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Wendy1

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Hello everyone.

I am very frightened at the possibility of an ALS dianosis.

It started with facial muscle weakness that at first I thought was TMJ. Then it was in my legs. I have trouble walking, and muscle atrophy in my left calf. The muscle is all but gone and I lost 10 pounds in one week.

I have major fasiculations in all weak areas and now they are moving up into my abdomen. My tounge feels thinck, and I have trouble getting words out. Trouble breathing lying down. Weak jaw and throat muscles make sleeping hard. First nero I saw was horrible. He noted brisk knee reflexes then He told me I probably had a virus and go see my regular doctor. Never checked out my limbs or anything. I made an appointment with the mda clinic and they cant see me until october. I get a little worse each day.

So far I have had a normal MRI except for cervical stenosis, but am told that would not cause all these symptoms.

Normal CPK, and no Lyme. Haven't got the west nile test back yet. Boy I sure wish I had west nile, how bad is that. Anything wouldbe better than this. I hate having to wait this long just tp go in ang get the EMG I so need. Its horrible to get doctor appointments out here. I have to wait a month just to see me regualr doctor. So I feel im going this alone.

I cant even handle each day Im so locked in depression and fear. Every day I wake up, I seem to be worse somewhat. I originaly though this was a setback from the gullian barre I had in 2003, but was told no as I have brisk reflexes. Also no sensory at all.

I have searched for any mimicks this could be but none fit: (I thinks its horrible that in my condition I have to wait so long, and that the first neurologist blew me off like that. I know the MDA clinic is good, but 4 month wait? When I'm having breathing problems now? This is insane.

The neuros comment that I saw was, well if your breathing gets bad go back
to the ER. I awas so deperate for a good neuro to see me now, I posted an ad on craigs list....... with no response. I'm not dealing very well. I'm only 33 and the mother of a 4 year old .

Wendy
 
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TBear

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Where are you from Wendy?
 

Wendy1

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Re: possible ALS diagnosis

Wow,

Sorry about all the typos. My fingers on the left side are weak and its really affecting my typing. I should have proofread.

I am in Arizona. Good news. the Neuro called and has a cancelation for the EMG, so I am getting it on Monday.

Can't come soon enough.

Does anyone get these spasms in thier throat that are worse after eating or drinking anything? Thats been happening to me today and it frightening.
My tounge also has a lot movement along with it today which is annoying in itself.

Another good thong,I called MDA clinic checking for cancelations. She told me to all monday that she may have one for the 30th. I'm crossing my fingers.

Wendy
 
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dana

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Wendy,
I know that this is a horribly scary time for you. My dad has been going in and out of doctors offices for the past few months. They told my dad that he has early symptoms of ALS, and it has totally sucked watching him get worse as the year has gone on. The only thing that I can tell you that helps me feel better when I am completely scared by this illness is to pray. I don't know if you believe in God, but I feel like His grace has helped me and my family for the past few trying months. Just know that things are in His hands, and no matter how bad things get, you will find ways to get through this. I'll pray for you and hope that all of your doctor visits go well.
Dana
 

Wendy1

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re

Thanks for replying. I have believed in God all my life.
I always felt he was with me,... and last night I was so mad I was yelling at God,wanting to know why he is leaving me now. Wondering if this is punishement for major mistakes I have made in my life.

Yet I know hes there. But I have known what ALS is for years, and
always felt compasionate for people that have this and thier familes.
In my mind its the worst way to die, so now it seems that my worse
fears may be comming true, so that is why I am so angry with God I guess, he knows this is something I just cant handle.

The GBS in 2003 was hard enough being paralized then, and this is much worse. I also have to wonder if it wouldnt even be quiker with me with
the nerve dammag already done.

I guess its not up to us to question God ,....and this would never change my faith,... but make me question his closeness.

What gets me the most are the long doctors waits. I have been waiting a month just to get into a regular doctor. Ive seen the neuro before him!

I pray your father is hanging in there. I know hard this is. The fear is
so overwhelming, along with the disability.

My early hope was this was CIPD, but its not with the brisk relexes.
In my heart I just know,... and from reading every medical site I can find and going over all the mimicks, and knowing what tests I have had done so far. .... I have done the relfex tests on myself even with the help of a video thats on here somewhere. I show upper and lower signs both.
Does not look good,... but at least with getting it confirmed mabey I can get into trials or something, instead of sitting here feeling so helpless.
I read some stories where people get diagnosed in two weeks,... wow
wish I lived there! lol

It also gets me how underfunded this is, and seems much more prevailant that what is said in numbers. This is the bad side of capitalism.
The side that gets brushed under the rug:(

Wendy
 

me

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Wendy - I can't imagine the anguish and fear you are feeling. I'm so glad the neurolgoist was able to get you in for an EMG sooner. I know that the unknown is so scary. We are all here for you. That's the great thing about this forum, feel free to feel however you feel. Keep us posted. Melissa
 

Jessie

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New and Frightened

Hi Wendy,
My heart goes out to you at this frighteneing and traumatic time. So glad to hear you are getting to see some specialists sooner rather than later. Keep being a "nag". We found we had to "call them because they didn't always call us". You know--- "the squeaky wheel"

Also, accept whatever help friends and family offer. Early on, we felt we should handle everything on our own. Someone pointed out to me that not only is the help good for you but it makes others feel that they are able to do something positive in the face of this wretched disease.

