Opinons of my symtoms?. Possible als/mnd

[JESSICAROD]

just needing some opinions from the best source i could think of possible, i have not googled ALS/MND untill after all testing for MS has came back negative, i have had MRI brain LP and MRI spine
Drs now do not know what is wrong with me here are my symtoms

1 7months ago twitching start's and progressivly worst ( every hour mainly legs ,but happens in face also) (more so when relaxing
2 weak feeling startd the begingng of this year followd with back spams which the back spams come and go not all the time i also have had a few charlie horses but everyone gets those
3 tremour has gotton worst since beginng of this year say when holding something a cup of coffee, books while laying down and reading, sitting reading a magazine
4.weakness/and balance i can not stand on my toes any more without falling over my balance seems to be off has been for w few months now but i never paid attention untill worsting of symtoms,
5 when i do light yoga i shake very badly you can see this but its more internal very very hard to explain or say when you sit on the couch and do leg lifts i hold it and it just shakes.soo badly Dr stated i had brink reflexs,
6when you boune your leg up and down i will hold it, it shakes when i hold it to stop this never goes away, its the new everyday me
7 i have been tested for, MS, DIABETIES, ALL HEART DIEASES, LYMES, MONO, FLU, CBC COUNT,VIRUS, because iam young drs are blowing me off ,but being yound does not mean anything there are many youngsters who have this "unlikely" yes, but true
8could this be BEGINING signs of ALS/MND?.. wont get worst untill years later...
thanks yall for time and input. hope i explaind well.

 

[kmendsley]

1. Have you seen a neuro or only your gp doc.?
2. Have you had a spinal tap?
3. Have you been checked for thyroid disorder, all viatamin deficiencies, and potassium check?
4. Does the doc. say you have clinical signs of weakness..or just you?

In summary..if your doctor was really worried he/she would have already sent request for a neurologist. If not ask for one. There are still many many other diagnosis and other tests to be done before you consider ALS.

 

[trfogey]

1 7months ago twitching start's and progressivly worst ( every hour mainly legs ,but happens in face also) (more so when relaxing

Twitching is not a symptom of ALS. Everybody twitches -- some more than others. The twitching that goes along with ALS is accompanied by other things which are far more important for diagnostic purposes than twitching is.

2 weak feeling startd the begingng of this year followd with back spams which the back spams come and go not all the time i also have had a few charlie horses but everyone gets those

If you have ALS, you don't feel weak -- you are weak. You get worse and you never get better.

3 tremour has gotton worst since beginng of this year say when holding something a cup of coffee, books while laying down and reading, sitting reading a magazine
4.weakness/and balance i can not stand on my toes any more without falling over my balance seems to be off has been for w few months now but i never paid attention untill worsting of symtoms,
5 when i do light yoga i shake very badly you can see this but its more internal very very hard to explain or say when you sit on the couch and do leg lifts i hold it and it just shakes.soo badly Dr stated i had brink reflexs,

The type of tremor you describe does not go along with ALS.

Reduced muscular stamina and exercise intolerance are what you are describing here and they are not symptoms of ALS. Brisk reflexes are not uncommon in young people. The fact that this has been going on for several months and you don't have paralyzed body parts, especially where your symptoms started, points away from ALS as the cause of your problem.

6when you boune your leg up and down i will hold it, it shakes when i hold it to stop this never goes away, its the new everyday me

I have no idea what you are talking about here, so I can't comment one way or the other.

7 i have been tested for, MS, DIABETIES, ALL HEART DIEASES, LYMES, MONO, FLU, CBC COUNT,VIRUS, because iam young drs are blowing me off ,but being yound does not mean anything there are many youngsters who have this "unlikely" yes, but true
8could this be BEGINING signs of ALS/MND?.. wont get worst untill years later...

Clear one mistaken thought from your mind about ALS right now. If your symptoms were really ALS, don't expect to be alive "years" later, much less relatively unaffected by it for years. It's not like getting gray hair. ALS is progressive and it is relentless. It cripples in months and kills in just a few (2-5) years. Unless you're one of the unlucky ones who are crippled in weeks and dead in months.

And there are not many youngsters that have ALS. There are a few and most of them have the inherited type. They get crippled and die at the same rate as us older people.

No, in my opinion, what you have listed here are not the beginning signs of ALS/MND.

Good luck to you.

