Hi all new here to this forum I have read some of your stories and has made my SCI more clear which is made me feel grateful.
I had a bike accident in June resulting in my spinal injury which wasn’t picked up. I was unable to walk and use my arms and hands for roughly 3 weeks but was told by the hospital it was internal bruising and discharged me. I requested the GP for an MRI which confirmed I had a c5/c6 severe compression and had surgery metal cage to stabilise this in September.
I still have neck pain but bearable my main symptoms are the following
Hyper reflexia in left leg feels weak all the time and struggle to walk properly but able to walk
Complete numbness to right leg and unable to feel any hot/cold temperatures , tingling sensation pain when touch water or coldness to hands or feet
Severe pain from my 2 fingers , hands and arms on both sides currently taking morphine but doesn’t get rid of the pain
Seizning to hands and fingers within 5-10minutes makes it difficult to get to sleep
Keep having these random episodes where my feet feel they go ice cold blurred vision and feel unwell
Does anyone have these kind of symptoms ? Could it lead to MS ?
Does it get better over time or is this more than likely going to be a life long road
Thanks for reading any advice or similar stories would be grateful
Hi ash1991, Firstly welcome! I'm glad you found us.
My son has an SCI incomplete at T-11, he's never really experienced the same symptoms you're talking about here, though up to 3 years post injury he did suffer a lot of neuropathic pain, he still gets swollen feet which causes him some discomfort but never pain.
Personally I have never heard of MS and an SCI going hand in hand, but I suppose it could happen.
Thanks for your response its interesting how each individual is different the spasms and poor mobility I can handle it’s the severe pain to hands , fingers and arms i struggle with
I also have a C5/C6 spinal cord injury with similar symptoms. Left leg has hyper reflexes but also weakness, right leg has loss of heat/cold sensation as well as loss of pain in the normal sense. I’ve been diagnosed with Brown Sequard Syndrome which is a result of a injury to one side of your spinal cord. I was in a halo for 4 months and have had surgery to fuse C2-T1. My injury was 10 years ago and as expected the walking for me hasn’t gotten better but still can walk with a cane or short distances unassisted.
If I can help with any questions, please feel free to reach out
I had surgery in may i think it was c-3 to c-7 fusion but there was something else my neurologist was looking at because of atrophied muscles Ms or MD but i have not gone back to any doctors because i have been busy fighting with the banana republic healthcare system_ but it is possible from what i am told i could have other underlying things going on, i do walk but very cautiously like a chameleon swaying and balancing itself on a branch with my eyes on stalks like a lobster looking out for that darn cat or anything else i can trip over because once i am on the ground i cannot get up! I take care of my dressing and showering but you could watch a good movie in the time it takes me to perform the simplest tasks and picking up a gallon of milk or holding a cup of coffee is not easy forget can openers or ziplock bags_ after my surgery i was in tears because i was able to make a fist with both hands now i cant even close my hands! Sorry i'm ranting bad habit . i had and have basically the same symptoms as you except there was never any Pain! i never new this was brewing !
I had surgery in may i think it was c-3 to c-7 fusion but there was something else my neurologist was looking at because of atrophied muscles Ms or MD but i have not gone back to any doctors because i have been busy fighting with the banana republic healthcare system_ but it is possible from what i am told i could have other underlying things going on, i do walk but very cautiously like a chameleon swaying and balancing itself on a branch with my eyes on stalks like a lobster looking out for that darn cat or anything else i can trip over because once i am on the ground i cannot get up! I take care of my dressing and showering but you could watch a good movie in the time it takes me to perform the simplest tasks and picking up a gallon of milk or holding a cup of coffee is not easy forget can openers or ziplock bags_ after my surgery i was in tears because i was able to make a fist with both hands now i cant even close my hands! Sorry i'm ranting bad habit . i had and have basically the same symptoms as you except there was never any Pain! i never new this was brewing !
Don't worry abut ranting. It sounds like you're pretty new to the gimp club.
One thing that I think happens too often is that we're encouraged to focus on the positive and to be grateful for what we have left. While I think that that's all very well and good, I think it's equally important to just stop and acknowledge how much having an SCI an suck. Almost ten years since my injury I think I've made peace with the fact that I can absolutely hate everything about what my injury has done/cost me while simultaneously loving/respecting myself enough to make sure I have a good life. Contradictory? Yes. But, I contain multitudes. . . or something like that. . .
As for your physical struggles, it sounds like you might benefit from some PT/OT. You've got a higher injury than I do, so I'm not entirely sure what it'll be possible for you to do. However, I do know, that things get easier when you learn a few tricks. It's just a matter of practice. Since you're struggling getting funding, you might want to start looking for YouTube videos showing how different people with similar injuries negotiate the tasks you struggle with.
Standard caveat: feel free to ignore anything I said if it's not helpful!
had pt in oct.2022 _OT is not doable and now i have a new issue, or i should say i had it all along, but two doctors my primary care physician and several nurses looked at a dark spot i pointed out to them on separate occasions and said it was dry skin _ the spot is located on the inside of the leg between the knee and the ankle and considering i had cardiac stents put in the summer before and i also have peripheral artery disease i thought i might have been misdiagnosed again !!! so i wont be sporting these baby's anytime soon. dry skin? well i put moisturizer on it but started to notice the redness was spreading and it did bother me which i had told them!
earlier today i took a picture and sent it to a taxidermy colleague and a doctor in puerto Ricco he told me it is a vascular ulcer, he originally diagnosed me correctly in 2021 from puerto Ricco when i sent a picture from a friends phone of the same leg with a dozen or so little red blood spots just under the sock only on one leg within two minutes he called back and told me that was a stroke waiting to happen! that was in the spring, i walked 1/4 mile every other day on my break and had no idea what was coming!
Ash1991 I, am a C5-C7, surgery in 2008. Specifically for your finger problem, if you could arrange to get some botox injected into each of the affected fingers you would probably find relief for 3-6 months.
The episodes where feet feel they go ice cold blurred vision and feel unwell could be autonomic dysreflexia. Most medical people are unaware of this problem but there is a med you can use to alleviate it. Autonomic Dysreflexia can be dangerous to some people so read about it on th internet. If you have a blood pressure meter try to take a reading at the time. It can cause a spike in blood pressure but for me it causes a drop. There is usually something that triggers it so track your meds and behavior previous to episodes in case you can find the triggers. Let us know.
I step in the water, but the water has moved on...