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CindyM

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Hi Midnight- I hope you get and appointment soon and an ALS cllinci and I hope they offer good news. Pleae keep in touch. Cindy
 

myooshka

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virus

I was told doctor's say maybe a virus when they have no clue, cause that's what was getting told to me in beginning. Like my Dr. said if this is supposed to be a virus than what kind of virus is it?
 

Sammantha

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Oh my gosh i could cry right now, a long time ago i used to get twitching deep under where it felt like butterflies or when i was being kicked by my baby when i was pregnant. I even had a pelvic ultrasound done because i had super bad pain that would come on during my sleep and it felt just like back labor, it radiated from my back and into my groin area.... That coupled with the fluttery feeling prompted the test from my gynecologist.......! My twitching feels one of three ways now, a heartbeat, a flutter, or like a quick jiggle. My thighs had the most fluttery twitches, and the rest of my body gets very specefic twitches in the muscles. (Midnight,) if you can get to a neurologist who will give you an EMG, go as soon as possible........ I had every test on earth, and it was the EMG that revealed my problem.... Believe me your doc will have you run through every test their is before they will suspect anything like ALS..... I've had a colonoscopy, hand surgery, pelvic ultrasound, ct scan, and cervical MRI before they referred me to a neurologist................ Oh and what got me to a specialist was when i started having cramps in my legs and a weird feeling in my muscles plus weakness, my doc thought it was the effect of a virus, i saw him three months later and had wasting in that area and he sent me to a specialist ASAP... Do what you have to do to get a neurologist to perform an EMG... Best of luck,, Sammantha ps...Where i told my docs a year previous that i had muscle stiffness and weakness, was exactly where all the positive sharp waves and fibrillations showed up! Also it showed some abnormalities on the right side of my body! So if you know there is something wrong keep on it!
 

patricia1

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myooshka said:
I was told doctor's say maybe a virus when they have no clue, cause that's what was getting told to me in beginning. Like my Dr. said if this is supposed to be a virus than what kind of virus is it?
When a doctor says virus He has no clue what it is And a virus is a catch all.You need to see someone else Pat
 

vantec

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Hi Cindy and all my friends,

I've seen 3 Neurologists, 11 doctors in all, had all the blood work imaginable, a brain MRI, 4 EMGs, Cat-Scan and now they want to do an ultrasound. The reason I have not posted is I am in the most teribble pain, and even Percocet won't help. I am so weak that I can barely stand up now, my legs are so stiff, my back and arms are so weak, and my fingers are now starting to curl. I've lost over 50 pounds since this has all started over 1 year ago. Everyday is worse than the last, and I can't take it anymore. If I don't have ALS, I sure don't know what it can be, and neither do the doctors. I feel like the unluckiest person in the world.

One question for people with ALS. Do you feel hot all the time?

Conrad
 

patricia1

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What a shame I feel for you > What do they say you have .
Have you been seen lately
Have you gone to big city ALS clinic If not you should. How can they say they dont know what you have with all the symptoms and progression It gets me so mad. I am praying all the time. Good Luck Pat
 

Jamiet

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Conrad,

Have you considered seeing a lyme doctor or getting specalized lyme testing?

4 Normal EMG's point to some kind of infection process, esp. being hot all the time. Waht about chills? Chills usu. mean infection.
 

patricia1

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vantec said:
Hi Cindy and all my friends,

I've seen 3 Neurologists, 11 doctors in all, had all the blood work imaginable, a brain MRI, 4 EMGs, Cat-Scan and now they want to do an ultrasound. The reason I have not posted is I am in the most teribble pain, and even Percocet won't help. I am so weak that I can barely stand up now, my legs are so stiff, my back and arms are so weak, and my fingers are now starting to curl. I've lost over 50 pounds since this has all started over 1 year ago. Everyday is worse than the last, and I can't take it anymore. If I don't have ALS, I sure don't know what it can be, and neither do the doctors. I feel like the unluckiest person in the world.

