Frightening experience with Somato-Sensorial Evoked Potentials

[RedFlame]

Hi There, This week I had all four of my evoked potentials done.  Visual, Brainstem and upper and lower Sensorial as well.

The two techs and I had struck up a good rapport and had been laughing and making jokes throughout the day.  

Then they came to the lower Somato-Sensorial part.  They had a lot of difficulty provoking an electrical response in my left leg.  They eventually found it although the response was small.  They had to hold the probe firmly to my ankle because it was difficult to get a reading.

Then we got to the right foot.  The tech placed the electrical thing on different parts of my ankle with no response.  She kept moving it expecting to get a response.  Nothing.  They both stood up and moved things around, still nothing moved.  They were whispering by this time.  The tech asked the other to increase the voltage/signal.  The other said “I already have it at max, I can’t go any higher”.  

It just felt like everything changed.  The brevity/mood of the day left and everyone was so serious, it was like someone sucked the air out of the room.  They worked on this for 10 minutes or more.  Eventually they found a spot they could elicit a tiny signal from if they squeezed my ankle as hard as they could.  The tech said OK there is something happening.  I felt a tiny tickle in the sole of my foot.  But I couldn’t feel the electric signal, and I couldn’t see the movement.  My leg began to clonus while they were trying to finish the test.

I closed my eyes and tears came down.  I had this horrible sinking feeling that maybe I don’t have MS, maybe it’s ALS.  Of course it’s not ALS.  I was so scared.  

I knew I didn’t have much feeling left in my feet but never really faced it like this.  I just don’t remember going so numb.   I don’t remember what it is supposed to feel like.  

MS became more real to me that day and it was terrifying.  I feel like my progression is aggressive and I am really scared.  I don’t know what to do.

Have any of you had similar experiences with the Somato-Sensorial Potentials?  Did your nerves respond like mine?

thank you
Red

[jujuminx]

I am so sorry.  It must have been frightening and worrysome.  Know that those of us here share in your emotion and wish the best for you.  I haven't been on this site very long but already feel a kinship with all of you. Just take it a day at a time (or hour by hour depending on where you are at).

Julie

[mamiJ]

Lois,

I wish you didnt have to go through that.  

I know from an experience during my pregnancy how much these techs can terrify someone...and what makes it worse is that they are not allowed to tell the patient anything.

I hope you can do something this weekend to treat yourself kindly and relax a little.

take care.

J

[RedFlame]

Ashley, thanks for your input.   I think that I will have a different experience next time I have to go through this.  It won't be a surprise and I won't respond in a place of fear.   Thanks  Red

[ashleyPT]

I cannot relate specifically to the fear you experienced or the techs mood changing, but I've had a lot of sensation loss in my left leg and when I had my evoked potential testing I could not feel the pulse and it was hard for them to elicit the response that they needed out of it. That was the reason I was there though, so it wasn't a surprise to anyone involved. I'm sorry you had this experience.

~Ashley

[RedFlame]

What a wonderful gift it was to wake up and see so many responses to my question.  Thank you for taking the time!

Lulu, I did let them know that there were areas that were some numb in my left leg and I could see some relief on their faces at that point.

By the time we got to my right leg I had become really scared.  The level of numbness was profound and covered much more area than I had realized.  I think the techs perceived my fear and were scared too.  

The level of realization hit hard.  Now I understand why she orderderd these tests even after diagnosing me.  She needed an objective way to substantiate the diffierent levels of disability.  

Perhaps she will need this data when it comes time to order the power chair or other device or service.

Quix,  I am going to give a little time for the report to be written and sent to her and then call with my concerns.  I always have a hard time calling doctors, I don't want to be a pain, but I'm getting better at it.
Sumana--thanks for the use of your gaurdian angel, I slept well last night so I am sending her back to to you.

Sarah,  thank you for thinking of me during this time.  I will let you know the outcome.  I hope that these will be the last tests for months to come.

JJ. Thanks for encouragment.  The techs eyes looked like deer in the headlights and mine probably did too.  There was fear on both sides. Hugs are always good!

Hugs to all of you!

Red

[supermum_ms]

Hey Red,

Big hug!! I cant say much about the tests but i really felt for you reading your post, didn't sound like the techs were expecting those results, and neither did you. No wonder you were scared, i think anyone would be.

[[[[[[[[[[[[[[HUGS]]]]]]]]]]]]]

JJ

[Sparkysarah]

I have been thinking of you while I am on holiday and hoping that you have got over this distressing experience. Try not to worry and I pray that the results come soon to give you some understanding of what is going on in your body. It is easier to accept something real than the unknown.

Big hugs Lois and be brave and keep that redflame glowing.

Sarah xxx :)

[Sumanadevii]

Red, I have sent my guardian angel off to you.  She should be there by the time you wake.  She will bring some strength and stand next to you.  When you are feeling better chase her off.  She will come home.

Hugs, Red, a big hug.

Sumana

[Quixotic1]

Group hug needed here.  I can't address what was going on in the SSEP.  Please let your doctor know that something was amiss and they frightened you.  Maybe he will seek out the results and get back to you faster.

HUGS

Quix

[Lulu54]

Red,
I wish I could share my experiences with you but I have not had these tests done.  Less than ideal test reactions can quickly change the atmosphere with these techs.  

When I do have  tests performed, I always try to let the tech know my areas of deficiency so they know its not a surprise to me.  Did these techs already know that you have little feeling in your lower limbs?   If not, that may explain the change of mood.  

Your moment of realization sounds difficult and I'm so sorry there's nothing more that I can offer than more hugs to add to what Helen has already sent your way.

hugs & more hugs, L

[helen41]

All I can do is send a virtual hug. I wish it was more.