Lastly and I'm sure you already know this: enjoy the little gifts in each day. It sounds like "Pollyanna" but it is something to strive for. Your little four year old knows how to do this! He/she can help you with this.
I will keep you in my prayers. Stay strong.
Jessie
 

dana

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I know that you said you tested negative for Lymes. Where were you tested at? My dad tested negative for Lymes twice at the Mayo Clinic in AZ. We then had him tested at the I Gene X lab in Palo Alto, CA. He tested positive there twice. The doctors said there is no doubt that he has Lymes which is effecting the left side of his brain. This does not rule out the whole ALS diagnosis though. Some doctors believe that ALS is the end stage of Lymes. My dad started receiving treatments for the Lymes and feels like some of his symptoms are getting better. He has problems with his speech (very slow talking and only one-two word phrases at a time), beginning stages of choking, phlem in his throat, and starting to get cramping and twitching sensations in his arms and legs. Since taking the antibiotics for Lymes (which has been about a week and a half), he has only had the twitching and cramping sensation once. The doctor he is seeing has ALS/Lymes too. He was bed ridden before his treatments a year and a half ago, and is now working 8 hour days. You can get the blood test from I Gene X lab in the mail. Just something to think about. This lab is reccommended for being highly accurate with its readings. You might want to ask your doc about it when you go. Good luck with your appointments, and just take one day at a time. That is all you can do. God bless, stay strong, and try to keep your spirits up.
Dana
 

Wendy1

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Do they have a website or anything?

With me though, I am allergic to almost all antibitocs. I have
severe anaphalactic reactions. It took 4 month to get rid of UTI that turned into a kidey infection as I was allergic to 5 antibitocs until they found one I can take. I know they give rocefen for lyme, but
I am deathly allergic. All I can take really is zpac, and doxycyline.

My labs were done last year tested at the az heart hospital and again
last week through labcore. Is there a website for this other lab?

I dont remember ever being bit by a tic, just a lot of spider and mosquito bites. They love me. I have been bit by brown recluse, black widow, stung by a scorpian,lol I hate bugs!

Wendy
 

dana

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The phone number for I Gene X lab is 1-800-832-3200.

My dad is currently taking the rocephin, and has not had any bad reactions. Although today he said he is not feeling well.

Could it be from the meds...only time will tell I guess. He is going to start taking some oral medications too in a couple of weeks. Hopefully this phone number will help you out.

Dana
 
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Theresa2004

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Hi Wendy. I am not much into all the medical aspects for testing, as I have not had direct exposure to it as most of the forum has.
I was wondering how long you have been experiencing all these symptoms, how rapidly they came on, unless I missed something in the reads?
You seem young to have this, athough I am aware it can strike this young.
There are a few more people you will come across on the forum that will also offer suggestions to you.
Try to stay positive, first and foremost. Be aggressive with the doctors as others have mentioned.
I don't think there is a person on this forum with any religious beliefs who hasn't gotten pretty darn angry at God. It is natural. I thought at first the reasons ALS touched my life was because I/we were being punished. But after meeting so many incredible people diagnosed with this, God doesn't work that way. Unfortunately, we will never know the reasons why.
Take care, and keep us posted.
 

Wendy1

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Re

Thanks for that information. I called them and they are mailing me the lab forms as my printer does not work.


My symptoms of noticable weakness started about 6 weeks ago I would say. First in the facial muscles. I thought it was TMJ and wasted 200 dollars on a TMJ specialist who told me to go see a neuro that I did not have TMJ. In a couple weeks I started tripping over my rugs and getting jerks in my muscles. Then my left started to get weak, and my mother noticed I was skinnier than my right leg.

She was right I have lost most of the muscle in my left leg, more lower than upper. Both legs are weak. They now feel heavy, its hard to get around. They twitch and jerk, and the twitching and jerking is also in the butt, and abdomen.

In my arms that are also weak. It's hard to hold plates and cups and I frequently drop them. After I use my arms , the muscles just seem to tense up and hurt in the muscle. Its hard to type, and I can no longer play my piano.

My tounge feels thick in my mouth and I jumble my words, the jaw weakness is horrible, and my tounge keeps moving, it's hard to sleep, for when I lie down my throat feels like its being cut off, and my jaw hangs. It's also almost immposible for me to breathe lying down. The MRI was horroble, I was sufficating. I can not move my left 4 toes at all.

