Limited symptoms, MS?

[NeoGeoH]

My otherwise healthy 39 y-o wife started experiencing fatigue and tingling and numbness late last summer.  It started in her left hand, and eventually her left foot, moved up her arm and leg and started to involve the right hand and foot.  This happened over about 6 months.  He saw a neuro who said it was small fiber neuropapthy.  She had no other symptoms.  And she came through the neuro exam with great results.  All of her blood work came back normal as did her brain MRI with contrast, (no legions found).  Then in late December she got these awful headaches and pain in her neck and shoulders.  We thought is was the very mild chiari they identified on her MRI becoming symptomatic, but after another MRI with CINE flow and a cervical and spine MRI with flow (but no contrast) showed no problems and good flow through out her spine, neck, and head, Chiari was ruled out by 3 Chiari specialists and a Chiari Neurosurgeon.  She also wasn't experiencing any of the other "typical" Chiari symptoms.  SHe has had no weakness, no vision problems, no other ms-like symptoms that we know of.

We met with a new neuro who ordered more blood work and nothing was found.  During his exam, he found many sensitive spots on her upper back, shoulders, neck and back of head.  He believes her neck pain and a lot of her headaches are related to the muscles in her shoulders and neck agitating the nerves and causing the headaches, like a tension headache.  A cycle where the muscles hurt the nerves, the nerves cause a headache, and the headaches cause tension.  She is scheduled for PT next week with a Dr that specializes in headaches, neck, and spine problems.  Her numbness and tingling seems mostly limited to her left hand and foot.  But the weird thing is that while it is always "there" is seems to get worse when she is stressed, as does the neck pain.  He put her on 100mg of Amitriptyline at light and it has taken the edge of the headaches and helped her sleep.  The only other symptom she has had is in the past couple of days she say that she has this strange ache/pain in her left hip joint.

I guess I am asking all you experienced folks if in light of all these normal test results, normal neuro exams, normal MRIs, can MS be the likely cause of her tingling and numbness and maybe this recent pain?  Or would it probably be something else or maybe she is one of those folks that has tingling and numbness w/o any reasons.

[jujuminx]

I echo what the others have said here.  There is no way to tell at this point. The negative test results are very good news and it sounds like the dr is on the hunt.

Stress can make anything worst, no matter what the affliction so concentrate on getting your wife to find ways to get herself less stressed (yes, I know this seems silly under the circumstances).

From everything you have written, my opinion is that the dr is handling this well.  Of course anything is possible but at this point there isn't a reason not to follow him on this.

Be careful about mentioning MS especially to a neurologist. They are interesting characters and they like reaching their own conclusions. If you do mention, be gentle about it.

Good luck to you and keep us posted. Sounds like you are going to be on this road for a while longer.

Julie

[JaneK1975]

MS is so different for each individual that it's just hard to say. Your wife's symptoms are not exactly like mine, but I do hear some familiar things, like the numbness and the neck/back muscle tension/headache thing.

I hope others will chime in, but in the meanwhile, there is a thread here where many have posted their diagnosis stories. It includes a lot of info on symptoms and also on the diagnostic process for MS. I hope it helps: http://www.medhelp.org/posts/Multiple-Sclerosis/What-I-Went-Through-to-Get-a-Diagnosis/show/100981

[NeoGeoH]

Thanks for all the comments.  She is seeing her new neuro regularly now, so he should be able to track all her symptoms.  He  seems like a good doc, very engirded and knowledgable.  We are lucky that we have pretty good access to many great professionals at the Cleveland Clinic.  I am hoping that the T&N don's get any worse, and that her headaches can be dealt with PT.  She doesn't complain about them anywhere near the way she used to when they started.  Although after talking to her neuro he believed that they were caused in part by the cycle of tension in her neck, nerves, and headaches, and was made worse by amounts of OTC ibuprofen and acetiminifen she was taking and causing rebound headaches.  Like I said, no more OTC stuff and more rest, she is feeling them a lot less.  Hopefully next time we meet with him he will have some answers or strategies in mind.  If he doesn't bring up the possibility of MS, I will.  We may even push for a LP to try and rule it out as a possibility.

I know there are no quick answers to any of my questions like "Does this sound like early MS" but not have any idea, is driving me nuts.  Everything I read while it states MS is different for everyone, I was just wondering if anyone ever saw these types of symptoms alone that eventually led to a MS diagnosis?

Again, thank you all for the kind words and support.

[Sidesteps]

I have been seeing a massage therapist for spastic neck and upper back/shoulders. I am extremely tight and the MT has suggested that I may need to see an accupuncturist to release the muscles.

One thing I've noticed is that there is a couple areas in my trapezius (should blade area) that when working the knots out, it will radiate down my arm and I'll get a tingling and numbess sensation...almost like hitting your elbow. Kinda painful too.

Hang in there, it sounds like they are working hard at trying to sort this out. I'm sorry she isn't feeling well.

[JaneK1975]

I agree with Jen that numbness and tingling (and any other symptom for that matter) always occur for some reason. Sometimes doctors have a tough time figuring the reason out, and sometimes the reason is something that science hasn't yet identified, but there has to be something going on to cause abnormal sensation.

Will your wife be seeing the new neurologist regularly? A lot of neurological problems only become clear to doctors over time, so I think her best bet for figuring out the underlying cause for her symptoms would be to get under the care of a good neuro and see him/her over time. It's usually helpful for symptoms to be documented by a doctor, too, so regularly seeing the same neuro can be helpful.

I'm sorry you guys are going through this and I wish you the best. I'm glad she's getting help for the headaches - they can be so debilitating. I have found myself in that cycle of muscle tension... headache... more muscle tension... more headache... before. It's not cool.

- Jane

[jensequitur]

If the tingling and numbness is limited to her left hand and foot, it's possibly just a compressed nerve that's causing the problem.  If it moves around, it's much more difficult to figure out.  Numbness and tingling can also be caused by a panic attack.

However, with the severe headaches and sensitive spots on her shoulders and neck, it's possibly migraines, or fibromyalgia!  

It's very difficult at this point, with clear test results, to identify what's going on.  My belief is that nobody has numbness and tingling for no reason - the doctor just can't figure out what's causing it.  Be prepared for disappointment!  But it does sound like your doctor is treating the symptoms, which is great.