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(reply to Cary Cook BSN RN)

dear Cary Cook !
thanks a lot for your interesting for my case (deep from my heart,still is not broken because i am huge fighter,but sometimes you come in front of wall in your life, and then trying to find out how to pass or jump over)
unfortunatelly my homelanguage is not english (i apologize in advance for some mistakes in writing,so i will try to give my best answer).doctors are sure i cleared infection and told me to forget infection and sepsis because that is behind me.first i used neurontin for my neuropatic pain,but doctors neurologists rapidly increased doses of drug (they said for this kind of chronic pain can be max. dose 3600 mg of neurontin.now i am using LYRICA for 8 months to stop pain ,it's helping a bit better than neurontin,but i have huge weakness of whole body and lot of sideeffects.and i am wondering is it from LYRICA (have muscle spasms also,pain in my neck)?i am not able to walk properly and get through the day,and have problem with balance also.they done EMNG of my legs and hands also few times,and i pass through detailed neurology hospital treatment (all can be done in my country,as you seen they done genetic search to the hereditary neuropathy Charcot Marie TOOTH-CMT1A/HNPP ).so that is still enigma because doctors said that test cover 80% of possibility of CHARCOT),i am wondering how to exclude rest 20%(no one in my family has CHARCOT,,mother has some weakness constantly and that is for me suspicious to be honest but doctors seen her during i was in hospital and said she is ok,she is 60 yrs ols and whole day working around with any problems.as well i have folliculitiss decalvans and also i had extensive hospital (best dermatology clinic in state) processing for this problem and doctors not found reason for this (they even not found staphylococcus aureus which cause this).now one more factor in my blood test is constantly big.that is IgE---it is between 750 and 900 constantly(one enigma more,i'done alergic tests and rheumatoid tests--all negative).i 've done new MRI (neck and lumbar part) 2 months ago and it's good.also i've done new EMNG.
so now i will answer on the part where you me asking for my biggest problem.sorry but there are more problems.
1 i have huge weakness of my muscles (i can not carry my body)
2 problem with balance (weakness in foot and joints)
3 i am limited with walking because i have pes escavatus of both foots and spasms of foots (i bought various orthopedic insoles,but not helping a lot,and MBT shoes)
4pain in whole bonds,specially in joints,biggest pain in foot joint
5neck weakness
6as well weakness of my hands and shoulders and back
so if you have some advice for more hospital researches,or if you can conclude something from this story considering your experience please let me know (i would be very grateful).also i can write my EMNG results and MRI analasyis if is necessary and all details you need.to be honnest i am scared of some neuromuscular disease !!
best regards and once more many thanks dear Cary

July 22, 2010 - 4:19pm


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