I am curious

[mamaoftwo]

Since the "Is this ALS?" section was created, does anyone follow or know what has happened to all those who were concerned and posted originally but havent posted since.
I PM'd JenniLee to find out what happened to her at Col because she hadnt posted. She replied and then the next day, she did, to tell you all she had had her final diagnosis. I wonder what has happened to all the others. Anyone know. I know I am new to the forum so I am not familiar with everyone yet but I'm curious to know how the others are doing?

[vmd]

I remember a poster named Zac, who had issue with tongue atrophy. I don't know if he has posted recently.

[mamaoftwo]

there was also someone I think called Nicole. A young mother with kids. Probably many more.
I was just thinking about it because I don't think anyone had reached out to Jen (maybe I am wrong) and I wonder how many others are in the same boat.

[CindyM]

A few people had BFS, and therefore have been lucky and moved on. I worry about Conrad, too. Conrad if you are reading this say hello!:-D

The person I most would like to connect with again is Patty. She is the caregiver for a husband with ALS. Patty- you don't respond to our emails and PM's. I know something is wrong. If anybody knows what is going on please let us know! Cindy

[Midnight]

Hi there,
I'd love some input from some of you. I went to a neurologist Monday because of what I called "random muscle twitching" and leg pain and he told me that I probably had a virus and to come back in two months if they didn't go away. Obviously, is a hard thing to ignore when your body is in constant motion..although not painful, it is extremely annoying. I didn't want to be a hypocondriac, and it is embarassing to keep bringing up to my husband, but again, when your body is in constant motion, it is difficult to ignore. So, the double edge sword "google"....muscle twitching....I was fine with the idea that muscle twitches could be caused by anxiety until I read that anxiety muscle twitches were usually in your eye/hand. Mine are not.

These are my symptoms:

A couple months ago I noticed fluttering under my watch -now I realize they were muscles going off.

Muscles in my rib cage area, forearm, upper arm, lower leg, butt cheek, colon area, stomach area randomly twitching. Sometimes more than once (like fluttering), sometimes they go off one after the other, but it is 24/7 now. I took muscle relaxers a couple nights ago....it did nothing.

Leg pain in right leg ongoing for almost a year. Hypersensitivity in leg. Foot has hurt on that side. I went to the foot doctor and got 3 cortozone shots over this past year because it hurt and the Poditrist thought maybe I had planter faciatias (not sure if that is spelled right). It never helped. I had orthodics made. I usually walk with a very slight limp now although I still am a fairly active person, it is easier to limp, especially if I am tired. Toe on that foot always points up when my shoe is on. Not sure if that is a balance issue or what.

Fell down the stairs this morning.

Occasional problems with speech for the past year, to the point that my husand and daughter have actually teased me. I know what I am saying, my tongue doesn't get them out right. Recently have a difficult time swallowing my vitamins.

Hickups -painful ones many times last couple months. (?) no clue?

My legs are retaining a little water (I am not pregnant). (?) no clue either?

I feel shaky and I am not sure if it is because of my muscles twitching, but I definitely feel shaky and weaker, even though I am still working out.

Should I go back to the neurologist or am I crazy and I am just a healthy insane person with a tick?

It is so hard because I work with cancer patients....and that is so concrete...so I feel like a fool even being on a "forum" when I should be doing my work, but I am so preoccupied with this right now.

Sincerely,
33 year old crazy lady

[jimercat]

Midnight,

What kind of tests did the neuro run? Any? Did you go to an ALS clinic? You say your speech is affected, how exactly?

There usually is not pain with the onset of ALS and that could be totally unrelated.

If you are experiencing weakness that would be a concern. Have you noticed any artophy?

[patricia1]

Hi If I were you I would go to a ALS specialist Your symptoms are concerning Do you have weakness or atrophy you need MRI EMG and blood test Which they will order for you I wish you luck Pat

[Midnight]

Thank you so much for responding...

The neuro ran no tests. He literally told me I probably had a virus and to come back in two months if it didn't go away. That was it. The speech has been a subtle issue going on for a while... just (for lack of a better way to describe) words where I have been mid- sentence talking and I almost miss the words and they end up slightly garbled or blended, or kind of skipped because my tongue cannot pronouce them for a moment. Hard to explain, but going on for at least a year. It is slightly embarassing at times when you are trying to hold an intelligent conversation and you cannot pronounce something and you sound like an idiot.

