder pain with twitching and buzzing. That is one of my most major problems.

Yes, I know exactly what I have, it is CMT type 2. I do not know the variant because my neuro at Hopkins advised against further testing as it is untreatable. I wasn't asking for help I was simply answering Emily's specific question.
I have received enormous help and support from this forum, but I came here with a diagnosis.
My symptoms actually began in childhood. Only my eldest exhibited symptoms then just a tendency to roll on his ankles and a slapping gait.

I am fortunate that I do not at this time have any trouble when putting my hands over my head, washing my hair, etc. Not to say that I will not have trouble sometime in the future. But no trouble now.

I never was clumsy or had trouble walking or any of that. Not until much later in life. Also, at this time my hands are not affected.

But then with CMT symptoms vary greatly even within the same family. And there are so many types of it. I have one of the most common types.

Thank you so much for following my post and trying to offer me advice and support, Susanne. It really means a lot to me!! I was going to PM you with a couple additional questions, but felt if someone else is going through something similar it would help them seeing these posts.

I cannot remember specific weakness or abnormalities through childhood, except me easily twisting my ankles. I was a gymnast from 5-16, so I was pretty coordinated and flexible. I am double jointed in my arms if that means anything...

These symptoms have came on pretty acutely, with the exception of the burning feet at night and maybe an alcohol intolerance. The burning feet had been going on for 6-8 months, maybe. I was likely tired and fatigued during that time too, but no huge red flags. The constant burning feet began Jan.26, within 3 days muscle weakness in upper arms and hands, and extreme fatigue, hard getting up stairs, etc. etc. The next couple weeks burning moved into my hands. I have the same issue with putting up dishes. It has gotten better because I trust myself to put them up now! I was making my husband put them up because I love my new, nice dishes from our wedding shower and would hate for my clumsiness to cause them to break! ;) I rest my arms, while using a computer/tablet by fully extending them. This seems to relieve the pain somewhat and I just switch arms every few mins in order to use my devices. I am not going to cause more damage by using them, I hope?

Within 1-1.5 months I started having all my symptoms.
Is this common in a CMT case? I thought symptoms came more gradually?

My next question is, will a neuro take this serious? Do you think in my case he is going to look deeply into my family history (my grandmother and dad are both in terrible shape and suffer from neuropathies, as far as I know both are idiopathic). My grandmother has hammertoes and dad has dropfoot (he has had surgery on his foot). Will a NCS/EMG show CMT or does this require genetic testing?

Thanks again to everyone for your continued support!

ive had PN for 14 years now almost. Large fiber confirmed via emg/ncs, most likely with small fiber involvement now too, though ive never been tested for that. From the beginning my arms would get very tired and heavy very quickly if they were raised at or above the shoulder level. i have to put them down for a few minutes to finish what i started. i might have to do that several times. i also drop things all the time now. I know mine isnt TOS because i have the same thing in my legs, quickly tired and heavy walking up stairs, running or walking any distance.

By reading this posts, it seems as though when I read generic symptoms online that fit CMT you don't quite fit into that category. I thought legs were impacted most in CMT and foot abnormalities seemed common, causing gait issues. And it seems your progression has been slow? I am not sure. I need to read back through some of your posts so you don't have to rehash all your symptoms. I guess I should have probably focused on "symptoms can vary greatly between family members" when reading online. Sometimes reading things online can be misleading, I assume. I need to start reading more scientific, peer reviewed resources and journals. And you are right, there are so many types and variants. I am happy you do not currently suffer in your arms or hands. My thoughts and prayers are with you. Thanks for your input in my case. :)

I am not sure I understand the buzzing symptom I hear a lot in this forum. Terminology can be tricky is this illness, at least in my experience!! I try to explain how I feel to others and a lot of time I just say "odd sensation", because everything just seems so odd and foreign to me. Like my arms, they feel like they are not connected to my body sometimes. I wake up and they feel mildly asleep, not numb, buzzing, just strangely awkward and heavy. I have had a hard time with my arms because I used to sleep with one under my pillow or above my head. I certainly cannot do that anymore, so I have started bending them at the elbows and placing them on my chest. I have the same problem with the dishes too, and like you said I now also do a few at a time and don't push it, or do it daily. I have moments (3-4 during the past two months) where it has been extremely difficult to raise my neck up from a laying position, terrible pain. Not sure if that is a spasm, more like a sharp jabbing. My shoulders def. have muscle twitches, along with many other muscles in my body (side, arms, abs, calves, neck, back, lower jaw, etc. etc.) Not sure if this helps, but it is always good to have support and know people are going through the same health issues. I hope you have a good day today :)

