Possible MS? Please advise.

First off, I've been hesitant to post cause I'm not sure if my symptoms resember MS or not.  I'm not one to google my symptoms or anything, but my GP suggested the possibilty of MS and I'm concerned.

I've been having symptoms since summer 2006.  It all started I beleive with headache that lasted for several days.  That led to pains in my arms and hands, then my feet.  Also had weird sensations of water on my leg and feet (but there wasn't ever anything there).  I also had muscle twitching all over...wasn't localized at all.  I did see a neuro who ordered a brain MRI with and without contrast that came back normal.  He said I didn't have MS and sent me on my way.   Eventually my symptoms resolved for the most part.  Then about 1 year ago they came back agin.  Although this time they are presenting with dizziness, brain fog, partial numbness in my toes (comes and goes) shin pain, hand pain, foot pain, ankle pain, knee pain, eye pain, ear pain, chest pain, arm and leg weakness, fatigue both mental and body, and burning sensations on feet, arms, belly, and butt.  All these symptoms are sporadic and aren't constatnly there.    Sometimes it feels like my skin hurts too, and my muscles ache like I have the flu, without fever.

I had antoher mri this time brain and cspine again they are normal.  So again they say not ms, but my gp says it is still possible, but that a lot of my symptosm don't totally match.  

I've been tested for auto immune, and lymes, and vitamin def too all are normal.    Right now we're just treating my symtpoms with antivert, and neurotin.  Not helping much.

I don't know what else to do.  Does this sound like MS to you?  Any other ideas?  I appreciate the help.

[Deb61]

Your symptoms can be due to many different problems and diseases.  Read about MS in this forum's health pages (upper right hand corner).  Read about some of the mimics of MS.  It sounds like you've had some mimics ruled out, but not everything has been explored.  

Looking at your list of symptoms, I cannot tell with any amount of certainty at all of what could be causing all the problems.  I wish to help you with the little experience I've had through the years, so here it goes.

I don't know if lyme's disease can be ruled out with certain blood tests (I forget if it's the Western Blot or ELISA that may be unreliable).  You may want to investigate this more.  There are sometimes false negatives, from what I hear.  Also, certain infections are not picked up on certain tests.  As you can tell, I don't know much about the topic of lyme disease, but it's worth looking into.

Also, not all autoimmune disease can be ruled out with blood tests.  Plus, not all of the blood tests were probably run on you.  It would take quite a bit of blood taken from you to do that.  I had 15 vials of blood drawn to rule out some causes.  Have you seen a rheumatologist?  This may be a direction you could explore (especially if the neurological route doesn't pan out).

I would go back to the neurologist, or see a different one, if you haven't seen one in over a year (even if your MRI was normal).  Perhaps now more evidence of something wrong will be seen in other tests besides the MRI.  Did you have an MRI of your spine?    

Have you had a TSH test to rule out thyroid disease?  Thyroid disease can cause neurological symptoms and joint pain as well.  

Wishing the best of luck,
Deb

[rexth]

I've seen a Rheum who ruled out auto immune and I've also had my thyroid tested several times.  

Lymes disease seems to fit my symptoms but my gp said it was neg.  MS is what is left....kinda although testing has been normal and I'm not sure joint/muscle pain is a symptom of ms?

Thank you for your reply :)

[Quixotic1]

Hi, and welcome to the forum.  I have to say that I agree with Deb that a lot of your symptoms do not sound like MS.  I am especially struck at how widespread your pain is.  MS tends to cause much more localized pain and abnormal sensations.

I also am pointed toward Lyme Disease, or something like it.  The problem with the current Lyme tests is that they are often falsely negative, especially the one, called the ELISA (or antibody screen).  This one is what doctors are instructed to use as a screening test.  The better one - tho still not perfect - is one called the Western Blot.  Most doctors, it seems, do not know this.

No, having joint pain is a tip off that this is very likely not MS.  MS does not cause joint pain, nor joint swelling or stiffness.  However, the joints are a prime target of Lyme disease.  If it has been some time since you saw the Rheum it might be worth another go-round.

