New member Hello everybody!

[beyondwhatisnormal]

This is the first time I've ever participated in a forum of any kind...so bearwith me. I am no stranger to the devastations or problems of life. Actually, I am a better person as a result of some of my hardest life lessons. But I must say that in all my 50+ years of life this trial is by far the most heart wrenching for me. I have faced death in my life on more than one occasion and in fact I am presently disabled.

I joined this forum today because I am in search of answers. I suspect that my daughter has ALS. Falling down, slurred speech, tremors, cramping, weak muscles, upper and lower limb twitching are all things she has told me about.

She has had an MRI and some other testing trying to see if it is MS. The doctors were not able to find anything. In fact, they started to tell her that it was "stress" related
(even though she has no history of any emotional problems). After dealing with that on top of being frightened by all the things her body is doing (and getting no help or answers), she has become depressed and is giving up...I can hear it in her voice and conversatiion.

She has ceased going to doctors and has no faith or hope in them. I have finally convinced her to get an appointment with either Mayo Cllinic or Johns Hopkins Hosp. The first serious episode happened almost a year ago and it has been progressing steadily.

I don't want to diagnos anything because I am not a physician and many illnesses mimic other illnesses. But for the sake of my child I have been doing research so that I can get her some help. Honestlly, of everything that I have come across, this ALS seems to fit everything she has said. I want to be wrong.....but of all the things that I've read, when I read those things I just got a really horrible gut feeling. It felt like a cold quiet wave went through my body. I cried and screamed and cried.

My plan at this point is to get my kid (she's an adult by the way) to John Hopkins Hospital for proper testing and to try not to be any more frightened than I already am.
Even if it turns out not to be ALS ( I'm still optimistic even though I may not sound like it)I know that whatever it is is life-changing.

Thanks for your listening ear. beyondwhatisnormal

[PDaddy]

Welcome to this great forum! There are many people here going through similar situations who can provide excellent guidance. I hope she DOESN'T HAVE ALS!

[olly]

i am so sorry for you and your daughter that you should be going through this hell.
you can tell straight away if something is stress related and in your daughters case it does not sound like it is. some docs/neuros will say its stress or all in the mind if tests come back ok, i think its to protect there ego.
your daughter must be in her 30's, that would be a bit too young for als , i would definatly get her an appointment at mayo clinic. they will be able to run days of tests and give her a accurate dx. it will hopefully give you both relief and peace of mind if they can dx something other than als.
take good care
caroline:-D

[rose]

Having anything wrong with our kids has to be the worst! I really feel for you and her both. I do go down to Johns Hopkins and am very impressed with them. No complaints at all. I hope she's able to be seen there, or somewhere qualified soon.

[crystalkk]

Hi beyondwhatsnormal,

Do you live near your daughter? How old is your daughter? I can relate to her giving up on drs, it is very frustrating when you know something is wrong, and you have drs, telling you it's all in your head , stress, or anixiety.

She is very lucky to have a mother like you that is determined to find her answers.
Try and stay optimistic, it could be nuemerous things most of them treatable.

Hang in there,

[leegardens]

Dear Beyond,
I consider myself a strong person but it is so painful to feel your child's pain. It doesn't get any easier no matter how old they are. I am sure you are hurting for her.

Keep talking to your daughter and encouraging her to keep searching to find the cause of her health problems. She is lucky to have you on her side. In my experience most doctors are most familiar with their own specialty. You can't give up, you just have to find the right specialist that recognizes her symptoms. Keep fighting for her. I know she is lucky to have you and you will find the help she needs.

Lee

[beyondwhatisnormal]

Hello Everybodody,

I attempted to reply earllier but without much success. My 'computer savvy' leaves much to be desired.

I just want to say how grateful I am to know that you all are out there. Thanks so much for responding during this time of dispair.

