Could this be autoimmune? Losing control of my legs..

[CrestedGecko]

In the past few days I have been losing control of my legs and at the same time they are extremely sore, which makes it hard to stand or walk.  I started having trouble one year ago, and I have had many symptoms that the doctors can't seem to put together.  I came on here as a last resort because I'm afraid if I don't try everything I can I'll lose control of my legs completely.  Here's my story:

About a year ago I started having abdominal pain. I felt nauseated and fatigued almost all the time. The doctor couldn't find anything wrong with me. A month later I began having severe pelvic pain. Urine tests and pelvic ultrasound came up negative. It continued to get worse until it spread to my left leg a month after that. I went to the hospital and was misdiagnosed with sciatica. MRIs and X-rays of my back came up normal. Treatment failed. I saw an orthopedic doctor, who examined me and told me nothing is wrong with me orthopedically. He refered me to a gynocologist, who diagnosed me with interstitial cystitis/peripheral neuropathy. Rescue rinses made my symptoms worse, so he started nerve blocks. I've had two, and they have helped my pelvic pain but not my leg pain.

Over the past few days I have developed some new symptoms. For 5 days I have been sore in my neck, arms, and legs. My legs are the worst of it. When I try to walk my legs give out on me (mostly my left one). My stomach has also gotten much worse the past few days - after I eat sometimes I get extremely nauseated and dizzy and even have troubles breathing.

I've always had Raynaud's and I've always had trouble healing.  I have scars that came from mosquito bites and occasionally I find bruises on my body that I can't remember getting.  I was tested for lupus a couple years back, and it came up negative.  Around the same time I was checked for thyroid problems, also negative.  It is possible that my thyroid is having problems by now, since it runs in my family, but I still don't think that would explain my legs!  Autoimmune disorders also run in my family so I am convinced that might be what is going on.  I am only 21 and I am falling apart.  I use a cane, sometimes crutches, and sometimes my arms and legs are too weak to use either so I am stuck on the couch.

I feel like I am dying - please help me!!!

[CrestedGecko]

Is that why people with lupus are sensitive to heat?

It's strange, and perhaps unrelated, but I always loved warm weather and now whenever I get out in the sun it feels like I am burning up.  And the heat makes the veins in my hands much more noticable, like a spider web o.o

[mum2four]

Opps I forgot to also say that I suspect arthritis as well in my hip waiting to go back to the Dr hopefully tomorrow as I'm to busy today to go. If it arthritis I'm not even sure is anything can be done to help me and if its not I have no idea what either about what it could be or what can be done I hate the idea of being on pain med for life.

[mum2four]

The only one of the test I recognise is C-reactive protine I remember that one being on blood work paper but not other's I will look in the others

[karajo]

The cracklin sounds in your joints is arthritis.  Now whether this is related to osteo, rheumatoid or lupus, I couldn't be the judge.  

Autoimmune panel would consist of ANA, sed rate, antidsDNA, maybe an ENA, anit Sm, C-reactive protein, WBC.  I would encourage anyone who thinks they may have lupus to spend time in the sun prior to their ANA test.  If you have lupus, it will cause the ANA to spike. If you don't, it won't affect it.  

Others might have more to add to this.

[mum2four]

I have asked about my lower back and nerve's. My back clicks when I walk and the more it clicks the more trouble I seem to have walking. I went to Dr and asked her she said she does think it's got anything to with my nerve's or my back. I went to the physio and he said the same thing. The physio did note that my arches(feat) have calaps and I should be wearing supports for them. I have not been able to afford them yet to see if things change but I really dont think that my archs are the cause my back has been cracking since I was kid if I tryed to do sit up or lifted my left leg while lay flat and when i put my leg down again it would crack big time. It was only recently that the cracking and now more of crunching has started to happen when I walk and when it happens it can also come with a lot of pain when I try to life my leg. Even more pain if my hip is playing up as well. My hip can feel like it's about to dislocate. I recently finally convinced my Dr that the pain in my hip was unbareable I need an answer. I mentioned that my mum was diagnoised with arthritis young and my sis was to recently. My sis is only 1 y older than me. My nana  also had arthritis.

I had a xray on my hip the other day I have to go back for the result this week.

