Need advice! Hands numb 24/7 since 2010

hoggle
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Please excuse my "typing"

I have hypermobile Ehlers Danlos syndrome

I have had 24/7 numb hands since 2010. I hate pressing buttons, can't click a mouse, pinching motions etc. Wearing a blood pressure cuff causes my hand to claw up. I hold a marker in my hand to type which acts as my "finger"

3 different emg/ncvs between 2012 and 2014 were normal. Conducted at mayo clinic and Emory

Neck MRI in 2011ish was normal

I went to pt for roughly a year where they looked at neck/shoulders

Brachial plexus MRI in 2015 was normal

In 2020 I noticed my wrists were burning again using my cell phone, not just numb, but I didn't have health insurance.

In Jan 2022 had EMG/ncv which showed median nerve damage including apb wasting.

See below
https://ibb.co/qd1cQpG
https://ibb.co/6N1Sr7D

^ if for some reason those links don't work please let me know!

Had ctr on 1/31 in right hand then left hand in April

In April I had neck MRI/CT scan and brain MRI all normal

If my problem was actually carpal tunnel syndrome, a year later will my emg/ncv be better? At the very least it should not be worse?

ANY advice of where to go from here is appreciated. I was tested for autoimmune disease in 2017. Also small fiber neuropathy. I'm running out of ideas. Is it possible the median nerve can be permanently trapped in elbow? Am I being too impatient with ctr? Could this be ntos? THANK YOU.

hoggle
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*also I'm assuming a csf leak wouldn't show up on EMG/ncv

jeremydpbland
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No a CSF leak would not show up on EMG.

jeremydpbland
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I would be surprised if there was really APB wasting with those NCS results. The distal motor latencies to APB are only marginally prolonged and wasting is unusual without marked delay in motor conduction if the cause is CTS. The sensory results are odd - if the latencies are from measurements at 14 cm then the conduction velocities would be 35/37 m/sec but the sensory conduction velocity is given in the last column as 62 - which would be normal and again inconsistent with the motor studies. The EMG sampling suggests denervation in APB but this can also result from thoracic outlet syndrome, radiculopathy and other causes so overall I'm not sure what to make of those results. If they do represent CTS then it is fairly mild and should recover promptly (ie pretty much overnight) with surgery and the NCS results should be improved by this point. Have the symptoms actually changed at all with surgery? JB

hoggle
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Thank you for taking out the time to reply! I didn't think a CFS leak would show up but I was not sure.

2022 study was not Emory/mayo

Emory study 2011... dont have actual numbers just says normal to everything

Mayo clinic emg/ncv 2014
https://ibb.co/bBKscJg

Emory study 2015
https://ibb.co/VBv4tsY

My hands are just as numb as they were before surgery. My index finger is by far the most numb, it gets numb the further out to the tip, so like the fingernail is the most numb. And that has not changed with surgery.

I have been able to use my cell phone a lot up until recently. But I'm not sure if that's just because I avoided using it for a while? Basically it starts out with a burning sensation deep in my wrist. Here's a picture, I drew a line along where I massage it too much. https://ibb.co/mhLHbLg
I am avoiding typing at a computer.

On my left hand I can a tiny bit but with my right hand I hold a sharpie marker which acts as my finger to peck at keys. This was not always the case, this has definitely gotten worse over the last several years.

And then if it gets bad enough my wrist upwards feels extremely pinched. I'm barely at a computer and I recently had a horrible flare which I think is from being on my cell phone too much.

I've had my neck looked at a billion times, including physical therapy and I do not think it's that.

My brachial plexus however I stretched several times in 2010 and 2011 but nothing showed up in any test, including a brachial plexus MRI.

Is it possible to permanently damage your median nerve from stretching your brachial plexus and *not* have it show up on nerve studies but have it cause APB wasting.....years later? It doesn't make sense to me

Because I have a connective tissue disorder I thought the burning sensation might be a tendon issue. But I do not think that would cause this pinched feeling?

There's a doctor who knows a lot about connective tissue disorders and talks about median nerve surgery at elbow for heds but he doesn't accept my insurance and im skeptical to see him http://wbericson.org/index.htm

Do you know if there are any tests that would show thoracic outlet syndrome? It's definitely not vascular.

Would a wrist MRI be pointless?

What other tests would you recommend?

