November 21, 2020 at 10:24 am #20376CathyParticipant
Have been diagnosed with “possible” MS. Have some brain lesions, but neuro won’t say it’s MS lesions, but won’t say it isn’t. Lumbar puncture was inconclusive. Spine MRI’s last done in 2017 and no lesions found. I had Lyme in 2005 and still test positive for it with 5 bands being positive. My symptoms have progressed over the last 9 years. I was diagnosed with Lupus in 2000, but now they tell me it may be MS instead.
I’ve had numb feet since 2011, foot drop in left foot. My hands are numb and tingle almost on a daily basis. I drop things all the time. I absolutely cannot get hot without feeling like my life has just been sucked out by an unknown and invisible alien. I will shake and become weak to the point of not being able to walk. Uncontrollable hands and legs jerking spastically. It takes hours to days to get over an incidence of getting hot. Using my arm muscles affects my leg muscles. My left leg gets a weird feeling like it’s going to cramp, but doesn’t quite get there and I will go insane if I don’t stretch it, just for it to come back 5 minutes later. The latter happens mostly when lying down. Sometimes I feel like something is squeezing my rib cage as if trying to prevent me from breathing. It really is uncomfortable. Muscle spasms in my upper back and the sudden jolts of lightening strikes makes me want to scream. The fatigue is a daily reminder of my body saying enough is enough. Most days I feel useless.
Four and a half years ago, I suddenly pooped myself with a horrible pain in my rectum. Nothing told me I needed to go to the bathroom. This has been ongoing and the pain is relentless. I am now fecal and urinary incontinent with UTI’S at least every 2-3 months.
The latest saga started in September when I suddenly had severe itching in my right arm, above elbow. No insect bite, no rash, just redness, swelling and an itch that I couldn’t even feel my nails when I scratched it. I was given an injection of solu medrol with an RX of Doxyclomine and prednisone. Took 2 weeks to finally subside. Have had this occur 3 more times. Once, I awoke in middle of the night with both arms itching from shoulders to fingertips. It was almost a stinging itch, as it sort of felt like a burn at same time. I also had chills with it this time. Took some Benadryl and hours later fell back asleep. When I woke up again, my right hand had swelled like a blown up glove. Again, no sign of insect bite. Happened again last week, with right forearm and ring finger on left hand. An itch that seriously can’t be scratched. Was put on prednisone and Atarax this time. Atarax did not help at all and prednisone finally kicked in. Still having that itch!
My cognitive issues have become hilarious to those that may be around me, as I mix up words all the time. Sometimes, I can describe what something does or what it means, but the name or word will not come. Writing has become chicken scratch and as I get tired, typing on a keyboard is impossible. I mix up words such as “know” and “no”, “there and their”, and the like. I don’t even realize I do it until I read over what I have written. It makes me angry because I am very good with english, spelling and grammar. If you see that here, just know I am not Illiterate!
This week, it’s been pain in my left eye and then a sudden feeling of a needle being poked through the eyeball. Don’t know if this is neuritis or not. Now, it’s cold here and I am not doing well with that either. Does it ever just stop? I really need a break!
December 3, 2020 at 9:15 am #20405Ed TobiasKeymaster
I’m sorry to take so long to respond to what you’ve written. I’m also sorry that you’ve been going through so much.
MS affects us all differently and, though I have a lot of difficulty walking and need to use a scooter I haven’t experienced most of what you describe.
I hope that you get a firm diagnosis and the break that you’re looking for.
December 14, 2020 at 3:31 pm #20450Lisa GarriottParticipant
Hi Cathy –
I just received an official diagnosis after 6 + years. When my neurologist first suggested MS 6 years ago, I called a good friend who had been diagnosed several years prior to me. Her ONLY recommendation was to find a neurologist who specializes in MS. Maybe you’ve already done this, but I thought I’d suggest it. It’s made a HUGE difference for me.
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