I continue to have hope that ALS is not what my daughter has. But according to everything that I read, (and the things she has said) she appears to match point for point,,,falling down, constant twitching/ involuntary movements, cramping to the point of exhaustion, upper and lower limb twitching, slurred speech or difficulty speaking, tremors. In fact, the only thing that did not match is her age (still in her early 20's).

Whatever this may or may not prove to be, it will without fail be life-changing. I t already has changed our lives.

My daughter lives in another state but I am trying to find a place for us to live in Raliegh, NC. I don't think she is going to be able to work much longer (she calls in sick often) and I am living on my disability. This in itself is going to be a real challenge!

Her first serious episode was a year ago and it has been progressing ever since. She has been experiencing this twitching thing continuously and falling down. She hides things from me because she doesn't want to worry me (I have illnesses too).

I know she is frightened about the betrayal of her body. What is more frightening to me is that I can see that she is giving up and becoming despondent. She is very independent and always has been even as a little girl. She was always an 'old' little person. That is why I can see she is making a turn down an unfamiliar road....I've got to get my kid some answers, fast!

Thankfully, she has agreed to go once again to a doctor, so I need your help (this may be my last shot)

WITH THE POSSIBILITY OF THIS BEING THE LAST OPPORTUNITY TO GET HER DIAGNOSED,

WHICH IS THE BETTER OF THE TWO: JOHNS HOPKINS HOSPITAL OR MAYO? and WHY?

Thanks everybody for showing concern for my kid and I. Your welcome to this forum means a lot to me.

I will continue to fight for my kid especially since I know she is not able to defend herself right now.

If its one thing that I have learned through my being disabled, it is.....you have to be well to be sick! You have so much opposition whether it be your place of employment, the insurance companies, dealing with the WRONG doctors and the journey of finding the RIGHT doctor. This takes a lot of strength and courage at a time when you have the least of either.

ALL OF YOU WILL NEVER KNOW HOW MUCH OF DIFFERENCE YOU HAVE ALREADY MADE FOR ME.

MANY, MANY THANKS

beyondwhatisnormal

[beyondwhatisnormal]

Good morning neighbors,

There is a 24 year old person "i will apreciate if u answer" is the title of the post asking questions about what is going on with their body and what to do. I think it was posted July 5th or 6th.

This is all new to me so I did not know what to say. I do not want to say the wrong thing imagining that I am being helpful when in fact I am being harmful.

PLEASE, PLEASE, PLEASE WITH SUGAR ON TOP.....can someone with more information/experience talk to this
neighbor to share whatever you can?

This neighbor is the same age as my kid. Please help if you can.

Thanks so much. beyondwhatisnormal

[beyondwhatisnormal]

Good morning neighbor!

I have no clue as to what I am doing (technology skills especially) But hey, being clueless never stopped me before so why change now? (smile)

What I imagined I was doing was responding to messages sent to me. Apparently, that may or may not have transpired. I thought that you type in the 'Quick Reply" box and everybody sees it. Its going to take me a bit to get it almost right , so I'll keep messing up stuff until I do! (smile)

In the meantime, please look at my posting under "new member hello everybody" when you get a minute.

I appreciate your note to me more than you know. beyondwhatisnormal

[beyondwhatisnormal]

Hi Crystal,

I think I'm messing up in my attempts to respond to messages I've received. I thought that if you type in the 'Quick Reply" box that everyone sees it. Or ido you reply under each persons name?

Well, I hope you get this because I really do want to thank everyone for their response and caring.

If you get this and get the chance, try to read the message (that I apparently wrote to myself (smile) ) and let me know what your thoughts are.

Really......thank you. beyondwhatisnormal

[crystalkk]

When you quick reply everyone sees it.

After so many posts you will have more privledges and you can PM
(private message) and only that person will be able to read what you wrote.

[Jamiet]

I'm sorry for your situation. Your daughter has age on her side and that's a biggie..!!!!

YOu need to get her checked for lyme disease. Get her to send two vials of blood off, one blood and one plasma to IGENEX. Google it and it will tell you how to do it.

If it were me, based upon what i've heard, go to John Hopkins, NOT MAYO.

