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My Mysterious Mystery Symptoms

LisaNeedsHelpLLisaNeedsHelp Posts: 28
edited 06/11/2012 - 8:54 AM in Chronic Pain
Opinions please! I don’t post very often but I do read pretty much every post. I used to be a lot more active here but lately, it hasn’t been emotionally possible. I know none of you can diagnose me, but in my humble opinion, I believe you all are (Gasp! Do I dare say?!?!?) Smarter than most doctors! :-D So here it goes…

I have spinal issues at 6 levels, the bottom of my thoracic and my entire lumbar. I’m 24 but have been dealing with this for 9 years, so this is nothing new. I’ve had some, apparently minor, loss of sensation in the saddle area and decreased sensation when going #1 but no glaringly obvious Cauda Equina. It’s always been blamed on chronic nerve irritation. I’ve had the standard back pain and nerve pain, to put it lightly.

Then, about 3 months ago, I started with a new symptom. It was swelling and redness in my ankle, instep of my foot, and bottom half of my calf. All of this was RIGHT-SIDED ONLY and I didn’t have swelling in my toes. My MD was worried about a blood clot, so he sent me to the ER, and then wasn’t satisfied with the first ER so he sent me 2 days later to another one. Both ER’s, no blood clot. They all said something is wrong but they don’t know what.

I followed up with my PMD, and since I’ve recently had to see his, um, how do I put this… Less-than-capable PA, all that “professional” did was look at it and say it was swollen. Gee, like I didn’t know. It wasn’t made to seem urgent to any degree, so I let it go.

Throughout the past 3 months, it’s gradually moved to both legs, and is now swollen in both sets of toes, both insteps and the outsides of my feet, my entire ankles, my calves, knees, and quads. I finally saw my PMD in person, after many moons, and he ordered an EMG due on July 20th. I’m absolutely terrified of this test because I’ve had it twice quite a few years ago, and it is ridiculously torturous! But… I know it’s necessary to start to get to the bottom of this.

It was also brought up before this new stuff started that I need to see a rheumatologist to determine if there is an underlying auto-immune or connective tissue disorder causing all my problems. I have ligament laxity, which I’ve always been hyper-flexible, and more-than-normal degeneration in every joint in my body. I also had a failed knee surgery at age 15. Yeah, GYMNASTICS IS THE DEVIL!!!!!!! So far, none of the diseases seem to fit my complete set of symptoms from my research, but that’s for another day.

Ok, so that was the long-winded way of getting to my question. Have any of you experienced this progressive swelling? Or have any ideas that I could bring up to my doctor?

If you’ve made it this far, you have my sincerest gratitude! I appreciate all of you! And even though I’m not emotionally capable of responding as of late, I still hear all of your words and send all of the positive energy I can muster to all in need! Thank you so much for your support and intelligence!




  • Hi Lisa!

    I feel bad......you're such a young lady and have been through all this. I have been through a ringer myself, but not since my teens. I have not experienced this swelling that you are, and I have trouble in at least 6 levels, but split between C3 and T1, and L4 to S1.

    I would go through with the EMG, and see what the results are. I would highly recommend seeing a good rheumatologist and get that ball rolling. And lastly, I would begone with what appears to be a quack PMD. I would also consult with a neurosurgeon or orthopaedic surgeon, if you haven't already.

    Please, please keep us posted. Really, interacting is good and therapeutic. I interact on here a lot because I need the support, and I try to offer insight to try to help others on here. I get depressed, but I try to soldier on.

    Good luck.....stick up for yourself! :-)
  • Oh, and I forgot to mention that I’ve had the same nerve pain for the last 5 years, hadn’t changed since then. When this started I lost the nerve pain feelings in my lower legs/feet. Imagine going into the ER and telling them you’ve been sent there by your PMD because you’re NOT in pain! Hahahaha, I loved those crazy looks! Now, they are almost unable to feel, just plain no feeling most of the time yet so hyper-sensitive to outside stimuli, such as getting a pedicure. Also, I am not on any medication that would make me swell and haven’t started any new drugs. The legs and knees are also red most of the time. Thank you!
  • Ok, I promise this is the last one, I had drastically increased lumbar pain/lower back pain when this all started. Phew, I think that's all of it now! :-)
  • You have no idea how loudly your words spoke to me! I used to be very active on this and another site, but since getting worse, I have fallen into a rut that I've NEVER been in before. I completely agree with you that I need to become involved again. As for the young part, don't feel bad, I'm really 93 on the inside, I just hide it well on the outside, hehehe hahaha!!!!!!!! <:P I think I'll make it a goal to reach out more. Helping people is my ultimate purpose, so hopefully once I help myself, I can get back to doing what I do best! As for the PMD, he's actually a genius... It's just his PA that is a knuckle-head. He was the first to recognize what I knew for a long time, that I shared a gene with my biological father that makes pain medications largely ineffective, so he actually gave me doses according to my genetic make-up, and didn't base it on my 115lb 5'1" frame. So really, he's incredible, I just wish I got to see him more often, but that's the way it is for now. I suppose it leaves something to hope for in the future, haha! Thank you so much for taking the time to respond!!!!!!!!! >:D<
  • You're very welcome, Lisa. I know it's easy to fall into that rut, and I have been there, believe me--13 years of spine problems will do that, and I'm only 40. I mis-read your original post, and now I notice that you said PA. Maybe you can avoid seeing him somehow?

