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Is it normal for symptoms to keep changing?

Started by Kasey443 on 05/06/2010 8:50am

My MRI's showed moderate stenosis lumbar spine, and stenosis in my neck. My symptoms moved from my right leg, which had NO muscle strength from the knee on down, to my left which is now turned way out when I walk ( with a walker only ) as I cannot stand for 5 seconds without the right one getting too weak. What do they consider severe stenosis? I go to Mayo clinic on Monday to the neuro. I was seen there in ER before the MRI and told I have spinal cord compression.

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Sorry Kasey, but yes it is normal for symptoms to keep changing. Your muscles are pulling against each other and so are your nerves. It's really gonna change as you age...just like everything else does. Our spines compress more and more every year we age. Blame gravity or just body mechanics. Our spines carry our entire weight and will weaken as the years go on. Just look at grandma's pictures from when she was our age and compare them to today....she now has a big hump in her back and walks alot slower than yesterday. (sorry about comparison to all those grandmas out there).

Watch some of the videos on stenosis and body mechanics, it might help you to understand. (not saying you don't understand, but it gives you more of an insite). This site is packed with helpfull reading materials and videos and is a Godsend to us that need to dig deeper into our own spines.

Wendi

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Hi Wendi and thankyou for replying. I thought I would get a notice in my email when I got a reply, and did not. I will do as you suggested and go watch some of those videos so I can learn about what I have.

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This is a working diagnosis for me right now but from what I have read it sounds like it is a correct one. I thought I was crazy because the symptoms have changed over the last 3 months that I have been living with this pain & exhaustion. I am a 64 year old retired woman so do not fit the usual young male who gets diagnosed with this disease. I would like to keep in touch. I have just started chiorpractic treatment. It exhausts me even further even all he is doing is gently stretching my spine after electrical stimulation, heat, & ultrasound. Donna

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I saw my doctor today after he reviewed all my records & he says my hemoglobin is not binding with the oxygen I breath in & that also has a lot to do with my exhaustion. He will continue to work with me for the spondilosis but wants to refer me to an endrochrolist to see what or how that problem can be dealt with. I also have a hairline fracture in one of my ribs--no idea how I got it. Please other people talk about their experiences with this disease.

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Itcol20, I replied with a long message on here yesterday and it wouldn't work and disappeared. About you being tired, I am glad you are being referred to an endo., I was going to suggest having your thyroid checked, I have hypothyroidism, and it causes exaustion if not treated, but an endo will be able to narrow it down. Now, about my situation, I have not been here much because I was almost completely bed ridden for a month, had to use a wheelchair, then progressed to a walker, then a cane, and it was not because of stenosis. I had an episode of leg weakness come on so fast, within seconds, from my knees on down, that I had to hold onto counters and walls to walk. I ended up at Mayo clinic in Rochester, saw neuro and head of spine clinic, had tons of blood tests, MRI's of brain, neck, whole back and EMG of legs, and they could find no reason for what happened to me! I do have severe stenosis in my neck, and moderate in my low back, and go to PT for this, but am still searching for an answer. After this weakness came on, I went on to get dead tired, sleep a ton every day, 12 hours at a time, then a nap during the day, and terribly thirsty, and urinated way more often. The doc here is still checking me for things Mayo did not. I am at a loss and now dealing with this instead. I very very slowly started getting better, but it took forever, and I still have some problems, one leg weaker and knee gives out, oh, and what feels like vibrations inside my body at times when laying down, like a motor running on low was going on also. I knew they were checking for MS, yet I do not have all the normal first symptoms I guess. Well I was doing pretty well, then the tiredness has started again, and the vibrations, and the thirst. So I am going to PT for the leg weakness, which isn't really doing much as my legs started getting better when they felt like it, but it does help my neck. I also noticed from my injections, that my low back was swollen terribly afterwards, then as you know the symptoms changed nonstop. 12 days later is when this episode hit me. I had had 2 good days, then this. I found out these injections peak at around 14 days, and am wondering if they didn't cause the problem. As the swelling in my low back went down, ( it was so bad i couldnt lay on my back ) my legs got better and more strength) . Anyway, they did check for any problem with when I had the injections and could find none. I just know I will never have any more, and wonder if the double dose didn''t traumatize something in there. I do have problems neck on down, but this devastated me, and I want to find the cause so I can avoid this happening again or be treated properly for it.

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Thank you for your response. My thyroid has been checked and is OK. Found out oxygen is not binding with my hemoglobin and that definitely adds to or even causes the exhaustion. I hope my referral is soon.

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Itcol20, I am glad you got an answer to your exaustion, because now it can be treated. About your stenosis, do your chiro treatments help you? How long have you had this and what are your symptoms?

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I just started with a variety of symptoms involving my legs & my spine hurting in March of this year. I have deteriorated very quickly, which I read is typical for women. It comes on quickly & causes deterioration quickly for women while men come on more slowly & deteriorate slower. The chiropractic treatments are just starting with trying to stretch my spine $ loosen my rib cage. I've only had 3 treatments so no real results yet except for the fractured rib--hairline fracture.

