Please Read/Help

[Robynnblue]

I will try to keep this brief, I first would like to apologize for posting a message on anyones page, done completly out of panic, and sheer desperation, which I hope everyone can understand.

I'm a 39 year old female, and I have had alot of scary stuff going on the past 4 months or so. Started with shaking in my legs, and then I noticed my legs where shaking when I went down stairs, then I went to see my doctor and she saw or discovered that I have clonus in my left ankle. I told her the muscles in my legs feel very tight, and she sent me off to a neurologist.

The Neurologist sent me off for a MRI of brain and c-spine and some basic blood work. Blood work checking for thyroid issues, B12, and diabetes. All blood work was normal excerpt an elevated B12 (wich wasnt a concern he said). But everything else, including the MRI's was clear.

This is the part I am having a hard time dealing with, My Neuro thinks its all severe anxiety (wich I do have BIG time). But when I read information on ALS, it very planely states that there has to be upper and lower motor neuron involment.

So with that being said, dont I have both if I have the ankle clonus, brisk reflexes ALL OVER, and muscle spasms or tightning, (I cant tell if there is a difference) and also muscle twitching all over but mostly in legs (not just the bad leg with the ankle clonus)

Am I not meeting the critearia for upper and lower motor neuron involment? And if I am, why is he chalking it all up to anxiety?

If it helps, my other symptoms are
feeling very unstable when I walk, kind of like being on a moving boat, even feel it while sitting.
Muscle tightning from head to toe almost, face, back, arms, and deff legs.
The clonus is bad when I'm nervous, if I'm very relaxed its not as pronounced.
I feel tired alot, dont know if that means anything or if its just from all the worry.
And the muscle twitching which some days is worse than others, if I move around alot, or excert my muscles they tend to twitch more. somedays I only have few noticeable ones.

My Neuro says I am worring for no good reason but I dont see how that is considering the symptoms that I'm displaying,
Can anyone help me make sense of this? PLEASE, I'm so lost.

Just in case anyone is wondering no, I dont have any muscle weakness yet, but I was told by one doc (not Neuro) that ALS doesnt have to present with muscle weakness. Just added to my confusion because I was told I would have weakness in at least a finger if not a hand or arm, or foot and then it moves on from there. Help

 

[BarryG]

You know, if you don't have muscle weakness then you don't have ALS. That is the only thing that matters. If all you have is twitches and clonus then you might be a good candidate to take up tap dancing but without some weakness somewhere it aint ALS. Sorry to the doc but I don't believe him.

Listen to what Wright has been telling you (many times) and get some help for your anxiety issues. Once you calm down you will realize that the mind does control the body.

Good luck

 

[Robynnblue]

Hi Barry, and thank u so much for responding to my post. I know Wright has been talking to me but he is a smidge abbrubt and when I dont get much explanation then its hard for me to calm down. But I know Wright was trying to help just felt a little brash for me, I'm a whimp these days. But my question for u would be, why do some of the ALS literature state that on 60% percent of patients present with weakness, do the other 40% present with the clonus and twitches, or does that stuff come later, this is the stuff that keeps me confused, I'm not trying to sound of be argumentitive, I'm just trying so hard to understand, theres seems to be so much conflicting info out there. And people keep getting nasty with me because I keep asking questions, I'm just scared and trying to find my way, which anyone in this situation would. Thank u for trying to help, I do appreciate

 

[Robynnblue]

And also Barry, what did u mean when u said "sorry to the doc, but u dont believe him". Was just wondering.:grin:

 

[Moonmark]

Hi Robbynblue-

did your neurologist conduct an EMG? I do not see any other postings here, but it appears maybe you have been posting on people's profile pages and getting responses that way? if you had a negative EMG in the light of these symptoms of muscle shaking, etc, then from what I have read/been told by two neurologists (both ALS specialists), you do not have ALS. especially if you do not have any muscle weakness.

perhaps something else is going on with you? did the neuro want to see you in three to six months? did he or she suggest that some other neurological problem may be afoot, or did he just say anxiety? you could always get a second opinion.

Good luck-Sandra

 

[Robynnblue]

Thanks for responding Sandra (thats my moms name) any way, no, I was a wimp the day of my EMG and the neuro never got past my foot and ankle because I was coming off the table with every zap he gave me, so no, no EMG really, but what little he did get he said was all normal readings. And No, he didnt say he needed to see me back, he just said call if u need to, and sent me on my way to my little hell I've been living in for 4 months now, but I already called his office and made an app for next wednesday, I want that EMG, if I have to be strapped to the table I want it done., LOL

Everyone keeps saying that if I dont have muscle weakness than I dont have ALS, and I know I wont get that diagnosed unless I have muscle weakness, but my concern is that all this stuff I do have is the presenting early onset symptoms. Thats where my confusion and concern lye.

 

[BarryG]

"Just in case anyone is wondering no, I dont have any muscle weakness yet, but I was told by one doc (not Neuro) that ALS doesnt have to present with muscle weakness."

That is what I was referring to when I said that I didn't believe your doctor. My only advice to you is to get to see a competent neurologist, do the tests and then believe what he/she tells you.

Good luck

 

[Robynnblue]

Hey Barry thank u for taking the time for me, only one other person has.