It is hard because I was reading in the forum about atrophy, and I am not real clear on what atrophy looks like. I have noticed that I have lost some weight about 20 lbs in the last year and I was thinking it was hopefuly because of my body just getting on track after being done having kids (my oldest now 15, my youngest now 3) and my muscles are more defined) even though my I haven't been "lifting" weights in my arms, so it is very hard to say.

Is a EMG a fairly definitive test?
Does it matter what neurologist runs this test or is it important to go to a ALS specialist?

What are peoples twitches typically like?

Thanks again

[patricia1]

The EMG should be run by someone familiar with ALS. Twitching is to me almost like when I was pregnant and the baby kicked me .That how mine feels under my skin.like a tiny kick. in different places. some are like worms under my skin and some are like pops they are all different. Atrophy is a smaller look or a dent in the area effected. My hands are flat and my calfs have dents when I stand on my toes.also some parts of my body feel like soft marshmellows I hope that helps God bless Pat

[Jamiet]

Midnight,

Your symptoms are concerning, you need to get to a clinic that specalizes in neuromusclular issues (ALS clinic are the best and have the most qualified neuros).

You may also want to get tested for lyme, with the swelling and waterretention, is a symptom of lyme, not usually ALS until it's late in the disease. There are exceptions to everything.

Of particular interest, you said yoru left leg was "hypersensitive", do you mean your reflexes are pretty strong or hyperactive?

The fact that your toes want to point up....did that neuroolgist "scrape" the bottom of your feet? Do they hurt? This could be a sign of long "tract" changes.

Also, your weight loss is concerning, that is not normal. Do your shoes fit properly? Does you tongue have "teeth" marks on the sides and is the center line straight or crooked when you stick it out?

Do you see any asymmetries in your limbs / face?

YOu need to call a clinic. The MDA website will show one close to you, look in the MDA ALS division website. Also, if you give us yoru location, someone here will know one close. All you have to do is call the clinic tell them what's going on, they will see you.

There are thousands of things that can cause this. i would demand an EMG.

On BTW, your local neuros are usually no good and don't have a clue if your issues can't be seen on an MRI.....most of us here know alot more than most of your local neuros.

Please ask all the questions you want, we will help where possible.

We are all very familiar with everything you are saying, you are not crazy.

Rgds,

Jamie

[Midnight]

The twitching is exactly like when I was pregnant and the baby was kicking me when it is in my colon area. In fact, that is what I told my husband. When it is under my watch it is like worms under my skin or a fluttering. My right leg has been hurting off and on for over a year. It is almost like when you have the flu and your skin is sensitive, but that leg does not function as well as the other. I just stuck out my tongue and it points to the left, there are indents that I imagine must be caused from my teeth on the edges. Is this what you are referring to? It does not have a line down the center but does not seem straight, more pointed to one side.

I actually do have slight asymmetries in my face, and was EXTREMLY offended that my brother pointed it out a few months ago (you know how brothers can be), but I attributed it to having my lips injected with a filler and it being put in on one side maybe slightly more than the other (now you know my vain secrets), but I kept smiling yesterday and noticing that I had to work to make my smile and face seem the same on both sides. I keep telling myself I am imagining things.

What is a tract change?

I will look for a local clinic for nothing else than to shut my brain down for awhile. Thank you so much for your kindness. Hopefully it is just nothing and I can find someone to run a few tests and send me on my way. You are wonderful and kind people.

[jimercat]

LOL! These doctors, don't ya just love em???

You can bet your a#% that if they had your symptoms they would not let their fellow doc dismiss them with a "virus" and "come back in two months!"

I hope you are near a major city that has an ALS Clinic. Most neuros like everyone has said don't know jack about ALS.

Please let us know how your are doing and if and when you get to see an ALS specialist.

[Jamiet]

Where are you located, you need to go to a large, specalized facility, most likely a teaching facility / university.

