Sak Posted May 4, 2004 Report Share Posted May 4, 2004 The cause(s) of my OI have never been pinpointed. Today, I bumped my shin against a doorframe and was reminded of an injury I received at about age 14 or 15.It was in winter, and I slipped and fell and smashed by left shin against a large tree root. Ever since then, an area of my left shin just below the knee has been slightly indented to the touch; and sensation in that leg below the affected area has been diminished slightly. When I touch the area, I sometimes get a tingling-burning feeling. There's obviously some nerve damage there.But today, I was rubbing the injured area (after hitting it on a doorframe), and when I pulled out on the skin, my heartrate dropped after a few seconds; and it sped back up after I let go. I was shocked. The effect is repeatable. Does this make any sense to anyone? Could the probable nerve damage in my leg be related to my OI? Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted May 4, 2004 Report Share Posted May 4, 2004 You might want to check out this article:http://content.nejm.org/cgi/content/abstra...ournalcode=nejmMichelle Quote Link to comment Share on other sites More sharing options...
Sak Posted May 4, 2004 Author Report Share Posted May 4, 2004 Wild; thanks.I'll have to investigate this further. Quote Link to comment Share on other sites More sharing options...
pamyla Posted May 4, 2004 Report Share Posted May 4, 2004 I find this interesting as well. Over ten years ago I got hit by a car - I actually had a bumper imprint on my leg. Anyways, when I touch around my knee there are places that are tingly and numb. I never would have thought about a connection with pots.... Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted May 4, 2004 Report Share Posted May 4, 2004 Hi Pam!The tops of both my legs are quite numb. I can pinch them really hard and not really feel the pain...but when I pinch lower on my leg with the same amount of pressure I really feel it! I think something is wrong with my legs too. Maybe we can get on a leg transplant list? Okay, I'll stop being silly. Thanks again for putting together the newsletter. You always do such a great job...don't know what I'd do without you. Michelle Quote Link to comment Share on other sites More sharing options...
futurehope Posted May 4, 2004 Report Share Posted May 4, 2004 Michelle, Just curious. What newsletter (that Pam did)? Quote Link to comment Share on other sites More sharing options...
Jackie Posted May 5, 2004 Report Share Posted May 5, 2004 I'm curious about this too. I was hit in a head-on car accident in 2000 and took the force of the impact in my right leg (which by reflex had the brake pedal fully pushed down). It didn't break anything but the arch of my foot was swollen and bruised for weeks. My arch has never been the same. I wonder if this contributed to this for me too. All I know is that I get a lot of pain in my low back and leg aches far too often...it is like they ache right into the bone and this can happen with no exertion at all. Of course then there are the times that I do something more strenuous than usual and then my leg muscles ache for days. Does anybody have that? I guess I am just totally out of shape but it doesn't seem right for my leg muscles to be so sore just from bending down and carrying heavier than normal objects. Oh well....the saga continues! Thanks for bringing this issue up though because I too am curious about nerve damage in the legs. I know I have blue feet often in the morning and get a lot of blood pooling because my lower legs are blotchy and red quite often so I know something is going on with them unless that is just the normal symptomatology that goes along with POTS which it seems it does for some. Anyhoo...keep us posted if you find anything out! Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted May 5, 2004 Report Share Posted May 5, 2004 Pam designs our newsletter. She has done the last two issues. If you look at them you will see that she is very talented...if you look at the others, you will see that I am not so talented. Here's the Spring issue we just published:http://www.dinet.org/Spring2004/aprnews1.htmIf you are a DINET member, you should receive email notification when new issues are published. If you are not getting your notifications, be sure to check your junk mail...they may be there. Also, if your email address has changed and you have not notified us your email will bounce back to us as "undeliverable", so be sure to keep your email address current.Take care,Michelle Quote Link to comment Share on other sites More sharing options...
pamyla Posted May 5, 2004 Report Share Posted May 5, 2004 Michelle you are too kind Maybe you should post an announcement on the forum when the newsletter comes out? I don't think I've ever received a notification..... Do you know where your numbness comes from?Jackie - I also sometimes get achy knee. If I've done alot of exercise it can sometimes ache for weeks. And then the weather also affects it a bit, although more so in the first few years after the accident. I've been taking MSM and wasn't sure it was helping until I stopped taking it. About a month after I had a big increase in aches and pains, so I went back on it and they do seem to be better. Oh, and I definitely get those blue feet! When I was on crutches people kept commenting on how my foot was purple Quote Link to comment Share on other sites More sharing options...
