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Lupus or ?
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Lupus or ?

I don't know where to ask this.  I have posted in MS forum recently and have not gotten any response.  Sorry in advance for the long post but I have been through so much and I am in so much pain but I can't seem to get any help.  It all started back in June when I fractured metatarsals in foot.  First a boot, then a cast for only two weeks and had alot of swelling and toes turning colors, so removed cast and I had a superficial blood clot.  Lovenox for 3 days was all.  I was back in a boot and started have pains and nerve burning sensations in BOTH legs.  I assumed it was from walking funny with the boot so let it go for awhile.  Finally, went to my GP (still in boot) and she had my leg xrayed and she sent me to a Ortho specialist because she though I may have some type of bone cancer.  Ortho said no bone cancer.  I still have this large lump right under and to the inside of knee.  But now I have this lump on both legs in the same place.  Very painful and gets very large.  I have been to Neurologist and Rheumatologist.  MRI showed "scattetered white matter lesions" but says they are not in the normal place for it to be MS.  All blook work normal.  Bone scan to check for RSD/CRPS but it only showed minor things.  Strange though, the Doctor said he had noticed a had a recent problem with my right foot (It was my left foot that I had fractured not my right).  Lyme test negative. Nerve testing all minor issues.  Please look at my below symptoms and see if you can give me any ideas.  I am progressively getting worse and its making my home and work life difficult to function. I am on my feet about 9 hours a day at work and I was very active before this.  I hate the pain and the not being able to do normal things.

All symptoms are bilateral
Thigh pain and weakness (Front of thighs only)
Sharp random stabbing pains in thighs
Swelling at the top of tibia on the insides
Nerve tingling and severe burning started in legs, spread to arms and neck.  This is pretty much 24/7.  I now randomly get the nerve pain all over
Legs very heavy and weak feeling at the same time if I walk to far of a distance.  Shopping is out
The pains start at thighs and go to feet but worse pain is the thighs.
Swelling of legs daily
Difficulty standing from a sitting position
Tops of thighs get very itchy at times
Legs are very tender to touch and get very warm in spots
Squatting down is very difficult and standing back up is almost impossible unless holding onto something.  Leg muscles feel very weak when trying to get up.
After walking for abit my feet don't lift up very well.  Meaning I seem to be dragging my feet along.  
Tripping alot
Arms not painful at all (except the nerve issue) but getting very weak
Hands not painful at all (except the nerve issue).  I use to cut my kids hair but its almost like my hands don't know how now.  I can use them just fine until it comes to to things like cutting hair or buttons.  They just wont work right.
Mouth/face gets very tight feeling.  I am always opening my mouth as far as I can to stretch it.  At times when eating when I start to take a bite my mouth does not open all the way.  No pain just tight feeling
Drop things randomly
When laying down for bed my whole body seems to tremble from the inside.  My husband cannot see it but I can feel it inside.
I get the feeling of contractions in legs throughout the day but alot when I am sitting still or laying down.
I will randomly have to stop what I am doing because it seems the room is spinning
Cannot concentrate on anything.  Forget everything.  I use to be able to have several thingsgoing on at one time now its difficult to concentrate on one (Manager of a clothing department so this is not working well for me at work)
Get VERY confused over smallest things

I am taking Neurontin 300mg 3-4 times a day.  Helps alittle but not a whole lot.  I was never one to take any pain meds but now cannot get through the day without them

I know this is very long but I feel so alone with all this.  I cannot get any answers.  Please help.

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4 Comments Post a Comment
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Avatar_f_tn
Forgot to mention livedo rash, very dark at times but have it continuously.
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434278_tn?1324709825
I don't know what to tell you.  Have they checked for lymes or fibromyalgia?
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Avatar_f_tn
Yes I have. And no to both. Your response is the same as my Dr. Thanks for reading my post.
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Avatar_m_tn
I went through a time several years ago that was very similar to your nerve symptoms, itching, weakness, brain fog, muscle spasms, etc, etc. I do have Lupus but at that time they did not know that and I was just a freaky hypochondriac, as you are probably feeling now. After many, many tests it turned out to be as simple as low B6. I took a supplement and WOW! What a difference! Dr said you can experiment with B vitimins because you excrete what your body doesn't need. So buy a quality brand and do an experiment, I say. Or if you feel better, have them test your B levels. B12 deficiency can do pretty much the same thing. D deficiency is common this time of year too. Don't assume your doctors tested your vitimin levels. It's one of the last things they usually do before the declare you a nutcase. JK

I went from thinking I had MS to almost completely normal. It was unbelievable. I think if you had Lupus or MS, it wouldn't have been triggered by an accident. You would have had symptoms before your foot injury, unless you are just very young and it's a coincidence.

Have they tested you for Deep Vein Thrombosis lately (thinking of the lumps in your legs)? I assume you experienced DVT already. Did you know that if those clots stay in your leg veins long enough (not sure how long is too long) they can damage the valves all along the vein that push the blood back up to the heart. If the valves get damaged, you're looking at a lifetime of leg pain. But that wouldn't explain the rest of your symptoms. My husband has this damage and his legs hurt when he's on his feet too much.

Don't give up. Keep a journal and keep the entries brief and show it to your doctor. Don't be colorful and wordy. They just want the facts, but it could paint a picture.
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