[Midnight]

I am 1/2 way between Los Angeles and Santa Barbara, so I should be able to find somebody I am sure if I don't get lost on the freeway :-D

[jimercat]

Hey Midnight- you'd think those left coast docs would be more compassionate! :mrgreen:

[CindyM]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[vantec]

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]

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]

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]

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]

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

[CindyM]

Hi Conrad. Welcome back but sorry things are worse. I hope they solve the breathing thing soon. Interesting that you feel hot at times. I am 60 years old and thought my hot flashes would be done by now since I had a complete hysteractomy 10 years ago.

[ltr]

Conrad - have you ever been tested for sarcoid. I don't know a lot about it, but some of your symptoms sound the same. Maybe if you google it, that will help. Glad to hear from you. ~Leslie

[Midnight]

You all are the best...

I found a local MDA/ALS clinic, but need a referral, so Friday I go to my local to get it.

A couple questions....

What is with the tongue? What is Lasagne tongue? Is it ALS/Lyme or neither? (is it normal to have the bite marks on the sides?).

I do definitelly have some breathing issues too and gagging issues too. They are minor, but noticable.

Hopefully it is just a virus...with 3 kids and so much to be around this earth for, it makes me sick, but I am shooting for an EMG as soon as I can get one.

Any more tests or advice recommendation?

You are all great :)

[mamaoftwo]

Hi Midnight

First of all, good luck getting your appointment and with your EMG.

To answer your questions:-

1. The tongue is lasagne like in appearance because it is kind of rippled from atrophy and fasiculations. When held at rest inside your mouth, it does a kind of mexican wave motion (if you know what I mean). I dont have that but I have seen it on film. My tongue quivers when I stick it out but I dont know how much of that if any is normal.
The scallop edge thing is because your tongue as thinned (atrophied) and your teeth leave indentations on the perimeter. Make sense?
Apparently and Jamie is our resident expert on this, noodle tongue can be found in ALS and in Lyme.

2. The breathing issues and gagging are most likely stress related - sorry to jump on that bandwagon but stress does affect breathing and you can develop some conditiion with stress that makes swallowing difficult. Cant recall what it is called.

If you are seeing someone at an ALS clinic, I think that they will check all of this.

[Midnight]

Samantha,
Are you diagnosed ALS now?
Jaime,
Did you get bit from a tic from hunting?

Every day is changing. It is crazy. My hands, legs, and spasms, continue. Now I get tremors in my hands at times when I am resting them on the computer edge. I am sitting watching my quad contract probably 60 times a minute as I am typing right now, then it stops a few seconds, and starts up again. Last night it was my face, colon, forearm. The day before it was my back flank myscle. I can definitely tell the pad on my left hand is thinner than the one on my right and it is sore and my hand ached yesterday all day, probably because it is the one that has been twitching so much. I keep bouncing between threads where people say there are benign twitches, but you know when you feel like something is wrong with you. This is so not normal. I don't care what any med student says. This is not normal. I hope to God I am phyching myself into it, but I sit here and look at my leg and know I am not. I am crazy, but not that crazy. I would like to think I am more like the crazy that rides on inner tubes behind boats too fast with kids -laughing with them as we crash, or goes on spur of the moment out of town trips, or puts on the funny wig at cancer camp to dress up, or makes up the crazy rap song at night with my kids (and I hate rap), or the only girl that know what steel leeder is or the person intelligent enough to buy and sell companies or start companies from scratch and sell them off not even knowing anything about that industry to begin with, not an idiot dreaming up symptoms or reading about them and suddenly having them... and I feel insane right now...seriously insane, or that I hope I am going insane so that at least if I am not sick so that then at least I could be the opposite...well and insane! Does that make any sense at all? See, I am crazy.

[mamaoftwo]

I can answer that - yes she has been diagnosed. I read it on another post.

[Midnight]

and are you dx?

[mamaoftwo]

no, not yet. So far 3 EMGs normal. Tons of other tests done. Results pending. Biopsy and spinal next. I am trying to prepare myself for the diagnosis. Easier said than done as I am sure you know...