I'm not sure what I should do next... I guess another nerve study with a completely different doctor. I'm in the United States. And based on what you're telling me, I should get a second opinion but I'm not sure how I'm going to trust the second opinion!

Thanks again

hoggle
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Also if any of the studies are hard to see, let me know and I can easily upload to another host

hoggle
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Sorry one more thing
Years ago it felt like I had 5 pairs of gloves on. Index finger tip the most numb

In 2022 before surgery it felt more like 2 pairs of gloves but index finger tip is still a lot more numb

So that has improved but aside from cell phone usage I avoid a lot of activities

jeremydpbland
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The 2014 and 2015 NCS results are clearly normal. It's just the recent set that seem odd and rather internally inconsistent. None of them have looked specifically for neurogenic thoracic outlet syndrome. Brachial plexus MRI is difficult and whether you are likely to pick things up on that depends on the quality of the scanner, the scanning protocols used and very much the person doing the interpretation so it's impossible to comment on whether that would have picked anything up. The detailed description of the symptoms doesn't ring any obvious diagnostic bells with me I'm afraid but rather than spending money on tests I would be inclined to try and find a good neurologist to begin with. JB

hoggle
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I'm confused because Mayo clinic would test for ntos? I remember asking at least once...i think at Emory and he said by testing the entire nerve, he IS looking at tos also? I also remember ntos causing ulnar nerve issues which I don't have at all

My issue with ntos is there's a big difference between chronic compression vs stretching and I would think that'd result in different neuropathy. My scalenes and pec minor muscles don't spasm at all

jeremydpbland
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Classic neurogenic TOS is best picked up by looking at the sensory potential from the medial cutaneous nerve of the forearm - which they didn't do so far as I can see. The other supplementary findings tend to be thenar atrophy (hence the confusion with CTS) and sometimes ulnar f-wave abnormalities. JB

hoggle
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Okay thank you! I'll ask for the medial cutaneous nerve of the forearm specifically. And if they don't test it I'll just look for another neuro. I just wrote my old Neuro at Emory

I do wonder if some of the burning I experience is simply an irritated tendon as a separate issue from numbness or it's all one blanket thing.

Whenever I get new study I'll share here. My left hand was attacked by a dog 2 weeks ago which kind of set back my surgery healing and caused everything to swell again so I need to let that go down I would imagine

hoggle
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*the dog incident has nothing to do with pain...my right hand is still in much more pain

hoggle
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Update

I haven't been able to talk to my old old Neuro from Emory directly. He's booked a year out but he scheduled me with a resident August 3rd which leads me to believe he didn't trust the study either. Going to ask for medial cutaneous antebrachial nerve test.

I still cannot type at all. I hold a marker to type. I massage the area beneath my wrist 1 inch down and it occurred to me it's more on the pinky side. Basically that area gets this deep burning sensation and then it starts to swell up. I don't like gripping things like a sprayer. My left hand is much better... But I'm afraid if I use my left hand too much it'll turn into my right hand! These symptoms started 2020 unlike hand numbness since 2010. I guess I should say if they were there they were much much much milder. I definitely held a sprayer

So I also booked an appointment with an orthopedic rsi doctor. I want my tendons looked at bc of all the tendons that go through the carpal tunnel. I don't think for a second that's why my hands are numb but it could explain the weird burning which continues post ctr. It's in a very specific area and not diffuse

jeremydpbland
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An orthopaedic/hand surgery opinion is not a bad idea though ideally  you  should look for someone who is regularly dealing with post-CTD problems. JB

hoggle
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Yes, my original hand surgeon is actually good but I feel like I'm not going to get any new information from him. And I obviously had a bad experience with the emg/ncv

hoggle
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new hand surgeon barely looked at my emg ncv said it sounds like tendonitis (even tho I've had this for years??). Didn't think it was ntos.

I wanted an MRI but was referred to ultrasound for injections and astym physical therapy. I hope they don't mean steroid injections bc people with heds really shouldn't get them. And I just had my wrists injected in November

I have another doctor scheduled in case my pain is tendon related. Not a hand surgeon but a sports doctor who performs tenex which intrigues me. I'm open to physical therapy too, just not steroid injections

I'll be surprised if my nerve studies come back as abnormal when I do the follow up tests but I still want to rule out ntos. I really really hope they test that and I don't have to go around asking again

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