Getting the right answers to years of issues

[cam817]

Hi, I just turned 55, female and was an active road biker, mom and wife. Type of person that can't sit still and always buzzing about. Still am to a point.  This started years ago with a slight numbness and tingling in the back of my legs, it would go away but upon returning it seemed to spread to my feet, go away, now it is will me all but a few hours in the morning. I wake and have a sort of normalcy to my life for a bit. As time goes on the numbness has moved to my face, tingling, electrical shocks.  My GPs all said nerves stress, gotta relax...needless to say after a while I found a new group. I have a history of a small dime size shingle outreak on my hip but had nothing until recently...a outbreak on my left shoulder.  I am currently seeing a Neurologist at USF.

My nerves misfire throughout my body at times, painful.  Most times it is mainly my legs and feet that feel the most effected, it feel like I am wearing leather gloves. during a skin biopsy on my ankle I felt nothing, did not feel the injection, did not feel the medication go in to numb the area but di feel it in a section of my calf. During a recent SSEP test I lost feeling in the same ankle during the test and the tech had to turn the "amps" up more to get a good reading.  Both legs could not tolerate the higher settings like my wrists could.  My kness buckle from time to time and it is hard to get u and straighten my knees and walk well...most times I am ok but others I am off balance and it feels like I am pulling to the right.

It was thought I may have trigeminal neuralgia on the right side effecting all three branches of nerves in the face. But as time goes on it has efected some of my left side but not as bad.  There is a tightness in the throat on the right side and I have felt like food could not pass down properly but that goes away. There were days when I felt in a fog, disoriented and had dizziness when looking up or to the left. I have areas of surface numbness over my face, arms and legs and feet.  

I have had MRIs with contrast, bloodwork (some vitamins needed to be added like B12 and 6, folic acid), spinal MRI and CTScan. EMG, SSEP and skin nerve biopsies (I do not know the results as yet of the last two, the biopsies and SSEP) now we are to meet with the doctor to discuss further testing and talk results and find out the results.

I just got my husband through a major illness and almost lost him twice, he is healthy now and back road biking...I can not keep up the pace with him.  My girls are grown and both have careers, the youngest is still in college but doing well, works full time and supports herself.  I feel kind of left behind...self pity is not good but I just can't do as I did before. I may have 2 or 3 good days and two bad days follow. I crave sleep sometimes. The doctor told me to not be hard on myself but I feel kind of alone in this. I wish I knew what was wrong yet afraid to hear an answer. Is it MS, Internal shingles...will the spinal tap show the answers, then what. The said they do not think it is MS based on my MRI. My aunt just passed from ALS (noninherited), they said it is not that.

I know we need to rule things out but it was not until recently we actually got new doctors to listen to me.

[cam817]

forgot to mention...I am on gabapentin 800mgs a day...it helps with the facial pain (I had slurred speech and was hard to get the words out) helps some in the discomfort in the rest of the body. The feet are uncomfortable all the time.  I also started getting back a belt type sensation around my waist and lower rib cage area...like my skin was to tight there.

[cam817]

Skin biopsies came back negatitve...don't know the results of the SSEP test yet.  Doctor is proposing to wait and recheck me in January...not sure why my feet feel fuzzy and heavy like I am wearing leather socks or why my face still has issues. Why the numbness is up the front of my legs.  

Is it typical to take a wait and see approach...I have had the numbness in my legs for the last few years, it was the last 6 months my feet are involved. Why didn't I feel the numbing solution given during the skin biopsy in my ankle and I felt it in my calf?

What to do?

[LilMinnie]

I just wanted to say Hi and welcome you.  I am undiagnosed and going through the diagnostic process too.  It is so difficult!  I've also had the dismissive doctor experience.  I'm glad you are finally working toward getting answers.

I'm afraid I don't know enough to answer any of your questions, but there are lots of knowledgeable folks around here.

Take care,
hugs,
Minnie  :)

[cam817]

Thank you Minnie, part of the doctor putting this off could be because Aetna took away the plan that would pay 70% of testing and each member of the family has to meet a $2000.00 deductible each calendar yr. This starts October 1, 2012 and runs to Dec 2012, then a new calendar yr starts Janurary 2013.  So we get to eat $4000.00 out of pocket on testing.

I don't even know the test results on the other test done, I am asuming they were negative as was the skin/nerve biopsy.  

2weeks ago I had a shingle out break on my left shoulder, never had it there before and it was painful. I had shingles the size of a quater on my right hip in 95...6 smaller size spots in the same areain the following yrs but nothing in the last 3 yrs.  One thought was internal shingles, waist tightening and leg numbness...I guess you can have outbreaks without physical signs. One doctor guessed and said it could be that, sent me home with numbing patches and meds.No real diagnosis.

Now my feet feel tight, numb and by the end of the night it feel like I have socks on, waxpaper under my feet and I am gliding on the carpet when I am actually walking on tile.

We are going back to USF tomorrow to talk to the doctor and let her know our concerns, armed with a list of questions.  

[maxthecat43]

Have you had periods of continuous dysfunction?  You can cause a temporary flare up, by overdoing it...  But if  it is MS, it takes a while to remeyelinate.  An acute flare up, like happens in relapsing/remitting ms will take some time to stabilize- whether you return to your previous normal or not.  In progressive MS, you will see a gradual decline in function.
It's hard to know what's going on, because just about every symptom MSer's experience can be found in some other condition.  Even stress can cause some of them (and it sounds like you have had a TON of stress).  I am not trying to minimize this at all...  I just it helps to consider everything- even the things you don't think it is.


It might help you to try to work up a history of your symptoms, along with the approximate length of time you had them.  (For instance:  January 1983 right side weakness that lasted for six weeks.)  That may help you with your doctors a little, but they can still take a very long time to figure things out.  My neurologist says that they (neurologists)  know that their knowledge is incomplete.  It frustrates them too.

Best of luck to you.
Tammy

[cam817]

I have my past history, tests and email the neurologist if anything changes or there is a bad episode.  The numbness in my feet and lower legs is everyday, does not go away...in the morning it is not aparent until I am up an hour or two. Walking, doing housework, shopping it is always there, evening is worse.