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Were you diagnosed by an ortho or neuro? If it is severe and limits you immensely, I heard and read that the surgery for this has good outcomes. Only after other treatments of course.

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I was diagnosed by an excellent chiropractor. None of the other doctors I saw took me seriously. They didn't say that out loud but would ask me my age again and then refer me to someone else or order more tests that concentrate on my legs and then say other tests I had done when I went to the ER are wrong (like my lung volume being decreased) or that I had a stenosis in L5S1caused by fatty deposit. My chriiopractor is the only one who has sat down with me & listened to my whole story while actually paying attention & then took all the test results and studied them overnoc, gave me the one dx and said I needed a referral because there was a pattern of something g else going on. That's where I am.

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I'm glad your chiro. listened very well to you. I know how it is to go from one doc to the next, some look at you like you are nuts, some put it down to stress, some to your age. We know our own bodies and when something is wrong.

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Amen to that! Did your symptoms come on suddenly also?

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has your doc said anything about folic acid,,,they put me on it for another reason and it seemed to help my exaustion and breathlessnesss it took about a month,,i didnt realize it was helping until i went off of it for a couple of weeks then went back on,,,

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Itcol 20, yes mine came on suddenly. About 10 years ago, I had been working at my job 6 years, herniated a disk lumbar area, no accident, just wear and tear. I spent 6 months in physical therapy, chiro., and getting injections. Had surgery, but doc told me at that time I had stenosis also, cos I couldnt stand long at all. Tried going back to work, can now only stand about half hour or so or I get alot of pain and pressure. will be back here soon, company!

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I get an EMG tomorrow morning then go to my chiropractor in the afternoon. Have some questions. Joined ASS, I think that's the initials. Talk tomorrow.

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The organization is SAA.

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Hi, let me know what you find out. I won't be on here much, tragedy in the family. Good luck with your treatments. I will check out that organization.

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I'm sorry about whatever happen in your family. I will miss talking with you so hope you do come back when you can. I had a circulation test & it was normal. The EMG showed some nerve irritation. I also had bld work done looking for the genetic marker that usually occurs with this plus a couple more looking for inflammation. I sure would like to get the results tomorrow but I don't know. My legs are not feeling as heavy & he said my spine & ribs were moving better today. Still lots of spine pain, difficulty breathing but I do think I am a little better. Next Wednesday I will have a cortisone injection into my lower spine. Mainly diagnostic to see if it relieves my pain in that area & if my legs quit hurting. I'll keep writing you so I don't forget to tell you something. I'll keep you & your family in my prayers. God be with you & help you do what needs to be done. Donna

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Itcol20, thankyou so much for your prayers. I do have to go out of state on Friday to my neices funeral. Terrible one car accident, she was only 22.
About your injection. Please read up on these or ask your doc if you have not had them before. They must be done under floroscope, or x-ray. I have had a few epidural steroid injections in lower back for my leg cramps and weakness, also some in sacroliac area for arthritis. I read up on them ahead of time and also told my doc I wouldn't have any unless I was sedated and numbed. If either of these are what you are having, I would suggest sedation and numbing. Just a suggestion, some people just get numbed. Some docs do not do either, and my poor sis was in agony not knowing any better. The injections worked well for me the first time. The 2nd time not quite as well but still worked. The last 2 ( at one time for the first time ) didn't work. I found out it is common for the first one to work very well. So hopefully you will get some pain relief. Please let me know how it goes. I may be able to come back sometime next week. I will be on here till Friday.

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Kasey,

Sorry to hear about your niece, always difficult when they go soo young!

ltcol...about your epidural. There is a discussion board on epidurals that may just scare you, but it puts the procedure into perspective for you. It's not the most painful thing that you will endure, but it's not the most pleasant either. I never have been sedated for mine and it is kinda neat because afterwards you can see the last floroscope image the doctor took. It isn't neat when you are laying there wondering what the hell someone is doing to your back, but just relax and breathe. The first injection will be to numb you up, and that usually hurts the most, but it is quick. The second will be to get the epidural catheter placed and you won't feel that. The third is where they inject the anethesia and cortisone, and that will make your legs feel like they are cramping all the way down to your toes, especially if they mess with the L4 to S1 area, but that only lasts for less than a minute while they are injecting. And after cleaning you up, you get a band-aid put on your back. I always have a hard time getting up afterwards and my head always feels like it's all stopped up, but that goes away in a few minutes. It will take a few days for the steroids to "settle" and the anesthesia will wear off in about a day....so you may have relief for a day because they pretty much numb it up for the steriods to settle. I can remember all this only because I just had one done on Friday, otherwise I wouldn't remember much. I don't know if your pain center is gonna sedate you or not, to me it's not worth it because it's over within 10 minutes. Since I've been doing this for years, it's not a big deal anymore. I think the hardest part is the waiting. Don't let anyone scare you away from going this route, it may just help you and give you some relief for a few months at a time. I went for a whole three months last summer and didn't realize I had no pain until after about a month! LOL!
I've been told by a surgeon that he can't do anything for me, so I'm living on epidurals and meds for pain relief. Only one problem with that is a certain nurse that has told the doctor that I was faking my pain years ago....she's still around and I got to experience her on Friday! My hubby told me last night that he will go with me to my next appt and will tell the doctor that in no way, shape, or form will this nurse tend to me again. I thought it was kinda sweet, but then thought gee wiz, he's actually gonna take part in whats been going on? I was in shock for a while. I may be married with three teen-age kids, but I'm still battling all my pain alone and probably will do so the rest of my life. My hubby thinks he's doing his job when he has to drop me off and pick me up from my pain appts. He does get angry when he asks "what's wrong" and I tell him the truth "I'm in pain" and he knows there's nothing he can do about it. It's the helpless hubby feeling, I'm sure of it, but there is nothing he can do about my pain. Just like the rest of our spouses..they want to take away the pain, but can't. Sorry for rambling, but blame the meds...haha!