One question for people with ALS. Do you feel hot all the time?

Conrad

My husband always says that alot of heat is coming off my body when I go near him in bed and if I sleep near him we wake up wet from sweat.I never had that before ALS I used to be cold all the time. I wonder what that is .
 

ucla2004

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myooshka said:
I was told doctor's say maybe a virus when they have no clue, cause that's what was getting told to me in beginning. Like my Dr. said if this is supposed to be a virus than what kind of virus is it?

Myooshka,

These symptoms are thought to be associated with an unidentified virus. Benign fasciculation syndrome is a term used for many of these symptoms that people experience with no evidence of muscle weakness or atrophy. It is believed in the medical community, but again no one knows why these symptoms come about. Please understand that doctors are limited with the information thus far. Since these symptoms are so common in the community we try to reassure and hope that it isn't anything more serious. We like to run blood tests, NCS and conduction studies to rule out motor neuron diseases. Hope this helps.
 

patricia1

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UCLA The way you talk you sound like a medical student Are You?
 

vantec

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Hi Pat,

Thanks for caring. As for what they say I have, they don't know yet. But my breathing capacity was measured, and it was below normal. I feel like I can't take a full breath, and take about 25 breaths a min., but I am not hyperventilating. They also measured nerve degeneration in my thigh muscle, but didn't make much of it.

Yes, I've seen a Neurologist at the Cleveland Clinic, which is rated 4th in the county for Neurology. But I was tested over 5 months ago, and things could have changed by now. They won't see me for 3 months, and will do nothing about my pain. I'm as mad as a wet hen, when these doctors won't do anything for you. Thanks for praying for me, heaven knows I pray 10 times a day.

Conrad
 

vantec

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Hi Jamiet,

I was tested for lyme, but not by the labs that can really detect lyme. No, I don't get the chills, but I did before this all started.
I don't think I have lyme, because it doesn't effect breathing.

Conrad
 

vantec

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patricia1 said:
My husband always says that alot of heat is coming off my body when I go near him in bed and if I sleep near him we wake up wet from sweat.I never had that before ALS I used to be cold all the time. I wonder what that is .

Hi patricia1,

I used to be cold all the time too. Is it possible that the muscle breakdown is causing the heat?

Conrad
 

patricia1

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vantec said:
Hi Pat,

Thanks for caring. As for what they say I have, they don't know yet. But my breathing capacity was measured, and it was below normal. I feel like I can't take a full breath, and take about 25 breaths a min., but I am not hyperventilating. They also measured nerve degeneration in my thigh muscle, but didn't make much of it.

Yes, I've seen a Neurologist at the Cleveland Clinic, which is rated 4th in the county for Neurology. But I was tested over 5 months ago, and things could have changed by now. They won't see me for 3 months, and will do nothing about my pain. I'm as mad as a wet hen, when these doctors won't do anything for you. Thanks for praying for me, heaven knows I pray 10 times a day.

Conrad
Conrad I think 25 breaths a min is almost like panting I would see a Lung Md .That sould be at 9 breaths a min,Thanks concerning. Take Care Pat
 

Jamiet

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lyme does cause breathing issues, "air hunger"....but you never know.

if they excluded everything else, it's worth a try..maybe a long shot, but, i've read some pretty interesting stories on lymenet.org. i have been talking to about 5 people who are just like me, same story...even what they called the "lasagne noodle" looking tongue, muscle wasting, bulbar symptoms, classic ALS symptoms and most of them are 90% bettter. I wouldn't believe it if i wouldn't be talking to them personnally, but, i've read their historical post and sure enough....you never know and DON'T give ok.....

I am going to get on ceftriaxone next week, its a strong IV treatment for lyme and it's also effective in ALS, so i will cover all basis.

i hope you get to feeling a little better, hang in there as best possible. I am in so much pain, i virtually live on pain meds, which i hate, life is not fun like this, but i make the most of it.

rgds,

Jamie
 
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