[Midnight]

So is that a spinal tap?....Is that good that you have had normal EMG? Or is that bad because you have no idea what is wrong with you? I am so sorry..I see you are a mommy like me and know it is probably so scary to just know something is wrong. You probably want something concrete, but something you can take a pill to fix. I will cross my fingers that you will have something that will go away and you will be better soon.

[Midnight]

I have had nothing, not a single test, no bloodwork, nothing...in fact, i just got off of the phone with the neuro who is still sure it is a virus. It is a waste of my time. The office staff said they don't do EMG's unless it is for severe muscle weakness. If I were his daughter he'd be using his license to get me into UCLA today . I have an apointment with a GP tomorrow to hopefully get a referral to a MDA/ALS clinic.

[mamaoftwo]

Cant you insist upon it? I had the EMG done immediately I was sent to the neuromuscular clinic. Yes, spinal tap is next and muscle biopsy and probably a repeat EMG to see what changes there are since May. Its not the test results that take a long time but getting in to see the neuro again. It is always like a 3mth waiting list.
I am a mom - 2 little girls under 5! I am so fearful of their future and cant bear the idea of them watching me get more and more sick. I dont know why the neuro wants to do the spinal to be honest. They've already ruled out MS - I had MRI's of cx spine and brain plus VEP study. All normal. Perhaps my next EMG wont be normal and that will be the one that tells what is up. I dont know.

[Icanmanz]

I have had nothing, not a single test, no bloodwork, nothing...in fact, i just got off of the phone with the neuro who is still sure it is a virus. It is a waste of my time. The office staff said they don't do EMG's unless it is for severe muscle weakness. If I were his daughter he'd be using his license to get me into UCLA today . I have an apointment with a GP tomorrow to hopefully get a referral to a MDA/ALS clinic.

Midnight, so they told you it was a virus! That is so funny, because they told my son the same thing, and it turned out to be als later. I don't know what the deal is with these doctors, they wait until you are so far into the illness, and then BAM!!!!! My son is gone, and I will never ever know if they could have come up with something different. It makes me feel as if they are using these folks as guinea pigs. This is sick!!!

[Midnight]

Irma, Your son had als and now you have it? I looked at your profile and it said you have als? I am so sorry about your son. I cannot even imagine, it makes my heart break for you to even think about it as a mom.

I talked to the same "its a virus" neuro yesterday on the phone and I hate to be so negative about somebody in writing, so I won't use his name, but he is a piece of work. He had his office call me back and say that I should lower my current medication, Topomax, (I have been on it since the beginning of 2005) because now he is going to try to rule out everything possible that could be causing this. I doubt that is what is suddenly causing this, but obviously I hope it is, even though it is not on the "side effect list", so I'll give it a shot, hoping it will not land me with major migraines and in the hospital for dehydration on an IV again (that is why I have been on the medication in the first place). It doesn't sound smart to me, but what do you do?

Something also very interesting...my sister who is an attorney and ALWAYS gives me a very hard time about getting Botox came across some information that Botox actually puts on their website. There is a warning that states that patients with certain neuromuscular disorders such as ALS, myasthenia gravis or Lambert-Eaton syndrome may be at increased risk of serious side effects. I was actually sitting with her and we read that if you are prone to these disorders it can trigger the onset of them. This is pretty frightening. No pun intended....ok bad joke. Anyway, grasping at straws, and I am not a "sue" person anyway, but I just thought it intersting.

[mamaoftwo]

Midnight - cant you get another neuro? It doesnt really sound like he is listening to you. I had that. I had one very senior neuro at a reputable clinic tell me that I was "wasting his time", only to have the head neuro at another hospital one week later that he could clearly see there is something wrong with me. He listened and I have stayed with him ever since.
I think if you don't feel comfortable move on, asuming your insurance allows for that. Many of us have been through a few docs before we found the right one.
ps. you will find that there are a lot of people whose profile says "I have been diagnosed with ALS/MND". It is the default setting I think so unless you actively change it, that is what is reflected in your profile. Irma does not have ALS but her son did.

[ltr]

midnight - i read that about botox also. It is because it is botulism and botulism can cause many neuromuscular diseases. With MG and lambert's they actually test you for botulism as a cause. I was always wondering why someone would inject botulism into themselves anyway. Though, what we won't do to look better!! scary stuff.