All blood test came back ok

[Pdk183]

I have had so many tests done and all came back ok. I've had a MRI done and it shows scattered white lesions. I am taking neurontin and sentimet for the nerve problems and leg spasms. The pain and swelling is bilateral in legs. Does this sound like MS or could it be something else?  Nerve study was ok just minor issues. Atrophy in one leg but neurologist would not even look at it. Please give me some suggestions. I can't stand this ongoing pain.  

[squirtatious]

Just wondering, have u had a cervical and lumbar mri taken to rule out any potential problems there?

[Pdk183]

I am not really good at working around this forum yet.  I see that you will be gone for a few days so I was trying to get help from anyone.  I guess I did not do it right when I posted to Dr. kantor.  I will just wait till you return.  Sorry.

[Pdk183]

Dr. Kantor

Can you please read my prior posts and give me some suggestions.  If I don't get help soon I'm afraid I won't be able to walk.  I have some good days where the pain is not as severe but most days walking is really a chore.  I am not one to sit around.  Always on my feet and doing something.  Especially at work and this is really affecting any activity.  Please give me some direction.

[Pdk183]

Hello again

Since my last post I have had no progress with Drs and progressively getting worse. As far as RSD/CPRS I did go to Rheumatologist who sent me for a bone scan and they did not think it was RSD/CPRS. I have also been to a neuromuscular doctor and again nothing. Both of these Doctors have just dismissed me saying "don't know what it is but we can't help you". In the meantime my symptoms are getting worse. Nerve pain head to toe, thigh (front only) pain, tightness and weakness in both legs, swelling in both legs but mainly thighs, severe very low back pain. I can only stand or walk about an hour before I am in severe pain. When the pain is tat bad I can't seem to talk right. Start slurring words bad. (sounds crazy I know). After I sit down for a bit I get up again and start over. The pain does not ever stop but get a little relief sitting at times. When I am sitting I get sharp short sudden pains throughout front thighs. When laying it feels like my body is trembling inside. Vertigo. Randomly drop things out of blue. I get very confused and it's like my brain can't keep up with what I want to say. Used to cut mom and kids hair but my hands seem to forget how. Still the only pain is back and legs. Not hands. This is affecting all I do. I was totally normal 9-10 months ago. Please give any other suggestions.

[Quixotic1]

In CRPS or RSD the pain IS far out of proportion to what anyone thinks it should be.  People with this condition are often accused of being drug seekers and treated quite shamefully.  This is a terribly painful condition.

I would go back to any doctor that listens to you.  The podiatrist would be fine if he could help you toward good pain management or make the neuro listen.  However, I think you have a stinker of a neurologist.

Heather - Thank you!

Q

[Pdk183]

I have read a little about RSD and I do fit alot of it but I was hesitant to bring it up because my pain seems so much worse than it should be. I was hoping to find a fix for my problem and not just have to be on pain meds. Thank you so much for your information. I just got more from you than from 6 appts with neuro. One last question though. Should I see the podiatrist that took care of my foot?  He was excellent. As a matter of fact one of my last appts with him he mentioned RSD but since I already had appts for nerve study and MRI I guess we both figured the neuros would find out what was wrong. Thanks again

Pdk

[Heather3418]

Very informative answer to Pd.  I learn more everyday.  There is so much knowledge that you posses.  That is one reason your presence here is SO important, in the context of MS and in the context of other medical malady's. (plus your kindness and compassion) You have done so much over the years to clear things up for us; that do not posses that hard earned medical degree that you have.

Thanks Momma Bear.

Heather

[Quixotic1]

I have to say that something stands out here and I want you to read about it and discuss it with your doctor.  Your dexscription of how this started and developed sounds suspiciously like a condition called Complex Regional Pain Syndrome.