Jackie Posted May 5, 2004 Report Share Posted May 5, 2004 Pamyla - what is MSM? Just curious. Thanks! Quote Link to comment Share on other sites More sharing options...
pamyla Posted May 5, 2004 Report Share Posted May 5, 2004 It's a vitamin supplement that I take - Methylsulfonylmethane (MSM) is a nutritional form of sulfur and supports connective tissue health such as hair, skin, nails, tendons, ligaments, bones etc. Some people cannot metabolize the sulfur well and cannot take it. The typical dose is 2 to 3 grams daily. MSM is one of the major building blocks of glycosaminoglycans. Glycosaminoglycans are key structural components in cartilage and play an important role in the maintenance of joint cartilage. My doctor first recommended it for weak adrenals but I know it's also recommended for arthritis sufferers. hth, Pam Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted May 5, 2004 Report Share Posted May 5, 2004 Hey Pam!You mean you've NEVER received an email notification??? Ugh! To think of all the time I take sending those stinking things out. I read somewhere that a large amount of wanted email actually gets filtered as junk mail. And I do send out mass mailing... Ah well, at least I try. I will take your advice and post something here. I'm not sure what causes the numbness. Maybe a compressed nerve? I do know that I've woken up in the middle of the night and hardly been able to feel the tops of my legs at all, which makes me think that certain positions make it worse. Who knows? Michelle Quote Link to comment Share on other sites More sharing options...
futurehope Posted May 6, 2004 Report Share Posted May 6, 2004 Michelle, I've never received a notification of a newsletter either. Maybe it has to do with registration. Obviously, I'm registered for this forum, but maybe there is a separate registration for newsletters? Is that what it is? When I checked the newsletter you just mentioned, and went snooping I noticed it asked all kinds of personal information including my address. So, the newletter registration is different than signing up for his forum? Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted May 6, 2004 Report Share Posted May 6, 2004 Yes, you actually have to be a member of DINET to receive email notification when a newsletter is published. Registering for this forum does not automatically make you a member, and changing your email address on this forum does not change your email address as a DINET member. We NEVER EVER give your personal information to anyone else. We don't ask for any more contact information then someone could get from opening a phone book...we don't even ask for your phone number. However, if you feel uncomfortable with sharing the information required to become a member you probably just shouldn't join. Our goal is to help, not to make anyone feel uncomfortable. Best wishes,Michelle Quote Link to comment Share on other sites More sharing options...
purplefocus Posted May 7, 2004 Report Share Posted May 7, 2004 I wake up every morning with both my lower legs aching so bad and it takes a few minutes before I can even stand up on them and after I start walking it seems to start feeling a little better. I still have pain in my lower legs all day. I am on neurotin and it does help. Does anyone else have this when waking up?I received the notification of the newsletter. Paige Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted May 8, 2004 Report Share Posted May 8, 2004 Hi Paige,I don't have the morning leg pain that you mentioned, but I am glad that you got the newsletter email. Thanks for letting me know....I'll keep sending them out and hopefully most (some?) of you guys will get them. Michelle Quote Link to comment Share on other sites More sharing options...
Jackie Posted May 8, 2004 Report Share Posted May 8, 2004 Thanks Pamyla for explanation of MSM. Paige - I get pretty bad leg aches but there is no rhyme, reason or pattern yet determined. (I do have osteoporosis though at 37). They will ache reallybad for 1 day or for days and then not at all for awhile (so I guess no not just upon awakening...they are either aching all day or not aching at all). Quote Link to comment Share on other sites More sharing options...
geneva Posted May 8, 2004 Report Share Posted May 8, 2004 This is a very interesting topic for me right now. For the past 2-3 weeks I have started having leg aches but just the back of my legs. At first it was the back of my knees-- both of them-- and then the achy feeling would sometimes go up or down the leg. My doctor had me come in last week checking for signs of bakers cyst which I had a year ago or blood clot. He could not see any specific signs so he said he wanted to wait on an ultrasound. It bothers me some because the pain is just on the back side of my legs, but he feels like the odds of my having a clot in BOTH legs at the same time is pretty remote.I just wish I knew for sure that this is one of those POTS symptoms and although very uncomfortable I wouldn't have to worry about the other possibilities. Last Thursday I had a massage and the entire time I was on the table and she worked on my legs I had NO aches/pain (I came in feeling horrible). When she was through and I stood again I had a mild ache return but not like before. Today however I stood to bake a cake and they are really hurting.Michelle, I ALWAYS get your email notices....thanks!! Quote Link to comment Share on other sites More sharing options...
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