Old 07-03-2008, 04:40 PM #1 (permalink)
awieleba
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awieleba
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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
 
Old 07-03-2008, 05:03 PM #2 (permalink)
awieleba
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opps i also forgot (its seems with such a lenghty post that nothing could of been left out) but my face felt really funny for awhile-like a knot. it feels weak now, like i have smiling/laughing feeling even when i have not. my hands get tired when i hold the phone in my hand to long, but typing is fine. i feel tired and weak all over but my one leg feels tight and more stiff. and my sole of feet hurt. my palms are so thin! and they ache. i really idenitfy with all that "planning guy" feels. I am sure there is more but i dont want to bore you all anymore. it is hard when so much is going on! well I am going to have a drink on the patio with my wonderful hubby and forgot for tonight that i have any problems at all! I am sure you all can relate to that!
a glass of wine makes it all better!
 
Old 07-03-2008, 05:04 PM #3 (permalink)
PDaddy
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PDaddy
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Cool

... or a Martini! ...
 
Old 07-03-2008, 07:35 PM #4 (permalink)
awieleba
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awieleba
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Default would appreciate input, I am hearing crickets out there!

OK I am new around here, but would appreciate input.

I am hearing crickets out there! I'll try not to take it personally!

I guess i would like all your opinion's on my story (wow, I sound needy!)
can ALS start this way? Did anyone who has this start with the aches and pains in the feet, hands and knee? And have thinning limbs? my family thinks no big deal, it may be becuase i lost 35 pounds from the colon problem i had while laying in and out of hosp.?but my body has changed and with the twitch (they are now in elbow) and limb jerking with brisk reflexes. i am worried.

also, my fingers do feel weak when doing things but more of a pain kinda feeling.

thanks for listening to me droan on and on, i think that i am sick of myself, i am suppose to be on the patio with hubby! he is not happy i am on here! so better go! and for anyone who has read anything i posted to others-i am not advocating lexapro! it just helped me calm down a bit about all this!
 
Old 07-03-2008, 08:07 PM #5 (permalink)
fiddleplayer51
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awieleba,
I really feel for you. You've had so many varying medical problems over the years. I'm sure that makes it all the more easy to imagine that you may have yet another serious medical issue.
When will the next EMG be done? Can you move the date up and have it sooner? You need peace of mind and it sounds as if you won't be able to achieve that with this constant worrying over your symptoms. I hate to think of your hubby getting impatient with you over all of this and your family dynamics being jeopardized. You're going to wear yourself out with worry and caring for your children.
My advice to you is schedule a more extensive EMG soon and take it from there.
I'm so sorry you're going through all this right now and that you can't just enjoy your life.
I wish you the best. Take care, awieleba.
Jane
 
Old 07-03-2008, 08:25 PM #6 (permalink)
awieleba
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Smile

you are so nice Jane! I just had the emg May 31st and she will do the next one in november. I have been worried, but believe it or not I am doing alot better than I was 2 months ago. I got a cleaner for my house so I can just be with my adorable 3 kids and not worry about cleaning and laundry---just play and go to pool. At the pool, when I hold my 7 month old my arms shake, very wierd. but I do have a loving husband who does feel there may be somthing going, just doesnt want to focus on it. I do agree, i think that i am trying to get it all out today because it took me soooo long to finally post and i am ready to go. I have just read everybody's post's and felt like finally doing it.
everyone here is such an inspiration, that in the face of all this, are so postive. The postive outlook on this site is what has helped me over the past few months!
 