You might wander over to the Lyme disease Forum here on MedHelp and tell them your story.  Three years seems a long interval for the symptoms to appear, but it would be worth asking them.

http://www.medhelp.org/forums/Lyme-Disease/show/148

Quix, MD

[rexth]

Thank you for your help Quixotic.   I tested Neg on the western blot test, but supposebly I did have a couple bands thata said "REACTIAVE" , but overall it was Negative.

Would ankle pain, hand pain,feet pain, and spine/shoulder pain be considered joint pain?  I don't get ANY warmth or sweling with the pain.   It's really weird.  

My neck and shoulders hurt too.  The weakness and cognitive issues are very scary.  My body feels extremely tired and shaky, and I'm dizzy.  Of course this is constatnt...it is always coming and going which I've read is common in ms.  

Well I feel a bit releived that you feel this is highly not ms.  If not lymes then waht else?  

I guess I should get back in to see the Rheumotologist as it's been awhile since I saw him and at the time I wasn't having the pain and joint issues as bad then.  Itwas mainly the dizziness, and mild pain.  He suggestd lyme too, but again test was neg.  I've had two neg tests.  I think the Rhem did the Elisas one and my gp did a western blot that showed a couple bands.  

So ms wouldn't be causeing this type of pain?  What kind of pain do ya'll have then?   What about the episodes of numness/ tingling in my arms/hands and feet?  LIke i said I"ve never had complete numbness it just feels altered.  My arms and hands have also been falling asleep EVERy night and it's driving me crazy.  This never happend like this beofe sick either.

I"m stumped. The dr.s are stumped.  My Gp actuallhy calls me her "mystery patient" .  It's very unsettling that no one can figure this out.

[rexth]

I also wanted ot say that my ears sometimes feel clogged and get sentsitve to noise.  I've seen a ENT also, and normal there.  I've seen tons of speicalists, but everuthing is normal.  I wonder if it could be something hormonal?  I've never seen a ENDO dr... that's pretty much the only dr I've never seen lol!

[Heather3418]

I am so sorry to hear that you are dealing with so much widespread pain.  I have to agree that Endocrinologist and a repeat with the Rheumatologist is in order.  I don't understand why you keep testing negative for Lyme disease, but as a lady with a son-in-law that has Lyme disease and Lupus, it sounds alot like Lyme disease to me.

This may be a stupid question, but how is your stress level, in your everyday life?  It's very true, that increased stress can cause alot of havoc in the body.  I know that you are stressing out about all these physical symptoms.  Of course, anybody in your same situation would also.  Try to keep that under control if you can and get those appointments made with the Endo and a repeat with the Rheumy.

Would you please keep us updated about how you are doing?  This puzzle of symptoms has me wondering what this could possibly be.  I happily say that this does not sound like MS...thank God.  It's certainly a disease that you wouldn't want to have.  At least if it's Lyme disease, it can be treated.  Your doctor may want to start you on a trial of antibiotics to see if that improves any of your symptoms.  I'm certainly not a doctor, like our Quixotic is, but if I were in the field, that's what I would try.

Best of luck to you, dear heart and I hope you get to the bottom of this soon. I just hate to hear that you are suffering so much without answers.  This certainly happens with people that are trying to find out if they have MS.

Heather  

[rexth]

Thank you for your nice comment.  The pain isn't always there... seems to come and go, but when it is around it isn't fun.    

My stress levels are normal.  Although like you said living with this and having no answers is worriesome and in itself causes me some stress.

I hope my GP will refer me to an Endo, last time I brought it up she said it wasn't necessary cause my thyroid is normal.  But I'm sure there are other problems hormonal that he could check for.    I'll see about getting in to see the Rheumy again as well.  

I'm glad this isn't sounding like MS to any of you.   I really appreciate your help.

[Ovieloverinla]

I feel your pain too, except my MRI came back abnormal, unfortunately that is all my nuero has been able to tell me!

I am no doctor, but has anyone mentioned Fibormyalgia?