Since my neuro does not give nerve blocks, I finally broke down and went to a pain specialist. He proposed a series of 3 epidurals in my back to see if that would help this intolerable pain behind my left knee. It feels as if someone is putting an electronic cattle prod to the nerve in the back of my knee and setting it on fire. It has no warning, comes and goes as it pleases, and stays as long as it pleases. When it hits, the pain is so bad that I scream and fall like a ton of bricks. The doctor explained that I have bad spinal stenosis (a narrowing of the the spinal canal) especially down at the lumbar-sacral area. In fact, he said that it was so narrow at some points that he wasn't sure he could even get the needle. He felt that this would be a more permanent remedy, if it works, than nerve blocks, which basically work only 24-36 hours in my experience with them. I had my first injection on Thursday. They used light sedation (Versed) and I actually felt better. I put some ice at the injection site when I started to have some pain that night, and it went away. But my back felt better and best of all, the nerve pain behind my knee was gone and I could take the e-stim off. Today, 2 days later, the back of my knee is tingling a bit but it feels more like the same numbness pins and needles that I usually have. I have 2 more injections to go. Stay tuned.....
DESPERATE TIMES CALL FOR DESPERATE MEASURES - My MSAA Community
DESPERATE TIMES CALL FOR DESPERATE MEASURES
Sounds awful Sukie427
Hope these injections continue to ease the pain
Hi, Erash. It's Saturday night, so why are we on our computers? I know why I am--I'm old, it's getting to be past my bedtime, and my husband just ordered a pizza. But you're young and beautiful, so what's your excuse? The injections aren't as bad as they sound and the mild sedation does help. And hey, if they work, then who cares anyway--it's better than that awful pain!
Sukie427
We had a rowdy night out at Paneras (local healthy fast food restaurant) where we sit on the patio, eat salads and throe bread crumbs to the sparrows.
P.S. on a limited income so our fun is tempered, not that I could or would have wanted to do more 😊
I get it. We have here in town a Wildflower Bakery which is very similar to Panera Bread, and we are actually supposed to be getting a Panera Bread on this side of town. I am not sure why it is, but Sedona has two main roads and people who live on one side are always reluctant to come to the other side. When there is no traffic, it takes about 8 minutes. I used to commute on average 45 minutes, so this is nothing! Glad you had a wild night out. At least the sparrows were happy!
Good luck with the injections. I've had my share over the years. Some worked some didn't. Hope yours work for you.
Donnie
I had pain that started in my hip and went down to my knee. I had 3 injections in my spine. I still get the pain occasionally, but nothing like before. I got the most relief after the third injection. I have a friend who only did two injections and all her pain has returned. Good luck and keep us posted!!
Thanks Juleigh. That is very encouraging. At first I was angry that he wouldn't give me a nerve block when the pain behind the knee returned, but then he explained why. I got very confused (this has been happening a lot lately) and thought that he was doing the injections for some pain that I have experienced in my back from time to time from when I broke my L-1 vertebra last October in a horseback riding accident. Once he sat down and explained it to me, I then understood why he didn't want to just give me a nerve block and I felt better about these injections. I hope I get as good a result as you had. And I plan to stick to the all-3 plan!
Hi Sukie427 sure hope the epidural gives you lots of relief!!!👍 Having had arthritis and severe back problems for about 30 years, I can relate to your pain. Fortunately was able to get an awesome orthopedic doc that eventually fused my back and no more pain there. Best to you! Lynn
Thanks, Lynn! I am glad that your back surgery worked so well!
@calfeechick I know the feeling. I've had 2 fusions and ortho says I need another but I'm not giving in until it gets much worse. I have been blessed for many years with a detoriating disc disease. I've lost 4 so far and got 2 more gone. Then along came ms. But I am blessed.
Donnie
I'm proud your getting some relief.
My pain Dr never did any exray catscans MRI Nothing. His suggestions was injections. I received them for a good while until I asked my Neuro surgeon to check my back out. My vertebrates were pinching nerves a way injections no longer worked.
I wish you the best relief!
