questions with peripheral neuropathy

[Angie9798]

Hello-

I have been under the care of a neuro since Feb and will spare all the details.  Finally, about a month ago I got answers...

I was told by my neuro after mri's, vep's, ncs, and emg that she believe I have some sort of peripheral neuropathy.  I am 35, healthy, don't smoke, don't drink, never used drugs and most of my tests are coming back normal...UGH!!  I'd love to find a reason I am going thru all of this.

My symptoms started with vertigo type dizziness ( I actually explain it like my feet are planted on the ground and someone is rotating my hips in a circular motion.  It is weird), tingly legs and things have progressed into heavy legs, weak feeling muscles (although I can still do everything) tired muscles, tight muscles (like I am swollen but I'm not or like my legs don't want to go into the position I put them in comfortably), sometimes my legs feel like they are super cold, little twinges like my nerves are always firing, and things have now moved into my hands too.  My hands feel less sensative, tingly (up the arms too), and mostly what has been bothering me about my hands is they feel super hot and tight.  I also want to mention that any and all of this changes daily and some days I feel 70% normal others 40% normal.  I am also more tired but I think it is how I turn some of this off.  I also feel like a lot of this is positional, my feet, legs, arms and hands fall asleep VERY easily!  I also have occasional pain in my butt.  It is a deep pain kind of like a tooth ache.

I have had lots of blood work and last week had a lp to offically rule out ms.  My labs are back and they show some abnormailites.  I have low Albumin (?) and low igg (?).  I have a phone apt with my neuro next week but I am hopeful that any of you may have some suggestions.

I have also been scared of all this lately.  I have taken a few ativan to get thru it but it isn't helping enough.  I am so scared and not too sure why.  I guess I just wish my dr can find a reason all this is happening.  I don't have lups, limes, guillian barre (EMG/NCS was normal)...UGH!!!

Any suggestions???

Thank you so much!

Angie

[Angie9798]

Yes, my EMG and NCS were normal but will be redone in the fall just to recheck muscle tone.  UGH!!!

Any thoughts????

Thanks for asking

[TwitchyFirefly]

Have they done any EMG or other nerve conduction tests?

[Angie9798]

Thanks again Ray,

Actually, I am on no meds....well except for the occasional ativan that I need to get thru this.  My thyroid was dropping but has now gone back into normal range.  So, yep, we did explore that.  I just can't wait for this to all be over...I hope.  

My next apt is on June 3rd with my neuro :o)

Thanks again!

[rod44]

Hi Angie, Are you on any prescribed medications like lithium that can cause liver problems?
Have you had your thyroid checked as this can also cause some of your problems.
Vertigo can be a symptom of anxiety but with the abnormal blood results it is best to follow up with your Neurologist.  

Ray

[Angie9798]

Hi Rod-

I had brain, c spine and t spine done to rule out ms.  Part of the problem with everything was that when I originally went to the Dr (my primary care) on Jan 11th, he told me that I am showing some signs of ms.  What brought me in was the vertigo and right leg going tingly off and on.  But then after seeing him things just progressively got worse.  To the point now where I am thinking can this be more anxiety caused or is it truly a type of neuropathy???  If it is anxiety, why the original symptoms?  

So far all testing is normal with the exception of low D, low albumin and low igg.

So...???  any thoughts?

[rod44]

Hi Angie. What MRI have you had done?

[Angie9798]

Thanks!  I hope we both get answers.  A month or 2 ago the neuro I was seeing (and didn't like) thought that this may all be anxiety.  I LOVE this thought!  But my new neuro says no.  

So we sound similiar huh?  Do any of my symptoms sound like yours?  Are you on meds?  Can I ask your age, health (drinker, smoker...etc..)?  How are your muscles?  I can still do everything but I get the feeling that my legs are going to fail me and give out.  Have your symptoms been increasing or staying the same?  I still feel like mine are increasing.  Are you still able to do everything?...I know I am so full of questions.  I probably need to go thru your posts to find all this out.  I stay active and busy on days that my legs are ok.  Some days are pretty bad!  This stupid dizziness and the legs giving out sensation.  More so, in just the past two days my hands feel like they are fevered (but don't ache) and are tight and swollen.  They are not swollen though.  I am a stay home, extra busy hyper mom and I try to keep up with everything :o).  My kids are very active so I am glad for that because lately I feel so scared that I would let myself get into a rut.  I need to get on some anti anxiety meds!!!

Please tell me more about you.  

Thanks,
angie

[somethingfast]

hey angie,

going through similar things for last two years.  no answers for me either.  did the mri's, spinal tap, blood tests, etc.  no answers.  but i suffer from increasintly severe peripheral neuopathy and im losing hope that im ever going to feel good again.  tired all the time too.  hard to get out of bed in the morning.  no answers for you but wanted you to know youre not alone.  i hope you get some answers soon :-)