extreme leg pain

[dancingmom]

Approx. two years ago I began to develop pain and severe nighttime cramping in my calves. At the time I had just begun a new exercise regime so I did not think anything of it and thought it may be some lactic acid build up. A week later I bagan to develop bladder symptoms similiar to a UTI and because it was christmas eve I called the MD on  call and he called in and antibiotic for me based on symptoms. The "UTI" never got better despite 3 courses of antibiotics and the sx got so severe that I could not even sleep because the need to void was so strong.This whole time I was still experiencing the leg sx. My PCP sent me to a urologist who performed a cystoscopy and found nothing. He put me on Ditropan and Pyridium (neither of them helped). I continued to experience these "UTI" sx for another 3 months and then they magically disappeared on their own. The leg symptoms unfortuntely remained. At this time I began to develop numbness in my toes that gradually traveled to my foot, ankle, knee, hip, waist, ribs, arms, hands and shoulders, this occured over a three day period. I also developed excrutiating neck pain. I was sent to the emergency room by my PCP in fear that it may be Meningitis.The ER drew blood,obtained an urine sample, and did a chesr x-ray. The cxray came out negative, the UA showed nothing, and my blood work showed: a slightly low WBC count of 3.4, slightly elevated MONO at 14, and a slightly low ABS LYMPH at 1.0. The rest of my CBC, HEM-DIFF, Chem/ Electrolyte panel was normal. They sent me home with the diagnosis of acute viral syndrome and myofascial pain syndrome. The numbness gradually descended just as it had come but remained in my hands and feet. I continued to see my PCP regarding the numbness and pain in my lower extremities. He ordered a sed rate, CRP,  Rheumatoid factor,ANA screen, B12, Folate, Iron , folate, monospot, lyme disease, ferritin,  CPK, and TSH levels. He also ordered a brain.cervical spine,  Thorasic spine, and lumbar spine MRI all came back negative except for the lumbar spine which showed minor degenerative disc disease without neural compression at the L 4-5 and L 5- S 1 levels. He referred me to a local neurologist who did not think that the lumbar spine could be causing these symptoms. He performed a bilateral upper and lower extremity EMG. These also came back negative. Later thatmonth he performed a lumbar puncture which showed elevated CSF protein @ 56 and the totalcell counted ( I am not sure what this level is) was abnormalat 20.The rest of the numbers were within normal limits. He said that I did not have MS and told me to see a pschiatrist because all the sx were "in my head." I decided to seek another opinion since now I am in so much pain with my legs that I am on 100 mcgs of a fentanyl patch and 40 mg of oxycodone every 4 hours for break through pain and not getting pain releif. My PCP sent me to an out of town neurologist where they specialize in MS. They repeated all of the MRI's and found no lesions on the cervical, thorasic, or lumbar spine, but did find two lesions one on the pons and the other in the periventrical area on the right side, she reveiwed my first set of MRIs and found them there also ( they were misinterpreted) .Somatosensonsory evoked potentials and visual evoked potentials were performed. Both were negative, She drew ANA,Vitamin D levels,AMO titer, copper level, and sjogren's antiboties. All  of this testing was negative except for a slightly low vitamin D level.I was placed on 1.000 mg of Vitamin D a day and told that based on the testing MS could nod be excluded so she wand to repeat the testing. She set me up with a pain clinic for my pain. I have been going to the pain clinic and in attemps to control the pain the MD removed me from the fentanyl patch and oxycodone. I am now on Lyrica 100 mg three times a day and Methadone 40 mg every eight hours. Of course I did not start on these doses I was increase to these in attempt to control the pain. Each dose would control the pain for two weeks to a month and then it would return and worse than before. The pain I have now is from the hips down to my toes with burning in the upper thighs and foot arches, I have it twenty four hours a day. Cold makes it worse, most of the time heat helps, but sometmes it bother it. The numbness in my hands comes and goes, along with the numbness in the feet. My toes on my right foot are constantly numb. No tingling of any extremity where the numbness is. Two weeks ago I began to go numb like the episode I MENTIONED EARLIER and lost vision in my left eye for one day. I called my neurologist and she immediately ordered a MRI of the brain and cervical spine along with visual evoke potentials and some blood work (I am not sure what). I was told the blood work was good and that my Vitamin D level is now normal but contnue the suppliment. The visual evoke showed nothing., the cervical MRI was normal as before, and the brain lesions were gone! Now they have no clue what is wrong with me. They have offered me no treatment except the pain meds which I hate because I am extremelty sleepy all of the time and question if I should be doing my job as a nurse.or driving a car. If I sit down for a second I fall asleep. As far as symptoms I currently still have the pain in the legs as described, toe numbness in right foot that feels like my socks are trapped in between my toes but there not, weird vision in my left eye with no known cause, and numbness in my fingers that comes and goes I am also so tired that I feel like I could sleep forever..As far as meds that I take I am on Topamax 50 mg twice a day for migraines, the lyrica and Methadone as stated earlier, Ambien as needed for sleep, Vitamin D 1000 mg a day, and Effexor 75mg a day. When the leg pain started I was only on the Topamax but I was on it for awhile prior ( length of time I don't recall) and I tried stopping it for 2 weeks to see if symptoms went away and thet did not. I am hoping that you can offer some help, I am desperate for releif from this pain as I am not even 60% releived of pain on my current doses of pain meds. Thank You!

[Peggy50]

Hi dancing moon. Just wanted to say I really feel for you. I'm so sorry you are going through all this pain, and hope you will get some light at the end of the tunnel. Gentle hug for you. Take care.

[dancingmom]

What is the diffference between a Neurophysician and a neurologist? I  currently take a vitamin D supplement 2 tabs a day plus what is in my multivitamin. I alsotake calcium 1500mg a day  because I had a complete hysterectomy when I was 25 due to Endometriosis. I was tested and was found to be vitamin D deficiant at  one point, but 2 weeks ago was retested and was okay. I stopped exercising because the pain is too severe and I have zero  energy, so I don't know about the lactic acid build up, but when I first started with this I thought thiswas the cause. Your posts have been very interesting as I have explored many of these things with my MD or on my own.I appreciate any opinions  as something  may  help.  I will look into the gtt.

[Blessedsoulforever]

Hi,
Do a glucose tolerence test(GTT) ,it will help in arriving at a diagnosis.Meet a neurophysician if the problem persists.Simple accumulation of lactic acid due to the working of muscles can cause pain.Take vitamin d supplemented with calcium it has proved to help a few patients with your symptoms.

[dancingmom]

I am a RN and have tested my blood sugars on my own. They are always within normal range although I often feel like I get hypoglycemic if I do not eat. I develop all of the classic symptoms of hypoglycemia, but when I check my blood sugar when I feel like this it is fine. I had also thought that maybe  I was diabetic. I have no family history of this or of any leg pain. I do have one uncle with MS. I have seen an eye specialist who has not seen anything wrong with my eyes so far, but I have a folllow up appointment with him this month.

[Blessedsoulforever]

Hi,
That was a comprehensine history.great!History of the illness is the most essential  information for the diagnosis and treatment there on.Have you checked your blood sugar/urine sugar levels?
I somehow feel that it is diabetic neuropathy with diabetic retinopathy(?) .If there is a family history of diabetes then it is even more likely that you are suffering due to it.
Consult a neuroopthalmologist to rule out neuro involvement of youe eye symptoms.
Consult a Diabetologist immediately.
Goodluck.