I survived all the testing yesterday. Quite an experience. The optical tests were my eyes focusing on a colored dot while all the surrounding space twirled and made different shapes. Then trying to focus on a colored dot while and extremely bright square of light filled the rest of the square. The technician, a very nice young lady was very efficient and courteous at the same time. We actually had a few giggles during the session. Then she stuck, and I do mean stuck with a sticky gel, 16 electrodes to my scalp, and the rest of my body. Then she applied to various places on one foot at a time an electric stimulator and turned it up until my toes were twitching and waving at her. She did each foot separately. My body's responses were recorded onto her pc and will be read to determine if my body responses are those like MS. I needed to bathe, but went to bed instead.. after a nap, was awake with my legs, feet going berserk from the testing and the long day. All is better now, bathed, legs and feet feeling better. Next month, MRI's of brain, cervical and thoracic spine with and without contrast dye.. get results of all April 18. 6 months since the last bunch of testing.
Doctor approved increase in Gabapentin, from 5 caps a day to 7.. It's helping somewhat with the tingling.
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CalfeeChick
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Yeh...the neuro-ophthalmology testing is long and tiring. I've had nerve conduction and electromyography testing but nothing like what you're describing...sounds like medieval torture
More waiting for results huh? So sorry. Glad the increased gabapentin seems to be helping some.
Oh CalfeeChick what an ordeal I bet your glad it's over. Thank you for letting us know. When I was diagnosed they found ms on my spine after giving me a MRI from falling off my horse, then the next day they gave me a brain MRI which showed my head was like a furred up kettle. Hence I haven't had any more tests, just MRI' s. I do not like them, I have had 9 so far. Hope you get good results, hugs Jimeka 🦋 🌈
I've had 5 MRI's since last summer, 35 vials of blood, 4 1/2 vials of spinal fluid. If nothing else, they are very thorough. I'm glad I have good insurance. Just hope we get thorough test results soon.
Why so many tests? Maybe I missed something but maybe you had a lot of symptoms but nobody knew what what it was? Seems like the best test for MS first of all would've been an MRI. Then if they didn't show any white spots go onto the next test. There's a lot of unnecessary testing going on in general these days costing everyone a lot of money and not necessarily coming up with the correct diagnosis.
The tech that performed the test, says that some people run out of there saying they never want to see her again. I just knew it was something I have to deal with to find out what's going on with my body. I probably shouldn't say this but I have a very high tolerance for pain, having experienced many broken bones thanks to my long-distance cycling, two back surgeries and a knee replacement due to arthritis. I will admit, I started to have an anxiety attack as we drove into the city but it went away quickly.
Oh you would not believe the havoc that bridge collapse has created. Not only a slight re-routing of the Big Sur Marathon, but my cycling group is scheduled to ride down the coast on HWY 1 beginning July 15. We are working on re-routed schedules and reservations for 65+ people now. All the tourists are also trying to plan new routes and reservations. I worked for AAA for years so know what's going on. For visitors to California, the Hwy 1 coastal route, SF to LA is one of the most popular. Now it's blocked for approx. 35 miles to Ragged Point. San Simeon and Hearst Castle are still open. We've had rain for a few days, and a beautiful spring day today. More rain tomorrow and over the week-end, Not heavy rain though. This would of been my 10th year riding down the coast of California, Santa Cruz to Malibu. 360 miles in 6 days! I went numb 2 weeks before the trip last year. I'm still a member of the group and it adds joy to my life to be able to help. I will go as a support person this year if I can get strong enough to withstand camping and allot of hard work. Riders have it easy, support works their tails off!
Oh CalfeeChick im so happy to hear you are still involved with the riding group! I would imagine it's tough to sit on the sidelines and experience things vicariously though.
My husband worked briefly for AAA here in Fla in market research crunching numbers. Really nice group of co-workers (and he liked their cafeteria a lot 😊)
I'm so glad for you that those tests are behind you. Please keep us posted on your results. I guess we have to gird our loins for exhaustive testing with this thing.
CalfeeChick, i've never gone though the nerve conduction testing before, but I do go to an extensive optimical exam next month. I hope the testing you under went will provide you with the answers you seek. I am glad it is behind you and i pray you receive good results.
I am almost 9 months into trying to get definitive diagnosis. I went numb last June 28. I dropped the first neuro because he just wrote me off after 1 mri. Literally, and I quote he said when he gave me the diagnosis by telephone, "I don't know what you are so upset about, you're 68 and have had a long life." I got referred to UCSF MS Clinic and started all over with detailed testing, MRI's, spinal tap. I got diagnosis in Dec. of MS because of a lesion on my spine. I have over 20 white spots in my brain, but doc said they may or may not be MS. Hence, additional testing and more MRI's next month to verify if there's been any changes since Oct. tests. I plan on allot more years to my 68, I have always been very active, athletic and am not ready to give up at 68. Up to and including the day I went numb, I was a long distance bicycle rider, averaging 150-200 miles a week. The last 9 months, I've not been able to be physically active, but I have stayed active crocheting items for family, friends and charities. Not giving up!
I will never forget my nerve conduction study 😢 . Took 4 ppl to hold me still. Trying to make me feel something in my feet! Dumba** Dr told me to was cause l was to skinny? WTF is that kind of cr*p? When l told the Dr. At the follow up he was not a Happ camper!
CalfeeChick, I had a similar nerve conduction test where they actually stuck things into my leg & drew blood. I remember thinking that this seemed like a pretty crude method of testing. Sure enough I was not diagnosed until a couple of years later. That neuro told me I had a pinched nerve or something.
I think that those of us who are used to being physically active have an advantage in fighting MS and that's one reason I strive to remain as active as possible. It's even possible that a high level of activity helped to keep my MS in remission, because I had numbness episodes in my 20s & 30s but was not diagnosed until in my mid 50s.
I had those nerve conduction tests last August. I'm only 9 months into this monster and having major numbness/tingling in my legs and feet. Was also in my ribcage but Gabapentin has helped reduce the symptoms. I think I want to be as active as I was, build up the energy and try. Then pay for it with increase numbness and tingling. Vicious circle. Appreciate your telling me about the test and your encouragement!
I had that optical test when I was first diagnosed. It showed a 15% decrease from normal showing an abnormal relay between my brain in my optic nerve. My eye doctor does an OCT test every year or twice a year which showed something very similar. She did she says as a screening test for glaucoma even though the regular pressure tests are normal. But I've been reading about OCT and actually does the same thing as the other test did measuring the electrical activity on my optic nerve. In fact last time I was there she says it was a little better. Maybe it's because I take 40 mg of routine which helps with blue lights so they say. But who knows? As far as all the other tests you had I only had MRI showed the white spots then diagnosis. Had one major relapse called transverse myelitis. Other than that I've been doing well for the past 12 years.my neurologist is not one I'm doing testing that he says won't make any difference so I have not had an MRI for at least 12 years from my first diagnosis. He said it would make any difference he wouldn't change my medication and he sees me now every 18 months.
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