Thanks, SimHarris. I am sorry that you had that bad experience. It makes no sense to me that the dr. just gave you an optional remedy without checking for the cause. In addition to MRIs, my pain dr. saw that I had had nerve conduction studies with EMG (I thing that's right) and there had been no abnormality and therefore it was concluded that the nerve pain was due to the MS. In a way, I guess it is since the MS has taken hold of what normal aging does to one's spine and upped the throttle big time. We really need to know our bodies as best we can and be our own advocates. And although most of us have grown up with the idea that "doctors know best" it's not always true, and therefore we must learn to question without feeling guilty for doing so. A good professional will not be offended by questioning of a proposed treatment; in fact, they will welcome it. If any doctor does become offended at being questioned, it's time to find a new doctor. The best professional are those who recognize their limitations and who listen to their patients.
Sukie427 I hope that you continue to get relief from these injections. Please keep us updated.
Jessie
Sukie427 , being tenacious is so important in dealing with MS and the long list of doctors, isn't it? I sure hope you have found the medicines and procedures that help you most.
Thanks, greaterexp. I really like your name--greater expectations are something we all should have!
I'm sorry you've dealt with this excruciating pain for so long. Praying these injections help in the short and long term. And good for you for being so proactive! 💕
Thanks, Tutu
I hope you find relief from your pain. I have excruciating pain 24/7 so I really feel for you. You are in my prayers. Kelly
Amore55, it's Fancy1959. You were one of the people I was thinking of in my response two Sukie427. Have you checked into this type of pain management or your debilitating pain? If not what keeps you from stopping doing it now? Living free of pain would be worth just about anything to me. I'm praying that you have the strength to go and check into this if you haven't already. I'm sending you all my love and I'm sending you support and hope today your pain is manageable. Fancy
@Sulie427
I hope these injections are the answer. I am so sorry for all the pain you (and others) have experienced. Ugh. It's my worst fear. I'm not sure how everyone handles it and I'm afraid I've gotta brace myself because most MS'ers seem to experience it. You must not be able to walk at all when you experience this? Is surgery a possibility?
, you are correct, I cannot walk when the pain comes and someone has to help pick me up. It is embarrassing but you get through it. Sometimes it happens many times back to back and then my day is basically shot unless it comes down by itself later which sometimes does happen. You do not have to worry about something in the distant future which may not ever happen to you because if you do you will end up in a deep depression. The best thing is to anticipate that you will be great until and unless something does happen. There is no surgery for what I have and even if there were I would not do it because I've heard too many horror stories about people who have had back surgery for various things. Also, I am very paranoid about my brain and spinal cord. I refused to let my neurologist do the spinal tap he wanted to do as a final confirmation that I did have MS. As I said, look forward to each day with confidence and don't anticipate trouble that you may never have. Best of luck to you and I hope you stay pain free. PS. I live in a state where medical cannabis is legal and if the nerve pains do not come down I Medicaid with the cannabis which seems to help relax it even though temporarily. So all is not lost.
Sukie427, it's Fancy1959. I'll be sending a lot of prayers your way that the nerve blocks are the answer to your debilitating pain. I hope other people in the chat room are actively thinking about what you're doing because I know there are tons of people with severe pain in this chat room. You certainly have thought Outside the Box in of options that your neurologist didn't offer. To this I say hip hip hooray to you or fighting hard and not giving up. You are true MS Warrior to keep getting up and fighting on. Please keep us posted and once again hopefully everyone in this chat room experiencing debilitating pain will be paying attention to what you're doing and talking to the appropriate doctors about it. Until we speak again take care and God bless you.
Thank you, Amore55 and Fancy1959 , for your thoughts and prayers. You both are in mine as well. Amore55, I feel so bad that you are in so much pain. Have you thought of going to a pain mgt. doctor? And I am not talking about one who is going to throw opiates at you, I'm talking about one who understands pain and how it works and can do serious interventional stuff like these injections. To be honest, it's so ironic it's almost funny that I, who am so paranoid about anyone ever touching my brain or spinal cord, should end up with a disease like MS! The minute I found this pain specialist, I told him that for over 25 years I had suffered horribly with hemiplegic migraines and I'd been down that opiate road and I don't want someone who is just going to throw opiates at me. He said that his office doesn't even prescribe them. That showed he was the person I wanted. I wish both of you good luck and hope that you also can find some forward-thinking medical provider who has better things to offer to try and deal with your pain. Don't be afraid to ask questions and refuse any treatment you don't want, and to go through as many providers as you have to to find the right fit. You have the right to not be in pain--exercise it!
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