    Definitely reach out more, it helps! ;-)

  • Ok, ok, I’m sorry!!!!!!!!!!!!!!!!!!! I have one more symptom… I have always had nice skin, no rough edges, and I was getting pedicures regularly, but now my feet, especially my heels look as nasty, dry, and scaly a construction worker’s feet. I even suffered through a whole pedicure only to wake up the next day with the same issue.
  • If it all started with lower back issue as you say its posible its nerve issue in the lower back as you probably already know. Seeing a good neuro with the results of your emg test results might be a good idea and see if he needs to look further with mri or posibly mylogram. Its hard to say without knowing the test results.

    Sometimes it takes them some time to figure it out and hopefuly they can help. Good luck and keep posting on whats going on with ya. Good luck
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • I agree with Alex and it has been said so many times here before it is a complex issue to figure out. You could possibly have more than on issue going on and your trying to make the symptoms fit that of lower back issues. Have you had a doplar study of your legs? The MRI that revealed you had issues at so many levels what did it state in the diagnoses field?

    The one thing is for sure whenever the doctors say try this or do this or that you have to try it or see the doctor they are asking of you. Sometimes it is to rule out other issues and make sure they are not missing anything. For example I came up with bladder retention rather seriously last year. I have well documented spinal issues, so the easy guess would be to say it is spine related, but my doctors had me get a entire urological work up to be sure something else wasn't the issue. Speaking of bladder issues, have you had a complete urological work up? If so what test did they perform and what were the results? Do they have you on any medications to control it. I take a specific drug designed for bladder retention.

    AS far as the emg study if your that numb it shouldn't really be any issues to you. I have had numerous emg studies and due to the numbness it is actually a walk in the park for me.

    Let us know once you get the results of your emg study and what the diagnoses is. Also I concur you might want to find a good spine doctor such a nuerologist who is versed at getting to all the issues your having.
  • Definitely don't give up on getting the docs to work this all out for you. That's nice that you don't suffer anymore from the nerve pain, but don't let it keep you from pursuing an answer or diagnosis. Who will you be seeing for the results of the EMG?

    As for the skin changes. There's so many reasons that can happen, it could just as easily be totally unrelated. If you aren't already, I would recommend keeping a daily journal of everything and how you feel and what symptoms you have. You may be able to come up with a completely different picture of what is going on and how it has all progressed.

    Best wishes,

  • So sorry to hear you are having all these new issues. They do sound vaguely familiar. I do have swelling in my ankles and feet that started out with only one side, now it’s both. My ankles get red, but it is the pressure from the swelling. I also get the same in my knuckles and elbow joints. I can feel the swelling. It is from rheumatoid arthritis.
    I once could feel my toes and feet too. First the toes on one foot became numb, then the other. I can’t feel the bottoms of my feet right behind my toes and often go barefoot so I have to check them regularly. I have had many thorns in them and not noticed until they were swollen and infected and I could tell the puffiness when I stepped on my feet. My doc thinks this numbness is because of spinal fusion and arthritis pushing on nerves, etc., and will continue to climb upward. I am kind of guessing you might have something similar. I can tell you that any change in the weather makes it all worse. The nerve pain, joints, muscular, everything and we’ve been having some doozer weather in Utah this year. Don’t know if that helps you at all, but it kind of sounds like the rheumatoid symptoms. My doc gave me a liquid Nsaid called Pennsaid that I rub on my ankles, knuckles and finger joints. Takes about 20 minutes but you can tell a difference.
    Hope you get it figured out – tis’ a crappy trail we are on sometimes.. take care - Marion
  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    I have a number of similar symptoms on/in my left lower leg and foot. I have been diagnosed with an L 5 nerve root irratation due to a number of herniated L2 - L5 disc's.

    In my case my PM doctor (who also is a neurologist)
    says that it is an issue with my Peroneal Nerve which come directly off of the L5 nerve.

    You may want to google or bing Peroneal Nerve and see if any of what they talk about is applicable to what you are feeling (or not feeling) as the case maybe.

    Either way .... Welcome to Spine Health!


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