Old 07-03-2008, 08:36 PM #7 (permalink)
happy
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I am totally with you. I have had almost every single symptom known to mankind. It;s weird, cuz they all are so real. however, the main thing for me is....I can still walk, talk and have function of my hands. I can still exercise and move. My limbs are not stuck in any one position and I can swallow and eat just fine. Most of the real ALS stories here are not so fortunate. I think that once the really bad stuff starts to happen it does not get better. Granted, my calves twitch and are smaller than they used to be..but, I can still walk and workout. I was where you are a few months ago and still continue to vasilate back and forth occasionally. My advise, dont; dwell on it. I was amazed that when i started to go out and live my life again my symptoms got alot milder. I felt better and more able to conquer what i was experiencing. Good luck

Robin
 
Old 07-03-2008, 08:38 PM #8 (permalink)
wright
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Hey there

It sure sounds like you've been through a lot. What I think you need to hold onto at the moment, is the EMG and clinical evaluation done by an ALS specialist. If you claim to have atrophy in your leg (a lower motor neuron sign) and it was EMG'd and the EMG was clean, then that is a very good sign. You said that you lost 35 pounds, which is a lot of weight. Is the atrophy just in one leg or both? Is it also in both arms? If so, then it's most likely due to the loss of weight.

Brisk reflexes don't always mean something bad (people can develop brisk reflexes during times of anxiety, for example). Once again, your body has been through a lot, so that trauma can cause all types of problems.

You also say there is a query of an autoimmune disorder. That could certainly cause the symptoms you are having and can linger for quite some time.

I certainly wouldn't be jumping to any conclusions, especially something like ALS. When you start to go down that path, please remind yourself that you were seen by an ALS specialist and were told that it isn't even a consideration.

Hang in there and lean on us if you feel the need.
 
Old 07-03-2008, 08:42 PM #9 (permalink)
awieleba
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thanks robin!
In my post it says the symptoms get better, i meant that it is NOT getting better, and if it was my immune system then you would think that it would wax and wane and get better. BUT i am with you about the fact that i can still move around. I have not worked out or played tennis due to perceived weakness. I am going to try to play with husband. He said, lets try and see what you can do, if you fall-you fall. so i will try. I just dont want to make anything worse? I fear my leg will give out on me! thanks for responding!
 
Old 07-03-2008, 08:52 PM #10 (permalink)
awieleba
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Default to wright

I lost 35 pounds because i had just had a baby and the wieght was there to lose! after i leveled off and the colon did to, i lost 10 of that pounds rapidly. even in my face and nose! the atophy is only in the left ankle, a dent. the neuro saw it, and the thigh is slightly thinner than other. Again, my hands have thinned out and seem flat, but not like the atrophy photos that I have seen online. (not yet) I know that I have been to an als clinic, but i hear so many stories that people had this for years before it showed up an emg! I dont discount what the neuro says, but, untill the emg is different what else would she say? well, thanks for looking at my post!
 
Old 07-04-2008, 12:27 AM #11 (permalink)
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Those people that have had "clean" EMG's and then "dirty" ones had upper motor neuron symptoms or had PLS (PLS is a variant of ALS that only affects the upper motor neurons) that developed into ALS later (ALS is due to both upper motor neuron and lower motor neuron death). Upper motor neuron death will not show-up on an EMG and can only be diagnosed with a clinical exam. The symptoms you are stating (e.g. muscle atrophy) are lower motor neuron symptoms; if you truly have muscle atrophy and it was due to ALS, then you would have denervation and that would show-up on an EMG.
 
Old 07-04-2008, 08:31 AM #12 (permalink)
awieleba
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Default wright

thank you for the reply. I really appreciate any and all input. I do feel that i am at the right clinic and should stay the course with my neuro. And like alot of other people here say, dont worry now, if it is ALS, there will be time to worry then. Your input about the emg has helped ease the worry alittle, so for that i thank you. no one knows where things will go (expect GOD)but it nice to have this spot to come. I will post my symptoms and tests as I go through this. If it is infact some neuromuscular disease, I am in the right place for support and if it is not, then maybe it will be of some comfort to the others out there that feel and fear the worst as I do. My symptoms have been going for about 6 months--that i noticed. Untill the twitching or slight atrophy (was it always there? myabe or maybe not) i dont think that anybody really looks close at everything!
maybe in the next posts i will bring out my dry sense of humor as it has not shown through yet!
 
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