What does an auto immune panel consist of. What do they look for.

thank you

[abryson]

Hi hun,
     I am sorry to hear all of this is happening to you. I too am dealing with an undiagnosed multi list.. lol  I read your post and wanted to give you some insight. ( maybe). I am 30 now and started having some med issues about your age. Mainly my lower abdomen and my back. I blew off the stomach stuff when I was riding my horses and felt my back twinge. For about 2 weeks I couldnt move at all.. I pushed it out of my head and bought some new boots and so on.. Anyway to make a long story short. It turned out when I was 25 I wasnt hardly able to move or walk or do anything a 25 should be able to do. My female pain got worse and I started having bad menstrual cycles enough to put me in the er once. Turns out I had a severe herniated disc in my sciatic. (S1) and my leg pain was caused from that. I even started having drop foot syndrome. ( When the floor jumps up on you. lol its when I cant pick my foot up all the way and I stumble) I started getting the nerve root block injections and they did help a little but not completely. It gave enough relief though from what I was feeling before that I didnt care about the other remaining pain. When I went back for the second injection there was a lady there that had had a root block done for her stomach and lower back pain that started having a lot of sciatica pain and even more pain in her bcak after her injection. She started loosing control of her legs and even her bowel habits. Her stomach pain was worse and she even was having some brain fog symptoms. Turns out that the dr that did her injection messed up somehow and got the shot in her spine and she had some very bad reaction to it and she let her reaction symptoms go too long before telling her dr that some of the stuff that happened due to the shot was perm. If you are having worse pain and loosing coordination it may have been from a reaction to the cortisone or a dr mishap. Also if you are having a disc or spinal issue I do know that any nerve damage or nerve constriction in your lower back can cause lower abdominal problems like diarrhea or constipation. and cramping that feels like pms cramps and can cause your cycles to be even more painful.I started having pain when I ovulated due to the nerve damage. Well at the time it was just the disc pushing on the nerve but it is perm now. But if you are worried abput an Auto Immune have you Dr run an Auto Immune Panel blood test on you. I have had so much back and nerve pain for years and all of the sudden I started having upper back and neck pain and joint pain in my hands. I started dropping stuff and my hands were hurting so bad I couldnt pick up my drink. My joints were swelling and they hurt to tough them. A long with several other things that i didnt think were of any importance actually were and my Dr did that Auto Immune panel and it came back pos for an HLA-B27 antigen that is found with Lupus and Rheumatiod Arthritis and AS and a bunch more. Most of the ones in the list of possible suspects are all bone and joint attackers. A few even start with your digestive system so have them run that panel and see what comes up. From what I have read and found out. There are so many things that could be a factor so maybe that would be a place to start. I know its a waiting game but you are young and if they find it early that may help you..

Hope this helped,
Good luck and trust in God. He has the power to heal.
Your fellow friend in the game of, "Whats My Diagnosis?"

[want2bik1]

These autoimmune dieseases we are seeing are caused by the various toxins in our enviroment.  To name a few ; mercury in the amalgam filllings, mercury in the vaccinations, contamination in the water we drink, pesticides being sprayed on our food, fish contaminated with mercury, animals we eat given growth hormones and antibiotics, hydrogneated oils, HFCS, and all sorts of chemicals put in our processed foods to help preserve them.  Our bodies can repair themselves if given the vitamins and minerals they need.  I have found this to be true with myself.  Eating a diet consisting mainly of raw fruits and vegetables has made me very healthy.  I eat a little salmon, cod, chicken breast and turkey breast but try and stay with the healthy animal produsts.  I use to have sympthoms of MS.  Dizzyiness, tingling and dead feeling in hands and feet, double vision, nausea, insomnia, muscle spasms in my back, and broncitis once a year.  I was going to the emergency room every 3 mos.  I got on a detoxification program and started eating a healthy diet and all those sympthoms are gone.  Check out your enviroment and try and remove the things which may be toxic and get on a good diet program and you may see a difference.  Only the body can heal itself.  Let your food be your medicine and your medicine be your food.  

[mum2four]

I've been having simular strange symptoms. For about the same amount of time.

Intence leg pain and fatuige. I trip over uneven surface's and knees would give out I was rolling my anckles a lot as well. Standing was becoming imposable.

I got my self a HR monitor at xmas as I was trying to use the gym and loose weight and I was also trying to rule out heart involvment causeing my symptom. well I was wrong I ruled heart involvment in not out.

I discovered I that my heart rate was getting up as high as 185 walking slowly. It took 6mth but I was finally diagnoised with Inappropriate Sinus tachycardia.

I dont know if you have looked in to heart involvement yet, but it would be good to rule it out.

I dont know 100% if my IST is the cause of my leg issues but my legs have gotten better since starting Ivabradine for my tachycardia.

I was also struggling to get a full good nights sleep and my Dr's first theroy was not getting into rem sleep. with out REM sleep ones body cant repair and recover it self. that might be another angle to look in to.

another theroy might be to look into parkinson's. I think that was a last resort but in researching reasons for leg trouble I did come across a very discription that made me feel like it was discribing what was happening to me in the parkinson's symptoms. I still slightl worried that it may be some thing I still have to keep an eye on but I'm hoping to find a better answer.

I felt like my leg's magneticly being sucked back to earth when I was finally able to lift them off the ground. It was like I have to walk with magnet's or like gravity was stronger than me. Its a horrable feeling. I still struggle to life my legs as far as I use to when I walk but I'm hoping that improves the longer I take my heart med's.

I hope you find a reason for your leg trouble keep in touch I'd love to hear what you discover as well.