I am sorry to hear this, it breaks my heart.

God Bless you and your family.

Rgds,

Jamie

[fiddleplayer51]

Dear Beyond,
Welcome to the forum, but I'm so sorry about your fears for your daughter as well as that you have your own disability to deal with.
I take it that your daughter lives in North Carolina and that's why you've chosen Raleigh? There's an ALS Clinic at Duke University that some forum members go to. Duke is about 25 miles from Raleigh. Here's a link:

http://www.dukealsclinic.com/

I hope with all my heart that ALS is not in the picture for your daughter, but she needs to be evaluated as soon as possible.

As far as replying to others, to the right of the green "Quote" button are two icons. Click on the one that looks like a pencil and paper and it will take you down to the box that says "Quick Reply". After typing in your reply, click on the button that says "Post Quick Reply".

When you reply to someone's post, your reply doesn't necessarily appear under the post you're replying to. Your reply will appear as the last one in the thread just above the "Quick Reply" box.
Good luck and all good wishes to you, Beyond. Let us know further what happens with you and your daughter. She's so fortunate to have a mother like you.
Jane

[beyondwhatisnormal]

Good Evening Neighbors,

Thanks so much for the advice and pointing me in the right directiion. I need all the help I can get.

Generally speaking, I'm not the kind of person that feels not knowing is bliss. I'd rather know than not know (even if I am too overwhelmed to do anything about it.) Knowing gives me a choice even if I choose to do nothing. That is still a choice though not necessarily a good choice. How can you make a decision if you don't first face the truth? the good, the bad, and the ugly?

At any rate, today I went to the ALS Caregiver section. I wanted to see what caregivers are facing (in the event my daughter does have ALS). I came away from there with two trains of thought: one regarding my daughter and one regarding myself.

To watch my child live and die like that; there are no words that I can even think of at this point to describe that.
I do know that whatever choice she makes I will support and see that she has everything she wants whether I agree with it or not. I believe that everyone should have the dignity of making choices for their own life. To me, this kind of life decision should not be open for debate. I think we should listen and honor their decision.

BETWEEN NOW AND MONDAY, I WILL GET THAT APPOINTMENT FOR MY DAUGHTER. I will post the appointment date.

(2) I thought about my own life. People don't like to talk about death. It is scary, uncomfortable and you feel helpless and grieved. My personality being what it is, I am not able to NOT talk about it. I'm not a morbid person, in fact I'm that annoying person that always thinks the 'glass is half full not half empty'. That having been said, just because I CHOOSE to focus on the good I am by no means a resident of LA-LA-LAND.

I don't know if its because of my own health issues or what (but I have spoken openly with my family, including my daughter) about what I want done in the event that I become incapacitated. For me, I choose quality of life over quantity any day. Granted, my family doesn't want to hear it but I've told them that if they love me, let me live or go in a dignified way. I've asked them not to think they were killing me if they had to stop life support type medical equipment. They know that I am a person full of life, love, a fighter, fun, excitement, work, strategy and many other facets. They also know that I'm not half the woman that I used to be (due to illness) ..... but I can still hold my own.

It would kill me to know that my family had to suffer seeing me in a vegetative or non-functioning state imagining they were doing a good thing for me. It would be unnecessary suffering for them and for me since I would hate living like that. Me living like that is not even me anyway! That's just the way I feel about it.

The beauty of dignity is that each person gets to define what dignity is for them and them alone. My dignity is not someone elses and theirs is not mine. That is as it should be.

Respecting the dignity of someone you love is one of the greatest gifts you can give them. It shows them that you honor their feelings and their right to make one of the most important choices of their lifetime. Whether you agree with it or not. Its not about you, its about them. Isn't it?