I have been a member of this site for nine years and before that I was on the old forum. If I am reading your post correctly, that I don't quite fit the category, I assure you that I do have CMT. Family history goes back a long, long way. You can have symptoms when you are young, old, or in-between. Or you may not have any noticeable symptoms but you still can have CMT. And, yes, symptoms vary greatly even within the same family. I certainly can see that.

You can have flat feet, normal feet or high arches. You can have hammertoes but not all do. I do not. Hammertoes, drop foot, etc. can be caused by a lot of things. Many in the general public have one or the other. Also, I have normal looking feet. Not everyone has drop foot either. Or it may not be that bad if they do have it. Hands and arms can be impacted as well. Mine at this point are not but time will tell. The rest of the family going way back does have both hand, arm, leg and foot issues/weakness.

CMT progresses no matter what you do. CMT does not come on just like that and all of a sudden there you are. But CMT does progress. I have known about CMT since I was five years old. I have kept up with all the research that is being done - and there is lots - for many years now. And much was before the Internet. This information is all from reputable resources.

As far as EMG/NCV testing they can tell the type via the testing. When the myelin is damaged (CMT type 1), the nerve impulses are conducted more slowly than normal. If the axon itself is damaged (CMT type 2), the speed of nerve conduction is almost normal, but the strength of the signal is reduced. CMT is a multi-gene disorder and so there are many different defective genes which cause the disorder.

CMT affects the peripheral nervous system (PNS) and therefore it results in both motor symptoms (weakness and muscle wasting) and sensory symptoms (numbness). CMT is progressive no matter what you do. A neurologist who is an expert in CMT would be the doctor to see. I cannot say that you have CMT. Only a good neurologist can help you there. You certainly do have something going on. Hope you get to the bottom of it.

My buzzing is feeling like I have a low level electrical current running through my entire body. I wake up feeling like this just about every morning. It will stop as soon as I start moving around.

It will set in at other times during the day if I'm stationary too long. Again, moving stops it. For whatever reason, getting my motor nerves active will settle down this sensory problem.

Thanks for all this information!!
I did not by any means mean to come across as insinuating you didn't have CMT. I am sorry. I know you do! I was just stating that I am absolutely un-educated in CMT and most other neurological disorders because this is all very new to me. I just wanted to get the point across that reading things purely online or googling symptoms can be misleading for someone like myself that has not been researching or dealing with this for several years. I have by far gained the most experience and education from this forum, from people like yourself. And I am so grateful there is a forum like this available for people suffering from neuro symptoms and not knowing what the heck to do about it. I know that no one on here can dx anyone, but the support def. helps me and I know so many others like me!! Thanks for educating me in CMT and supporting me in finding some answers :)