 

[munecagirl22]

symtoms sound famailar but i haeve no clue iam in diagnosed stage myself

 

[JESSICAROD]

Thank-you for fast reply's
this twitching started about 6 months ago (aug-dec can not remeber exact) i never thougt anything what so ever about this then in Jan i statrd having spasams in toes and low back twisting spasams, those seem to come and go which i still blew all things off untill my mouth startd twitching while smileing, then few days later i got hit w a weakness in my body noone could describe i didnt want to even get up bc the feeling was terrible i was shaking when doing things and had such a odd feeling.
Its been 3 and half months since all of these things have happend and the twitching has gotton worst not better,worst upon relaxing as stated.
Its not MS as i was sure i had it all MRIS and SPINAL tap has been clear, yet my symtoms are still here with me the only thing that bothers me is the weakness feeling i have and being such off balance all i do is turn and i seem to fall over and i have a buzzzing feeling in my body.. maybe that part isnt so and its just the weakness i feel.. it never goes away.
This seems as if its a time game which is unfortuante.. even if its ALS or NOT, i will be living with this feeling worried untill i find a cause my Neuro stated if it is ALS there isnt anything you can even do about it, well this i know ,but i would like TO KNOW what IT IS if NOT then i go start another road
I will be going to neuro in a couple and i was have to DEMAND a EMG he is very werid thinks iam crazy ,BUT oh know iam not
i have been put on depressions meds, seen theripast, and anixity meds twice a day all they do is put me asleep
they are not getting to the "physical" part of my issues
I have read on several postings as i have been searching for a while now before i posetd to make sure sure i knew if my symtoms matchd i have seen one /several that did have the feeling iam describing before the inital DX, I have also seen several WHO HAVE the DX and al they are dealing with now is balance issues and thats all, and i have also read postings of people haveing caprel tunnel symdryme w 3-4 surgeries and they did not help, come to find out YEARS later, it was ONSET of ALS/MND they have a veryyyy slow progressing kind, but no the less is ALS/MND
I repect everyones answers. Iam just scared, I have been tested for everything under the moon it does seem and so many testings, every vitamin test, Lyme, extensive THROID testing , IT ALL comes back normal...

 

[Zaphoon]

Jessi,

I feel sorry for you. You are on anti-anxiety medication for a reason, this is obvious. Anxiety feeds on itself, if permitted, making things worse. You are feeding your anxiety unnecessarily so and for this reason, I feel sorry for you.

I would suggest dropping the whole ALS issue for PNS, a substitute many of us have agreed upon in the past. It is every bit as convincing as ALS but without the debilitating harm. With PNS, you can have any and all symptoms imaginable and be comforted with the fact that you have some kind of medical condition. You can also self-diagnose yourself with PNS, thereby saving you a lot of time and money. The medical professionals will also be spared the time and testing on you.

PNS can be as mild or severe as you wish. Why not opt for it?

PNS was introduced in a former thread entitled, "I Have PNS" and portions of it have been copied and pasted for your perusal directly below.

"A few of us on this forum have decided that thinking about, dwelling on and self-diagnosis of ALS has proven in the past to be not all that palletable. In fact, it has brought many of us to high anxiety.

Through all of our research, we have found room for a new category to go along with or compliment ALS and all of the other neuro-degenerative diseases/disorders and syndromes: PNS.

The greatest feature of PNS is that any and all symptoms may represent or mimmick it. It is non-life threatening and most easily treated when ignored. Oh, you say, it won't fit my case! Well, just try and see. Here are some of the more common symptoms associated with PNS:

- Twitching (the more sophisticated folk refer to this as "fasciculations)

- Perceived Atrophy (possible dents, dimples, etc.) especially but not limitted to: tongues, legs, arms,
fingers, etc...

- Pins and needles sensations, burning sensations or any other sensations

- Fainting or dizziness or the thought you may have become dizzy

- Excessive yawning, yawning or the attempt to yawn with the inability to do so

- Weakness (especially in but not limitted to: tongue, jaw, arms, legs, fingers, toes, etc

- Breathing easily, not so easily or not at all (don't try it for very long)

- Hysteria (this is one of the biggies! - dead give-away you've got it!)

- The need to continually google symptoms for stuff like PNS

How is PNS diagnosed?

- Very simply by choice through self-diagnosis. If you want it, you can have it!


What kind of medication/treatment is there for PNS?