If my friends or family choose to stay here, I will honor their wishes. I will be there by their bed-side doing things I would NEVER want them to do for me. In fact, I have already experienced this. I watched my friend of a lifetime die without the dignity she deserved. Because I was not a family member, I had to standby and watch her kids do all the things she hated, IMAGINING that they were doing something good for her. I would go to see her in the middle of the night when there was no one around and we would have girl talk and our own parties (even though for the most part she was not able to eat, it was just the thought of having the comfort foods there). She would be in comas sometimes and sometimes not. When she was lucid she would plead with me to do certain things, but I couldn't because I had no legal rights. I would go home and cry and talk to my then husband and he would try to comfort me. Whatever she asked me to do, I did it....until the family interfered. I stayed even though I was in the way. I am happy to know I gave her love and joy until she died. Its about love, respect and dignity.

I've always led a full life....never a dull minute! I've done lots of good things and lots of bad things. Things I'm proud of and things I'm ashamed of. Such is life. But I've never felt that my happiness comes from other people. I've always felt that at the end of the day, it was up to me to be happy. Have other people made me happy? Absolutely! But those were gifts...it was still MY responsibility to be in charge of my happiness. I've always felt that happiness comes from the inside out not the other way around. And whenever I forget this and start to depend on and expect others to be responsible for my happiness LIFE has a way of reminding me (quite painfully I might add). I still have amnesia on this point from time to time......but I eventually find my way back to me.

I am not afraid of death. I'm more afraid of living like a dead person.

I have decided I am not going to read any more about ALS. At this point that is not benefiting me.
If my daughter has ALS, then I will proceed to find out all I can and what my options are.

This is too painful to deal with without having had an actual diagnosis....and until then, no more research.

When reading other postings, I noticed that the neighbors go out of their way (while not claiming to be doctors)
to try to alleviate unnecessary fear and worry. I noticed the compassion of this right away. Our neigbors with ALS or loved ones with ALS know for a fact the devastation and pain of this disease and if there is any remote chance that they can spare one person the unnecessary anguish/worry of this disease they try to give comfort and reassurance that more than likely they don't have ALS. I noticed that. Honestly, that is very compassionate.

So....I will post the appointment date. Then I will also post the diagnosis.

Jehovah God has never failed me in all of my life. He has either removed the mountain or given me the strength 'beyond what is normal' to bear the weight of the mountain. Either way is alright with me.

[fiddleplayer51]

Dear Beyond,
Thanks for posting. I was like you: when my PALS husband was being diagnosed and the first mention of ALS was made (not by a neurologist, but by an ENT), I came home from the ENT appointment with my husband and found I could not, WOULD NOT, read anything about ALS. Just like you said "This is too painful to deal with without having had an actual diagnosis....and until then, no more research." I can totally relate to that.
I appreciate that you will post the appointment date and the diagnosis, and I applaud your stepping back for now. You will be able to maintain your strength better for now if you don't overwhelm yourself (hopefully needlessly) with what you read about ALS.
I also can identify with the two trains of thought you mentioned: one for your daughter and one for you.
Peace to you, Beyond. Have courage and strength.
Jane

[beyondwhatisnormal]

Hi Jane and neighbors!

Just a brief update. I did contact Johns Hopkins Hospital ALS Clinic. I was informed that in order to make an appointment:

[crystalkk]

Your post got cut off and I am very intersted to here the part about in order to make an appointment:

[beyondwhatisnormal]

Hi Crystal,

Thanks for letting me know that my posting was cut off. Actually, I wrote last week and the same thing happened.
Emotions are hard for me to recapture because I am usually in the moment when I write, but facts I can do!

1. First you will need a referral from your doctor as well as your medical records (tests, lab work etc. as they view themselves as a second opinion) You will also probably need to sign a release of information for you doctor to be able to release your medical records to Johns Hopkins.

2. Your doctor (or whomever) could then fax the referral and records to:

FAX: 410/955-0672 PHONE: 410/614-5972

DeeAnna Fearson - Administative Assistant to Dr. Jeffrey Rothstein, Director of the Packard Center

3. Then, once they receive your medical records, their doctors will look over your records and hopefully, an appointment will be made (I am at the process point where Johns Hopkins is checking for receipt of my daughter's medical records that have supposedly been faxed from her doctors office. I will follow up on that later today.)