Take care of yourselves and God bless each and every one of you!

Wendi

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Wendi--thank you so much for the very clear & very descriptive picture of what I should expect. I must admit I was thinking about cancaling it. I cancelled the first one I had scheduled. My partner is very supportive but I'm not sure it isn't getting old to her. I can understand though because I really have been housebound except for doctor's appts. We did finally go to a friend's home for a visit & dinner but after about 3 hrs I had to leave & then I really paid for it the next day. So, you have these shots every 3 months? Thanks for joining the conversation.

Kasey--I am keeping you and your family in my prayers. Donna

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Donna,

Right now I'm having epidurals every 4 weeks, but when I started it was every 3 months with a nerve block thrown in for good measure. I love nerve root blocks, but only when one specific doctor does them.....he left and went on to bigger and better places like soo many of our pain mgmt docs do! My closest Pain Center is in the whole big city of Ft. Dodge, IA that has a population of 25 thousand people! Our hospital uses and abuses the anesthesiologists by keeping them on-call 24/7 and not giving them a break, so all but one packed up and left! We had a whole orthopeadic dept leave and if we break a bone around here, we have to drive 90 miles to have it fixed!

I can understand how your partner is getting frustrated, my hubby gets that way too. They feel helpless and useless when it comes to our pain. I tell mine thank you all the time and every once in a while I make a special supper for him....hurts like hell the next day, but it's well worth it.

Best of luck with your epidural and let us know how it went!

Wendi

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Wendy and Donna, thankyou so much. I have been having computer problems and not able to get back on here till now. I have to go now but wish you all the best till I get back. Good luck with your injections and pain relief to both of you.

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God be with you and your family Kasey. Donna

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Wendy--the organization is SAA--Sponsilitis Association of America. I got my new member packet today & it has a video that shows the exercises we need to be doing to keep joints as loose as possible & to strengthen muscles to keep our back straight. They are very simple but do initially feel pretty uncomfortable but it felt good afterwards. I had to quit part way through, too tiring. I am going to try to do them most days. I hope Kasey is doing OK--or as well as can be expected. Night. Donna

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Wonderful news--I do NOT have AS. I do not carry the genetic marker nor do I have the spinal changes that indicate such. I do have stenosis of L5S1 and had my steroid shots today. Since both legs were involved the doc did bilateral. He numbed the areas but I was awake. It really wasn't very uncomfortable at all and what was was very brief. My legs are not hurting me but they are weak from so little activity for almost 2 years. I will start very slow--5minutes max then increase 10 percent weekly. I ask the doc if the rest of my back pain was arthritis and he said oh most definitely because you have it so severe plus degenerative disc disease. I think my dx is better but it still isn't good.

Kasey--I still am keeping you in my thoughts and prayers.

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Thankyou for the well wishes. I am glad you got some good news Itcol 20. I will not be back for awhile. Thankyou untill then to all of you

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Kasey ~ The symptoms you described in your first written reply above was WORD for WORD of what I'm living with right now, I'm totally blown away. I've already undergone an Anterior/Posterior Lumbar Fusion of L4 to S1 as well as a Cervical Fusion & Dissectomy (sp?) of C5, 6 & 7. However the symptoms we are sharing are the constant thirst (insatiable), need to urinate like crazy and extreme weakness. These symptoms are new to me. I was diagnosed with Hypothyroidism 23 yrs ago and so I'm use to the variant changes that brings on; never has it caused what I'm going through right now ~ I'm starting to think that I may be in a "late stage" of this disease as SO many things are starting to act up. I've also recently been hit with Tinnitus in my left ear; a constant, 24/7 extremely high pitch tone that's driving me insane.

Well I see that you haven't returned to this thread in 2 yrs, I'm shooting this out there in hopes that someone will notice and maybe we can help each other out??

Thanks All ~ looking forward to hearing from you :)

Tona

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