This is a severe pain that usually begins in a limb (arm or leg) after an injury or a period of immobilization.  The injury might be quite minor like a sprained ankle or a broken toe.  The limb develops incredibly severe pain, which some have described as a burning or an aching.  The limb begins to show signs of changes in the autonomic nervous system such as swelling, change in color (redness or purplish), changes in temperature of more than one degree C.  This change in temp may be hotter or cooler than the other limb.  It usually is confined to the limb that had the injury, but it may become bilateral and rarely can spread to other limbs as well.

This pain is hard to treat and does not respond well to the usual pain meds like ibuprofen or acetaminophen or narcotics.  The theory is that the pain nerves that send signals to the brain have lost their usual pathway of being filtered down before they reach the areas of the brain where we feel them.  Normally a pain signal is filtered by the thalamus so that a small message is sent to the brain.  But, in cases like this, called "central pain", the filtering process doesn't happen and the full pain signal reaches the brain.  The brain sees it as all out, severe pain and just can't deal with it.  the usuall protective mechanism that keeps us from feeling the full brunt of small pain signals is gone.  The result is terrible pain that we have no way to deal with.

I think you should read about CRPS and see if you fit it.  If you do then you should discuss this with your doctor and seek care from a good Pain Management Clinic.

Now, in the context of MS, I have a couple comments.  The first is that I don't see a whole lot here that points toward or away from MS.  Certainly, studies have shown that CRPS is more common in MS than it is in the general population, but that doesn't prove anything.  But, since you do have some neurologic symptoms no one can ignore scattered lesions on the MRI.  

Ans SHAME ON the neurologiist that is disinterested in your source of pain.  He SHOULD definitely have looked at your legs and might have been able to see if there were any signs of CRPS.  Another, older  name for CRPS is Reflex Sympathetic Dystrophy (RSD).  We have talked about this recently on the forum.  Maybe someone can find the thread.

Here are some sites where you can read about this condition:

http://www.rsds.org/2/what_is_rsd_crps/index.html

http://www.mayoclinic.com/health/complex-regional-pain-syndrome/DS00265

http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm

I hope this helps.

Quix

[Pdk183]

Reading over my post I see I said pain in thighs but Its front of thighs and all the way to my feet. Swelling all through both also

thanks

[Pdk183]

Thank you for responding.

My pain is in both thighs (front of thighs only). I fractured 3 metatarsals in my left foot the beginning of June. First I had a ortho shoe then a cast for 2 weeks. My leg swelled alot under the cast so it was taken off and I had a blood clot in my calf. 3 days of lovenox and 2 weeks later the clot was gone. Then placed in a boot until the beginning of august. My leg pain started toward the end of July but I thought it was from the foot maybe though I had pain in both legs. They still swell every day. My thighs feel so weak all the time. It's hard to get started from a siting position and going upstairs. I have the tingling and burning from thighs to toes and my arms. Not in trunk area at all. I have recently started the tingling and burning  In the lower half of my face. My mouth and cheeks feel tight and at times I can't get my mouth open wide enough for a bite. The neurontin is for the nerve pain. When I am still or laying down I have contractions in my thighs. (not the same feeling os RLS). I take sentimet for this. I'm not sure what my neuro is thinking but he says not MS because the white lesions are not in the right area for MS. he is referring me to a rhematologist. My neuro never really let me explain anything and would not look at my legs. Just kept sending me for more test. Most recent eas Lyme and the nurse said it looked ok. Sorry for such a long post but thanks again for taking the time to respond. I'm going crazy with this and rheumatologist is not for another month. Hope all this helps.

[Quixotic1]

Hi, and welcome to our forum!  It is hard to tell what is happening to you.  Your post is very short and doesn't really paint a picture that anyone can interpret.  Would you please tell us about how all of this started?

What symptoms did you have and exactly where were they?

Where is the pain exactly?

You are on meds for nerve pain and a Parkinson med (carbodopa levadopa).  Do you know why the Sentimet was started?  What are the doctors thinking about?

I wish we could help, but there is not enough info here to talk about anything related to MS.  

You might go to our Health Pages and read some of the articles on MS.  I'll be waiting on your answers to the questions.

Quix