Emily, with your symptoms I would expect an abnormal EMG/NCS. Once you have numbness in your feet and lower legs it will probably show up on a skin biopsy as well.
Some of my symptoms were gradual and ignored as just being clumsy, lazy, etc. I had a dysfunctional family situation which complicated things, it was in no one's interest to diagnose me with a genetic disease since I was the product of an adulterous relationship.
I did develop hand and arm weakness very suddenly about 8 or 9 years ago. I couldn't hold plates either, and couldn't take wash out of the washer, carry groceries, etc. it was diagnosed after an EMG as carpal tunnel, but this was later found to be incorrect as it was a flare up of the CMT. It is usually gradual but there can be exceptions. Everyone is very different with this disease as Kitt said and anything you read will probably make unwarranted generalizations. It used to be thought that pain was uncommon with CMT. This has been disproved and my pain is quite severe, but many sites repeat outdated information, even the Mayo site has lots of inaccuracies.
Physical therapy gave me back a lot of strength in my hands at that time. Later I lost range of motion in one arm such that I couldn't dress myself, again therapy helped. Last year I sprained my ankle and physical therapy allowed me to continue driving a little, I have virtually no motion in my ankles now, but can drive for about five minutes which takes me to the doctor, dentist, and food store.
The doctor should be very interested in your family history, if they aren't diabetic this must have a hereditary component. Your symptoms are perfectly consistent and should be taken seriously.
It took my podiatrist to actually get the ball rolling. He refused to treat me again after I went to him with a foot infection ( he did treat the infection ) until I saw a neurologist. He said I had the worst neuropathy he had ever seen and that bilateral neuropathy in both hands and legs wasn't simply carpal tunnel, especially with my other symptoms - high arches, tight Achilles' tendons, poor gait and balance, etc.. He thought that my height (6'2") made it all worse since it is length dependent.
Another thing that caused a sudden worsening of my symptoms was Tricor, a medication I was given for extremely high tryglerides. It quickly exacerbated my balance issues to the point that I could no longer walk without falling. I improved as soon as I stopped it on my neurologist's hint.
They should try to find out if there is a treatable cause for your symptoms, but CMT is progressive and incurable. My neurologists both said "good-bye and good luck." Chronic disease makes doctors uncomfortable. It is a relief to have a diagnosis and the progression is usually slow, but it is a big thing to accept, especially at your age. I hope they can help you.
I was extremely flexible when I was younger, except that the muscles in back of my legs were always tight, and so is my one son, although less so than he used to be. I have read of other CMTers with this trait.

I feel the same. Hard to stand on my feet too long. I have to set down. I am dropping things as well, but not all the time. I have to really concentrate on holding things and that helps. When holding a pen or pencil I feel I have lost some grip because I have to stop every few written words and pick up the pen, it slides down my hand. Thanks for letting me know a EMG/NCS will show up if I have motor involvement. I don't know if my weakness is clinical or "perceived". I am scared about my neuro exam because I don't want to be told it is just in my head. I hear so many people on this forum being told that. That is my biggest fear, I think. And of course the future, but for now I am trying to be as optimistic as possible because I know stress can make this worse. Thanks for your input. Sorry you have been suffering with this so long.

Hi there Emily,

Rarely would anyone have a perceived weakness rather than one that is there. You have gone from automatically writing etc., to having problems writing. A suggestion is to try to be as calm as possible during the neuro exam. Save your questions until the end and hopefully the neurologist will answer them.

A neurological exam is very thorough and will feel like you have really been examined. And stress does not help, but RARELY causes the sensory symptoms.

Unfortunately, my husband had to say, "I have known my wife for 20+ years and she has changed." Finally that helped with doctors starting listening. I had to act like I was not really hurting when I was so scared and in so much pain. Not getting enough sleep did not help either.

Oh, and if you are going to a teaching place, find out if someone is an attending/resident/or fellow at the beginning. They are supposed to tell you that, but don't always. You might be able to ascertain that from the provider's web site.

This is particularly important if they come in alone and then bring in someone else. Part of your story will be wrong, deleted, or confused with dates and or symptoms.

I am really hoping that you will be heard and that the neurologist you see will be professional.:hug:

Godspeed.

Emily if this has only been going on for 8 months it is possible that there might not be enough damage yet to show up on an EMG/NCS. Just to prepare you in case. this doesnt mean the symptoms arent real or caused by stress. It also doesnt mean that your pain or symptoms arent proportional to the damage you do have. It just means that an EMG/NCS does not have the sensitivity to detect below certain levels of damage. If damage to the axon or myelin sheath is detected by an EMG/NCS it may be categorized early on as mild or mild to moderate. Again this doesnt mean it isnt painful or debilitating.

I started out in October 2001 with symptoms but didnt have an EMG/NCS until October of 2003. By that time my PN was moderate to severe already. I was exposed to high levels of toxins for an extended period of time so no surprise there.

Even if your emg/ncs comes back negative now, it could turn to positive in just a few short months. I hope this helps.