15 years and no diagnosis!

[walkingbyfaith99]

Reposting this with more information.I have had "episodes" since I was about 16.My mother has had the same sporadic symptoms,though not to the degree as mine.
Episodes of weakness in my extremeties.I would have to use my good arm to move my other one around.Or I would be dragging my foot all day.Or both legs would be affected & I would not be able to walk.I also have minor episodes, where I might not be able to move my fingers,they sometimes curl up into my palm for several hours to a day.I may not be able to wiggle my toes or one side of my foot will be numb and I will trip. Minor ones happen several times a week and last 6-24 hrs,the major ones happen several times a year and last 24 hours or more & then the muscles involved are painfully stiff for about 24 hours.During the attack,I usually need help dressing,using the restroom,etc.After a week or so back to normal.Extreme cold/heat seem to trigger & lack or sleep or sickness.
Tests:
ER 2001-Worst attack up until then,could not walk.ran labs and potassium was 2.8,everything else normal.No treatment.resolved in 3 days.
PCP ran abs,thyroid,autoimmune,etc..normal,every 3 months.K usually around 3.0.
Lyme neg;mono;neg
Neurologist 2006 (not during attack,took 3 months to get appt)Did EMG,NCS-no abnormality lower leg
MRI of spine w/o dye (I did not make it through the other one because of claustrophobia)
Due to low-normal potassium,tentatively diagnosed Periodic Paralysis either hypo / normo kalemic.Refer for muscle biopsy at later date for confirmation.
Geneticist: Andersen Tawil-neg
May10- Neuro appt with MDA specialist.again,normal exam,because it took 3 mos.to get in .Looked at previous labs,said No to periodic paralysis,scheduled biopsy.Report states tissue was compromised,but otherwise shows normal muscle tissue.Dr.decides my mother and I both suffer from a psychological disorder based on a 4 year old EMG not done during weakness,a set of MRI images not completed & a muscle biopsy that was compromised.

[walkingbyfaith99]

I've been getting it checked for 15 years now and still no answers.

[marz816]

have you spoken to doctor it sound like the tendence are going into spam were everthing shut done get it checked

[walkingbyfaith99]

Family history of lupus,sclerderma,osteo and rheumatoid arthritis.

Otherwise in good health,physical and mental.I am not an attention seeker,I do not enjoy this condition.I dont like being dependent on others for help in the bathroom,etc..I am pretty intelligent and have researced this for 15 years ,I feel it is something muscle/nerve related.The hardest part of getting diagnosed,is getting testing during an episode,most speicalist cant see me for several months and then symptoms are gone.