Is it MS?

[ellybean04]

Okay, so I am a 29 year old female who is trying to get DX.
In April, I had an episode lasting a little over a week, with numbness, a tightness on my lower back (like a belt) tingling everywhere.  I was tripping and bumping things, dropping things. Also had tremors/spasms and no strength.  Went to a doctor who referred me to a neurologist.  After the physical exam, he ordered an immediate MRI thinking it was for sure MS.  The brain and neck MRI came back clean.  After about a week, all symptoms went away.  Then a month ago, I had another episode.  Numbness, tingling, tripping, fatigue, tightness in back area again, and tremor/spasms so bad, whenever my kids would touch me it would set off a tremor that would last like 20 minutes.  I had a nerve conduction test done-didn't find anything.  Had a lower back MRI-nothing.  Had a nerve biopsy- have small fiber neuropathy.  
My question is:  Does small fiber neuropathy cause all these things?  It would explain the numbness, but the tremors, and the belt of tightness sound like MS to me.  Should I push for more tests?  How many episodes do I have to have for them to figure this out?  
Thanks!

[Suzie9]

Hello,

I am 29 too,mum of two young kids.My first episode was 4 months post natal with my second child around two years ago now.I just wanted to write as the back tingling thing sounds very similar to me.I got it after a night out.It was very intense to begin with,eventually died down but remained intermittently most days.I was recently diagnosed with clinically isolated syndrome but have lesions on the spine and brain.

Yoga keeps my tingling and burning in my spine at bay,if i don't do it for a few days it starts to come back.Only recently have i had other symptoms,twitching,especially eyes,tingling,mainly hands and feet,mood swings(actually they have been there a while),slightly numb right arm, and other weird sensations.My neuro says these are not a relapse but stress related for me.

I had 3 mri's,the last one was a 3T machine.All scans showed no change so my lesions came up on the less powerful machines too.I have two on my spine one is around T2 the other T8 this is where i get most the burning sensations too.I have 1 or 2 on my brain too.The tingling is sometimes concentrated close to spine but also sometimes all over.It was across my whole back when it first started and up to my neck.

Keep us up to date with how you go.

Suzie.x

[OperaMBA]

What a jerk this guy was..   In my 7 year, 3 neuro survey, I have determined that 2 out of every 3 neuro's possess God Complexes.  The first one, who was on call when my arms and legs were paralyzed, he believed, he was patient, he was thoughtful.   The next two, when they don't see an MRI image full of lesions, they don't listen to a word I say about what has happened to me.  I chewed the one out last week when he came in all smiles "everythings great, your nerve conduction test is completely normal".  If he'd have made the "google" comment I would have punched him right there.  Of course, with my lack of control over where my arm goes, I'd have punched him in the ear instead of his nose (where I would have aimed!)   But hey, my nerves are functioning perfectly, right Doc???  

Anyway, in conclusion, good luck with your pursuit of a better neuro.  

OperaMBA

[ellybean04]

Thank you all for your help.  I think I will look for a different specialist in another state!!!  We are pretty limited on doctors.  I will let you know more.  Thanks!

[shoshin]

I don't know whether small fiber neuropathy can cause all those things or not, but the first two neuros I saw thought most of them could be caused by peripheral neuropathy (which is what they said I had).

I finally went to see a peripheral neuropathy specialist b/c the first two said my neuropathy was idiopathic and I was really frustrated that they didn't know what was causing this problem and thought maybe I could get a more useful answer from a specialist. The test that set me on the track to an MS dx was the somatosensory evoked potential (SSEP), which showed problems in the central nervous system so you might want to look into that.

Did they say what they think is causing your neuropathy? Apparently, how many people end up in the catch-all idiopathic category varies widely depending on where you go so if your neuro doesn't seem to be on top of trying to figure it out, you might want to try another one. The PN neuro did say that most people with idiopathic neuropathy are in their fifties or sixties when they get it and they have painful small-fiber neuropathy. I got the impression that small-fiber neuropathy is usually painful.

Sorry, I think that was a little disjointed. I am somewhat incoherent tonight, but I hope that was at least a little helpful.

sho

[Sunnytoday]

Whoa, I hate to say this, but did you some-how pick up my old, awful, hateful Dr. DWI (deal with it) here on the Gulf Coast in AL. He prescribed Cymbalta, said it was all in my head and ignored how bad I was getting. I had to fly to NYU in NY for help and they are moving fast to get help for me. Oh, and my dr. DWI said my MRI's were clear, but he never bothered to read them himself, just trusted the radiologist, at NYU they said both of my MRI's were abnormal.

