Neurological problem?

[Lolabaaci]

I have about  burned a hole in my laptop searching online trying to make some sense out of what is going on with me. I have seen many similar posts to my situation but I  thought I would post my particulars anyway.
Thank you in advance for reading I guess I will just give you the run down...

Oct 07- noticed burning pain in my feet and muscle fatigue in my arms and legs. I also began having carpal tunnel symptoms in my right arm. My feet became unbearable so I went to my PCP. She did blood work which all came back normal. Told her I was having difficulty standing long enough to take a shower so she referred me to a Neurologist.

Nov 07- saw Neurologist. Did a slew of blood work i(ncluding Lymes) and EMG NCS. Came back normal except for Carpal Tunnel. Lumbar MRI normal Cervical MRI showed severe stenosis in C5/6. Symptoms contributed to myelopathy. Referred to surgeon.

Feb 08 - Surgery ACDF. Symptoms went away until Sept.

With symptoms increasing the surgeon referred me to a pain specialist. I was put on Lyrica(75mg x 3) and Hydrocodone (10 mg 2 x's daily).
I was kind of just dealing with it until things became unbearable for the past 8 weeks or so. My feet are screaming with pain and burning. I get zingers of pain to my toes. I have stiffness in my ankles and weak feeling in my legs. My arms tremble with fatigue after simple tasks.
I have also had two short episodes with inner hip pain so severe that I could not put weight on my leg. I was perscribed Celebrex for this.

I have had a repeat of MRIs on my entire spine and a CT myelogram of my neck. The surgeon says that "everyone should have a back as good as you". There is no nerve impingement or cord compression. He feels I should see a rheumetologist or neurologist.

This pain and other symptoms is affecting my life in all aspects and I am barely functioning as a mom or otherwise. I feel like this is systemic because I am also dizzy and fatigued.

I went back to my PCP who advised me to stop all meds. She thinks this may be causing these symptoms. I am going to give it a try. I think it is a good idea to see where I am pain wise unmedicated but I wanted to put this out there to see what you all think. Does this sound familiar to anyone?

Thank you so much
Lola

[ggreg]

Dear Lola,
I'm glad you spoke up about your problems, it's great to have an anonymous forum where folks can talk about stuff that scares them, and even better when somebody just might mention a possible cause.  I have to remind you to please get some more labs done about the diabetes, anemia, and other stuff I mentioned in my last post, and also be sure to get enough proteins and whole grains in your diet.  

From what you say about your teaching job, it is possible a shoe correction might help, but I mostly worry that you need some bloodwork and urinalysis done ASAP to make sure you don't have diabetes, for example, which can cause the feet to feel like they are on fire and walking on glass.  I myself got a raft of physical problems, so I know how hard it is to deal with stuff that interferes with your normal life and to get hooked up with knowledgeble and sympathetic physicians who know exactly what to look for in the way of a diagnosis based on your symptoms.

By the way, when you come home at night from your workday, go sit on the tub and put your feet under the cool water from the spigot, it helps a lot with sore feet.  And one more thing, if you start feeling crazy after you stopped your meds, remember that's withdrawals, so if you'll jump back into your meds, you'll feel a whole lot better.
GG

[Lolabaaci]

Thank you so much for your reply. I didn't mention that I am a teacher to young children with special needs. I am on the go all day sitting, dancing, potty training, to the playground and back and some desk time for planning and meetings. I think that is why I am so stiff and hobbling by the end of the night.

Interesting that you should mention shoes.... I have been wearing crocs since this all started. During that time after the surgery I was able to wear sandals and other shoes but not anymore. I wouldn't want to try. I tried another type that people with neuropathy swear by but they are not "cushy" enough.

I told my doctor that I would go along with the stopping med plan for two weeks and stop aspertame whole I get results of new blood tests. I have been slowly stopping the lyrica. I feel in the long run it will further prove my case. There won't be the meds to blame. She said if I am not feeling better than I will go back to the neurologist.

This is just so frustrating. It scares me that so many others seem to have similar problems but don't get an answer as to why. I fear being told that everything is normal and I will just have to live this way.

Thanks for listening. It was a big deal for me to talk about this so publicly....

[ggreg]

Uh-oh, wait a minute.  You had your symptoms BEFORE you took any medication.  While it is not for me to contradict your doc, at the very least PLEZ do not stop your drugs cold-turkey.  Oh my gosh, that can make you some kinda sick.  You can try cutting back very slowly, 1/4 pill per day, no more, wait a whole week, then go at it again.  The process is endless, but it works, if you've got to get off them.  Also, consider visiting another family doc for a second opinion on that idea of quitting your drugs, because I do not appreciate that doc telling you to just haul off and go off all your medicines.  Gee whiz.

I personally think you have something in addition to your spinal stenosis causing your feet and ankle problems.  Basically the main ideas are diabetes can cause all your symptoms, so can a vitamin/mineral deficiency, lousy shoes or walking around on cement or sitting in an uncomfortable chair can do this, various glandular problems like the thyroid being off, and then anemia, these top the list that goes on and on.

If I were you, I'd skip past your doc and go on down to the county health department, you can be seen on a walk-in basis, usually the same day.  Talk to a physician there, tell them about your feet and fatigue, ask will they do a repeat urinalysis for blood sugars, more bloodwork to include vitamin and mineral levels, protein numbers, glandular readings, and a check for anemia.  

In the meantime, I hope you are (A) getting enough protein and whole grains in your diet, the lack of either can cause your problems, (B) you wear roomy-enough shoes (sizes change over the years) with a substantial arch support and good cushiony sole... you might want to visit a podiatrist specialist on the foot issues, by the way, (C) if you stand a lot, wear support hose, it helps circulation into the legs, and (D) if you sit a lot, your posture and comfort have to be exactly right... especially since you've already endured carpal tunnel syndrome, which can be avoided simply if your chair is positioned correctly... so you might need to have a box on the floor of some kind, to prop your legs up, so that your feet are not reaching for the floor, cutting off circulation to the lower extremities.

That last point, about correct posture when sitting for long periods of time, while it might not be the cause of your dizziness and fatigue, you must be completely comfortable as you work at your desk, and this is a bona fide OSHA requirement from the Department of Labor, so do not be afraid to speak to your supervisor about this, if you can.  If all else fails on that front, get up from your desk every hour, do some simple stretching and walking around away from your work, go get a drink of water and look out a window, and return to your seat.  It only takes a few minutes, so no one should say anything about doing that.  If you have to bring in a pillow and your own foot box for comfort, do it.