- You may take two asprin, tylenol or *mydol (*ladies only, please)

- Any other treatment is not allowed until officially diagnosed by a licensed, practicing physician."

So, why not opt for PNS?

 

[JESSICAROD]

THANK-YOU
well iam for sure 100% i DO NOT have anxiety. I have never had any issues with depression Iam a person who is activ always on the go and live next to my very best friend i do not work nor do I have to so no extras stress an areas of my life have always been a pretty healty yound lady in late twenties (except for some fertlilty issues).
I have a wonderful non selfush husband and group of friends, i DO KNOW my body a diam very well aware that there is something going on.
Iam still myself leaning towrds MS, but since drs wont give me this diagnosed for clear testing, then the would be the next since ALL other testing comes back ok normal, like i said i have read several postings of people who have had same issues and yes years later come to find out they have ALS, even a lady on the MS site was diagnosed w ms now they are diagnoseding her with ALS, and she had MS YRS AGO, she now within 3 moths is in wheelchair cant type much
There is always the possibility, but i will take everones word, maybe this does not seem like als/mnd possibly it isnt
but for one thing THERE IS SOMETHING WRONG... very wrong.. and its scarey.. thanks for listening and postings

 

[Zaphoon]

My apologies for misconstruing you with someone on anti-anxiety meds.

Why not think of this as a possible pinched nerve before considering ALS?

 

[JESSICAROD]

hey there
haha its ok iam sure many people on here may think i have anxiety like my dr well 1st because iam young, and really he has no other ideas since blood test MRIS came back normal, and i have the SPINE mri also which statd i didnt have a pinched nevre or no herniated back disc or injuries as to also what was causing my back spasms once in a while, i do notice when my back spamas i feel a lot worst in my legs
They feel as if, they are tired not that i CAN NOT walk ,but just tired weak feeling, only way to describe this odd feeling

and ofcouse i have the hand tremour when using them as i statd in my 1st postings. I only took the anxiety meds too see if they would honestly work help me feel somewhat better and they havent done anything just make me sleepy and crosseyed.
I hope this isnt ALS/MND.. o any other horrid diease PPMS/PARKINSONS.. i have a bd feeling tho..i do know its something going on

I have also been tested for mono and other virus which are all ok, leg feeling is a constant everyday thing.. Time looks like the only best bet i have right now... this is just so frusterating..and SCAREY....

 

[trfogey]

I have read on several postings as i have been searching for a while now before i posetd to make sure sure i knew if my symtoms matchd i have seen one /several that did have the feeling iam describing before the inital ALS diagnosis, I have also seen several WHO HAVE the ALS diagnosis and al they are dealing with now is balance issues and thats all, and i have also read postings of people haveing caprel tunnel symdryme w 3-4 surgeries and they did not help, come to find out YEARS later, it was ONSET of ALS/MND they have a veryyyy slow progressing kind, but no the less is ALS/MND
I repect everyones answers. Iam just scared, I have been tested for everything under the moon it does seem and so many testings, every vitamin test, Lyme, extensive THROID testing , IT ALL comes back normal...

JESSICAROD,

All of those people with ALS that you've been reading about have something you don't -- the actual disease, ALS. When they went to the doctor, they didn't have normal tests. They had noticeably abnormal tests -- tests that were so abnormal that the doctors ordered more tests. Some of those tests came out normal and others didn't. That's what distinguishes ALS from other diseases that have similar symptoms. We pass certain tests and we fail certain tests, and we don't have everything come back normal, like you.

And, if all that they complained about in a particular post is a balance issue, it doesn't mean that they aren't dealing with a lot of other issues also. They simply chose to focus on their balance issues in that post. A balance issue likely caused by ALS in a person who does not have normal results on the doctors' tests -- so they are very different from you.

Next, people with ALS get all the same problems that people who don't have ALS get. We get colds and headaches and hangnails and heart disease just like people who don't have ALS do. Don't make the mistake of believing that everything that happens to a PALS is caused by ALS. If it isn't directly a result of muscles becoming paralyzed, it isn't caused by ALS.

And, finally, I mentioned this to you in my previous post, but you seem to be ignoring it, so I'll say it again. There is no "YEARS later" prognosis with ALS. Let me repeat that in emphasized print so it sticks in your delusional brain: THERE IS NO "YEARS later" PROGNOSIS WITH ALS!