Watch out with that Cymbalta. I can't tell you not to take it, but I will warn you. My eyes got very dilated and I threw up something terrible, for three days I hung over a bucket until I said ENOUGH... I refused to take anymore even though my family didn't like it, and my neurologist DWI said i had to take it for a month at least. Be CAREFUL with that stuff... if you don't need it for true depression it can throw you out of wack!

Look for a new doctor... run in the opposite direction, ok?

hang in there, ok! and keep us posted, update, and stay here for support. These folks will hang with you through everything, they did for me!
~Sunnytoday~

[Lauri8967]

OK - BOTH of those comment by him were completely uncalled for.  But particularly the snide, sarcastic comment about "new kind" and google, sounds like he means your Dxing yourself by looking up info on the internet.  Im telling you, doctors HATE that we have access to medical information.  Then, they are not the intellectual gods they think they are.  Many docs think we become hypochondriacs after reading up on our symptoms on the web.  Sometimes this is true, but not all the time, by any means.  Your symptoms sound very much like MS, and I would have also questioned the small fiber Dx.
In my opinion, based on my vast experience with doctors, I would absolutely look for a new doctor.  This doctor already has you Dxd in his mind, and does not in any way seem as if he will keep looking.
I may sound a little angry here, forgive me, but its too bad you didnt say, "Have you always been that unattractive?"  What a jerk!  I just really think that by making the google comment, he will not take any complaint you have seriously.  I could be wrong, of course, but his attitude seems to point to that type of treatment.
Good luck, and Im sorry you had to deal with someone like that...
Lauri

[ellybean04]

So I went back to the neuro today.  He says all we can do it treat the symptoms and wait.  Wait for what?  To go down hill faster?  He gave me cymbalta because the lyrica isn't helping.  I really don't like this neuro.  He said "have you always been this chunky?"  What a guy huh?  Do you think I should get a new neuro?  This guy listens sometimes, but I think he is dismissing me now that the biopsy came back with small fiber.  I asked him why all the info I find on small fiber doesn't "fit"  me.  He said it is a "new kind" of small fiber that "google" (said with a sneer) doesn't know about yet.  HUH?  

[Heather3418]

*Not trying to talk you into a diagnosis.....*  Sorry about the typos.  My fingers work faster than my brain....  Another MS symptom perhaps?  LOL

[Heather3418]

YES! YES!  You are totally correct.  If you have not been having symptoms for very long, absolutely YES it can be too early for the lesions to appear.  See you know more about MS, than I probably did at the beginning stages.

You probably already know that 5% of people with definite MS never show lesions on MRI.  They will however have an abnormal Neurological exam, which is a red flag to a Neurologist.  As I have heard, that 9 times out of 10 lesions will eventually show up.  Don't forget that you can also have micro-lesions.

Now I am not trying to you INTO a diagnosis of MS.  I would never wish that on anyone.  I just want you to get some answers to explain all of your symptoms.  The pressure you felt around your back is what we call the "MS hug."  It's a very common complaint.

Please keep us updated and make sure the doctor keeps searching for answers.  If you do have MS, it's in your best interests to be treated early in it's course, wiith Disease Modifying drugs.

All the Best and we are so glad you joined us.

Heather

[ellybean04]

Yeah, I went in during the second attack and that is when he did the nerve conduction, and the skin biopsy.  I can't find anything about small fiber neuropathy that includes tremors, whole body tingliness, electrical sensations everywhere, the tingling belt around my back and no pain.  My feet do not hurt, my muscles aren't aching.  I just feel like since they have a DX for the small fiber, that they will dismiss the rest of the symptoms.
I am not sure what the strength of the machine was.  Is it possible since I haven't had this going on very long that the lesions may not be able to be seen yet?  
Thanks for the help!  

[Heather3418]

If your MRI only included the cervical spine, one needs to be done of the throacic spine as well.  That is a frequent area for lesions.  What was the strength of your MRI machine?  Lots of lesions are missed on the lower strength machines and sometimes you can have what they call "micro-lesions," that cannot be seen, unless a very skilled radiologist is looking for them.

Most of all, WELCOME to the MS Forum.  We are glad that you joined us and hope that we can help answer your questions.

You "second" episode is suggestive of an MS attack, but not totally conclusive.  Does your Neuro know about your second attack?

Heather