 

[limegreenphysicist]

Baby girl,

If you don't have any weakness, baby you don't have ALS. I'm not saying nothing is going on with you but weakness is hallmark for ALS. I would care to wonder about why you have clonus but upper motor jazz can been caused by anxiety. Do you have brisk reflexes? Do you have atrophy? I would also care to know what quack told you ALS doesnt present with weakness. You state that you have upper and lower motor symptoms. Lower motor symptoms are weakness and atrophy..they say fascics but alot of peeps have fascics. Head over to the BFS sites you will probably get alot of comfort there with them.

Also lower motor is confirmed through EMG and the shocking thing is the NCV not EMG. EMG are the scary needles that they jab unrelentlously into your muscles and a foot is not substantial in evaluating muscles because there is only one muscle there to test. My ALS doc didnt even go to my feet and only did the hand to further evaluate the dirty in my ulnar nerve that was causing my clumsiness. Lastly, even if you get a dirty EMG it doesnt mean you have ALS.

If your EMG is clean please move on with your life and if you have the dirty we are all here and life doesn't end at a diagnosis rather with me it began that day.

If ya need me I am here just PM me seems like you have made enough posts in paranoia to PM me now

Love,
Kelly

Forgive my sad attempt at sound effects..I'm feeling fantastic today so I'm in one of those moods

 

[Robynnblue]

I dont have any "clinical weakness" but I do have very weak limbs, or should I say very tired feeling, overworked or something like that. I do need help sorting this stuff out, because everything seems to be getting all tangled in my head at this point. Thank u for making the offer to help me, I couldnt pm u for some reason, but I did post on ur page, so please let me know how we can talk, I have babies and somehow I have to get a grip and return to being a mother. Thank u for ur time, seriously, thank u

 

[sadiemae]

Robynnblue, you need about 10 or more posts in order to PM. I am sure Wright was not being abrupt or harsh with you, It is just when people refuse to listen to doctors, and then refuse to listen to our advice, we say it in terms we hope you understand. Read the posts(stickys) at the beginning of the Do I have ALS forums. Read everyone, and then come back and post again. HUGS Lori

 

[Twinsmom]

Dear Robynblue,
Sorry you are having such a difficult time right now. While it is very scary to be in the "unknown"...by your own definition, you are very anxious...that can make the twitching worse. If any of us come off as rather direct and "abrupt", please remember, that from this end, it is really frustrating to witness someone like yourself, create all this unnecessary stress on yourself, by not trusting in your doctors, and not believing our feedback as well. Wright is our community "expert" in making sense of the EMG/NCT tests, but please remember, we are all just educated laypeople, who have been personally effected in some way by MND/ALS. We should NOT be taking the place of the medical professionals you are seeing.

If you don't believe you are in competent hands, then change doctors. The internet is a vicious place for feeding our fears and imagination with all kinds of horrific possibilities. Not being strong, and muscle weakness are 2 different things...talk to your doctor about some physical strengthening activities and some anti-anxiety medication.

I hope you get to the bottom of your symptoms, and experience relief soon!
Peace,

 

[Robynnblue]

Thank u to everyone that has responded to my panic post. I'm sorry for any toes I may have stepped on, and I do understand how frustrating it must be to be living with this disease and have paranoid people getting on here terrified that they have it. I wasnt trying to put Wright down, I do know he is very inteligent and I'm sure very valuable to this site, but some people that come on (myself included) have some real symptoms going on and could very well be at there breaking point. I just think they should be handled carefully. Being abrubt or brash, could be all it takes to send one of these people over the edge. But I got lucky and found someone who was willing to sit and help me understand what may be happening with me, and for that I am truely thankful, and grateful to this site, Thank u all and best wishes for everyone, I keep ya posted.

 

[sadiemae]

If you are that fragile that a comment from a lay person on the internet could send you over the edge, PLEASE stay of the internet. You need to be strong and sensible. If you are having problems coping with thinking you have ALS, just try to remember, WE ARE coping with HAVING ALS, and we are not going over the edge. Melodyparrish has been on this road with her husband for a while now, and she is one very in control lady. You need to get a grip, and deal with this with logic, not hysteria and paranoia if you want to benefit from our knowledge. Did you read the stickys I suggested? HUGS Lori PS If I come off a little harsh, it may be because I had a rough emotional rollercoaster of a day today. (As usual)

 

[halfin]

I want to remind people that we were attacked a few days ago by a poster who used multiple identities to sow discord and confusion. One of their tactics was to try to drive a wedge between members of our community by drawing a distinction between the purportedly helpful and friendly comments by some, versus the less helpful and critical comments by others. These various identities had symptoms that point away from ALS but they were argumentative and kept repeating somewhat hair-splitting questions about why their symptoms did not count as ALS.

Given the abrupt way this person's identities were kicked off the site, and the ease of creating new Internet identities, I expect that it's very likely that this person will continue to return under new names.

I can't help noticing that this thread bears some similarities to the earlier postings which proved so troublesome. The themes and even the tone of the writing seems familiar. While we can and should offer friendship and help to those in genuine need, let us not forget the recent sad events and remain watchful against attempts to splinter our small community