Once we are diagnosed with ALS, we measure our expected lifespan in months, not years, and the clock started when the symptoms started, not 6 months to a year or more later when we got the diagnosis. 10 percent don't make it a year (12 months). Nearly two-thirds won't make it to three years (36 months). 80 percent will be gone at the four year mark (48 months), 90 percent by the six year mark (72 months), and 98 percent by the eight year mark (108 months). And, by "gone", I mean DEAD -- they would all be severely crippled long before that point, unable to walk, talk and feed themselves.

Don't insult us with your "But I read this online... " horse manure and fantasizing that you are so misunderstood and you really are an exception to the rules. We live with this stuff every day. Go get the attention you so obviously need somewhere else. We don't have time to play dress-up games with silly children.

Because our clock really is ticking, and yours isn't.

 

[JESSICAROD]

YES,
I do understand you I seem to have upset you in some way i do apologize for this, what each in every one of you are dealing with, is unimagineable, from what my neuro stated to me was when the MRIS and what come back its NOT MS, and w ALS/MND the MRIS always show up clean..
I will be going to my neuro hopefully before the end of the month is out i will be traveling 4 months, i sure hope your right in everything that you say, but i wont believe anything untill i get the EMG testing and thats in the clear.. i dont know rather my time is ticking or not there are other horrid dieases out there.. most autoimmune are .. ppms, parkinsos, MD, many many many more , i will keep everyone informs
possible more questions, if anyone dont mind putting up w me
thanks again everyone my prayers are with you all,, In JESUS NAME

 

[notme]

YES,
I do understand you I seem to have upset you in some way i do apologize for this, what each in every one of you are dealing with, is unimagineable, from what my neuro stated to me was when the MRIS and what come back its NOT MS, and w ALS/MND the MRIS always show up clean..
I will be going to my neuro hopefully before the end of the month is out i will be traveling 4 months, i sure hope your right in everything that you say, but i wont believe anything untill i get the EMG testing and thats in the clear.. i dont know rather my time is ticking or not there are other horrid dieases out there.. most autoimmune are .. ppms, parkinsos, MD, many many many more , i will keep everyone informs
possible more questions, if anyone dont mind putting up w me
thanks again everyone my prayers are with you all,, In JESUS NAME

Well, the part I added the bold to is pretty clear. Might I suggest you not post for opinions when you're not going to believe anything you're told anyway?

Oh--by the way--ALS hasn't been proven to be auto-immune. Think the vote is still out on whether Parkinson's is.

If the neuro didn't do an EMG, he obviously didn't think it was needed based on his exam. It seems you pick and choose what to believe even from your doctors. I do wish you the best.

I have a feeling you'll get your EMG--and if it's clear--you'll be back with "It was done too soon" (We've seen that here multiple times)

Seems you've already convinced yourself you have something sinister--rather than something that is perhaps treatable.

 

[trfogey]

I do understand you I seem to have upset you in some way i do apologize for this, what each in every one of you are dealing with, is unimagineable, from what my neuro stated to me was when the MRIS and what come back its NOT MS, and w ALS/MND the MRIS always show up clean..

Don't flatter yourself. You didn't upset me a bit. I just call them like I see them and yours is easy to call. I won't lose a minute's sleep over you.

I wrote what I wrote to you just as much for future readers of this forum as much as I did for you. Maybe one of them will read the responses I gave to you -- the facts and the figures and the reality about ALS -- and back off their crazy notion before they make a fool of themselves. It's probably a slim chance, if it helps one, it was worth it.

 

[rcharlton]

Allen, Patty and Kim,

Particularly great responses guys.

Do you mind my asking how much time each of you approximately spent in writing your replies? I think it's important for people unfamiliar with ALS to understand and appreciate how much time and effort go into your replies.

For example, most able bodied persons can probably crank a reply like mine in under 2 minutes while simultaneously driving to work and drinking a latte. Whereas in my case, it took over 10 minutes using my onscreen keyboard and foot operated mouse - and it required every ounce of concentration I have. For many other PALS it requires much more effort.

Al - I was thinking about merging these responses into my sticky - what do you think? Or is that just too much sticky info that new members never bother to read anyway? I might just include a link.

 

[Zaphoon]

I have full use of my hands and type pretty fast. It's the "thinking it out" part that slows me down! I'd say that response probably took a collective 20 minutes. The education it took to write that response took the better part of a year!

I'm still working on the maturity end of things...