PS. Follow up on each step of the process to make sure that the process is going as planned (without being a pest of course but with kind persistance.) Things that I thought were being taken care of actually were not. But I guess thats true with anything.

John Hopkins Nuerology
600 N. Wolfe Street/ Meyer 6-113
Baltimore, MD 21287-5953 dfearso1@jhmi.edu


Hope this helps a bit. Oh, if any information on here is inaccurate please let me know.

Keep moving forward! Beyond

[crystalkk]

beyond,

thank you for the info

[fiddleplayer51]

Dear Beyond,
I'm glad you've gotten this far in the process. You're absolutely right that you've got to follow up on each step. So many times we've encountered barriers because someone did not do his/her part. It's a pain to be persistent and pro-active, but it's less of a pain than finding out that something has been forgotten or neglected.
Thanks for posting all this useful information.
Good luck and godspeed,
Jane

[beyondwhatisnormal]

Hello Everybody,

Rejoice with me! Good news, good news! That is what I hope to be saying once we have seen the specialists at Johns Hopkins Hospital.

Just wanted you to know that I finally got an appointment date at Johns Hopkins Hospital. September 17th. I have no idea how I'm going to pay for it (it is out of state and her insurance doesn't cover most of it) but somehow my kid is going!

I'm hoping that the next time we talk I can tell you that we've found some answers and that things were not as bad as I imagined. I'm praying for a 'bad' but 'do-able' diagnosis. Can you imagine praying for 'bad' as if that is something 'good"? What's wrong with this picture???? Well, whether I like it or not, that is where we are.

Even if we don't find out what the problem is, at least we will be able to eliminate the major suspect, ALS. In fact to eliminate ALS would be a MAJOR relief (I still haven't told my daughter that this is an ALS appointment. I didn't want her finding out about ALS unless she is diagnosed with it). ALS is very cruel.

I told my daughter that hopefully we will get some answers but even if we don't we are still one more step closer to finding the answer. It is a step without promises, but a step that must be taken nonetheless. The choice to do nothing is still a choice....with consequences.....good and bad. You may as well be active in your own life and at least try to swing the odds in your favor as much as possible.

When I was a kid I used to love to swing at the playground. I can still feel the wonderful breeze on my face even now (smile). I kick my legs out and push higher and higher. We still need to keep kicking our legs out and pushing through life to enjoy its wonderful breezes.

Keep swinging everybody! Beyond

[PDaddy]

We are hoping and praying for good news soon!

[crystalkk]

Beyond,

Your Daughter is very lucky to have you....
That's great that you got the appointment!!!
Who are you going to see there, is it the director himself, Dr. Rothstein?

[brendapals]

beyond

I will keep you and your daughter in my thoughts and prayers!

Keep the faith,
brenda

[beyondwhatisnormal]

Hi Crystal,

Dr. Rothstein referred us to a Dr. Dash. The waiting is agonizing .....but there is also that ray of hope and possibilities.

Thanks for complimenting me. Actually, I think I am the one who is blessed to have her. I can honestly say that she has always been a good daughter. That is not to say that there have never been any battles and 'exciting' moments between us....but they were just that....only moments in time. She has no problem telling me what she really thinks and I have no problem telling her either. But on the other hand , she protects my feelings and I protect hers. She doesn't tell me everything and I don't tell her everything either. I don't believe she could take that and neither could I. Sometimes we parents 'think' we want to know everything that's going on. I think that's a good idea in theory only! But I feel (hope) we share enough of our lives to continue to love each other and to be there for one another. She has always been there for me, too. She is loved and I feel loved by her.

If at the end of the day your kids love you and you love them, you have good friends and you yourself are thought of as a good friend you have much more than the majority of people you see every day. The good part about it is that you can start any time you want to grow love and new friendships......even today!

I wish Love and Friendships for all . Beyond