Thread: my story
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Old 07-03-2008, 04:40 PM #1 (permalink)
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Default my story

well, I am not sure where to begin. I have had some minor things on and off for along time. Quickly-epstien barr virus at 20. That lasted for a year or so, there was no twitching, just tired and achey. Then 8 yrs ago mis-diagnoised with MS. I was having tingling and numbness, had MRI, came back with lesions. then had lumbar, ncv, etc. Went to specialist and he said lesions are not MS lesions, no MS. I had beenon birth control and when i stopped taking them all the symptoms went away.

Then , about 2-3 yrs ago out of blue my thigh muscles started to hurt and ache. Went to Neuro fearing that maybe i really did have MS. She redid the Mri and tests-all were negative for MS. And the leg thing lasted 3 weeks and went away, i thought maybe a bug. Then went on to play compete in tennis 3-4x a week and golf. very active with 2 young boys.(6 &4)
Then got pregnant with the 3rd, still played tennis untill month 4 when it strarted to hurt my back. Around month7 i got abnormally tired/weak-like cement. Felt short of breath and my breathing seemed hard to take. My left calf felt funny and ached-my DR said it is all due to varicose veins and the pregnancy. OK, i felt that way to. (even though i have been preg 2x before-this was sooo different, yes that can happen.)

After the c-section within a week i had got a flu shot so I would not get sick.(what a joke that turned out to be) then within weeks my feet(toes, ball of foot, heel) and ankle along with my hands (same feeling in both) started to ache really bad! After walking or just laying in bed. i felt it was related to pregnancy. Then i Got a UTI, then i ended so sick with an infection few people ever heard of; C_DIFF. in the colon. ended up in the hospital for 7 days. I was massive antibiotics (flagly & vancomycin) then i relapsed and was in the hosp. again for 7 days! and then i got pnuemonia & pluersey and was there agian for 7 days! we could not believe it! I had a new born girl and 2 boys at home!

During this whole time my legs felt like jello and the thigh was burning. not burning pain, but it felt hot, like a sunburn just on my thigh. My hands and feet still bothering me. I felt it was from being sick and the baby. BUT then the twitching started in my right hand under the pinkey, more of pull and release that you could see. it lasted for 2 weeks then it started everywhere! Just little one pulse feeling twitches, a few times there were big ones that i could see through my jeans-wierd. Mind you during this time in hosp. I had been seen by a gastro, rheumy, cardio, hemetologist (my wbc to low and alomst did a bone marrow biopsy, but they went up), pulmonary for pleursy. My liver enzymes have been elevated.(alt/ast) for 6 months.

So my rheumy told me to see a neuro. (he did tell me i have osteo arthritis, he checked for anklosing spodlitis because i tested positve for the gene and when i bent over my low spine did not stretch the way it should. he took x-ray of whole back and said no evidence of that) I saw the neuro and told him i was concerned about ALS. she did a ncv/emg and said no eviedence of als, just ulnar nerve irritation. oh, and he did a c-spine because of left sided weakness and my hand seemed slight atrophy in palm. it was fine just a slight buldging disc an c5 and c4.

in the meantime I was not getting better, infact i noticed that my feet had shrunk and my hands and wrist were smaller also. I then noticed that i had a dent in left ankle, the same one that was bugging me. it could of been there i dont know. my left thighis also smaller than the left. i have even lost wieght around my knees, i have never been able to do that, even when i was playing tennis. My voice got hoarse for no reason and i have that ball of phelm feeling in my throat. i can swallow fine. i did have tongue twitching for 2 days, i showed my husband and he saw.

If you are still with me,
I then went to the ALS ceritified clinic at the University and meet with asst professor of neurology who is there ALS DR (her dad died of ALS). She noted i had brisk reflexes (yikes) and my toes on that left side dont move up w/o big toe to help them. I can do tip toes and heels. she did a full ncv (she said no ulnar irritiion, i have somthing in the nerve that braches diffrent, 25% of people have that. and did the test different and got the response) she did a full emg on the leg bugging me and on the arm/hand that twitched and my back (pain) she said all normal, and does not even suspect ALS, maybe a mixed connective tissue. I have already seen a rheumy and i do not have lupus, fibro, or any of those things. She is ordering a lower spine MRI and will do a muscle biopsy.

i am just real nervouse because it does seem to get better, if it were autoimmune, i feel like the twiching and muscle jerking would not be happening. i can still golf-my feet/ankle and hands/wrist/forearms will be in aching pain later! and when i walk the course, my leg is really stiff and feels tight. CAN this feet and hand pain be because i have lost muscle in them and that is why they hurt? I have recently got on lexapro for the anxiety over this. it has helped the tight feeling in throat, but not the phelgm ball. and i dont cry every 10 minutes anymore. I have 3 kids under the age of 6 and i am sacred. I still have not played tennis because my legs feel like Jello or tight and the calf get tight and loose? My neoro will do anther emg, she said every 6months for 2 years. I guess i am concerned about the brisk reflexes wich are new to me. it is real bad above my knees. and the twitching and the fact that my arms and legs and rear end, oh and my face are all thinner than they have ever been! my arm or leg will somtimes just move like when you fall asleep but i am awake.

anyway, that is it. Sorry to be so long in the tooth about all this. it