Everything is worse on my left side, also have brisk reflexes, that sums up my symptoms for now. Yeah I'm too young, only 33. I have had a lot of illness in my life, and am always told you're too young to have all these problems. Story of my life. Maybe because I lived it up too much at an early age, my illness history, HEB b, Hepc but neg pcr, Gullian barre, Chrons, Ventricular ecctopy with autonomic dysfunction, blood clot, TIA, low potassium problems, (normal now) , c diff, gout, mitral regurg, influenza, sgojregns, and ehlers danlos 3, too much, I'm sure I forgot some.

I have been hopitalized so many times. I hate it there. It's just not natural for someone to have so manyy health problems all their life, may be my body has just said enough is enough, and my nervous system has decided I got on its last nerve. :)

I'll never loose my dry sense of humor.... Anyway, I'm just so tired. Im tired of always being sick, being the family gossip, and not being able to do what I want in life. I Haven't been able to work for 4 years due to illness, while others go about their careers, and now this. I thought it was bad before. Today I kept myself busy by talking to friends on the phone... Last night i took a lorazapam to calm me down as the spasms in the neck area were so bad, and I got a high fever from if for the second time. I guess no more of that. I am going to ask my doctor for some anti-depressents on the 5th. I know when enough is enough.

We had an electrical storm out here last night and felt like going and sitting in the pool. That's when I decided I need some medicated help! Thats not like me at all, If I wasnt so ill I would never be depressed, but the years take a toll on you under the best of circumstances. Im know I'm down right now, but once I get out of this dark area, you guys will see me for how I really am, I'm not all doom and gloom. I am right now as I do seem to take this a spiritual as well as a physical attack.

I have never questioned my faith until now, and that hurts more than this disease. My EMG is Monday, so I will know more. I think its hitting me fast due to the nerve damage from the GBS. I wouldn't even know how to call it, limb onset or bulbar since both got me at the same time. My husband and I are already talking about what we will do if this is the case, and advanced directives, trading the car for a van etc.... too much at once......
 
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Al

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Hi Wendy. It sounds like you have a lot going on and it doesn't sound encouraging. I know what you mean when you talk about being in a dark place. I think we all have been there. People sometimes tell me I have a great atitude about this disease and I jokingly say yes but you haven't seen me out in a field screaming at the moon in the middle of the night. I know you want to do something similar. It's not easy. There is the denial and then the why me and the bargaining. You'll go through some of these stages and maybe not all of them. I'd try to keep a positive attitude until you get your diagnosis. It is easier said than done but with the help of your family and friends you will get through it no matter what the outcome.
On the breathing problem before I got my Bipap machine I found it was easier to breathe on my right side with my left leg crossed over my right and my right arm over my head under the pillow. Try that. Also when you see the Neuro make sure he understands your breathing problems and tell him you want to see a Pulmonologist with some experience in ALS. Just in case that is what you have. Hopefully there is one near you. Good luck and keep us posted.
We care and are here to offer help and a shoulder to cry on if need be.
 

Wendy1

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Jun 23, 2005
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Eng done today

Ok, The doctor isnt evens ure whats goin on now.

I had an emg and nerve conduction done on my weakest limb today.

It was abnormal.Let me see what I an remember. It showed posotive sharp waves, but he said he didnt see any fibrilations on the test.
It showed definite muscle weakness, but he says he sees evedince
of renervation rather that denervation but says that could be
healing occuring from the GBS back in 2003. In als will all limbs show
fibrlations? He only tested the weakest limb, but didnt do anything
on my facial muscles that are REAL bad. I dont know if it makes a difference that there were no fasiculations going on at the time I was there, though they are pretty regular.

He did say west nile can still be the culprate, but tests are not back yet.If it is from west nile, there is no recovery.
He recomeneded I goto MDA clinic, which I am already regitered,but
my appointment is not until october. I call every day looking for canelations. He alsorecomended physical therpay for the weak muscles,
but I am afraid to do that, as when I exercise the weak muscles, they just get worse and stay that way. ....

I asked himif this could be als, he said he cant rule it out, but that he doubts it, as he has never seen anyone with GBS then get Als,.... I told him you dont my luck,lol ......

He said that it could be my body repairing thedamage from the gbs.
that dont make sense. Why would I just now start getting weakness, when I was 99 percent back to normal for the last 2 years. Not to mention weakness in areas that were not affected by the gbs...... UGg more
questions than answers.

One good thing though, I had a severe asthma attack last night (thats not the good thing,lol) and I went to the ER. I told the er doctor my history of whats going on and he checked my FVc or something like that, that tests
the strengh of the diaphram, and he said that its normal. Looks like my breathing problems may just be asthma and not realted to the muscle weakness. ..
I wish the neuro would have tested all areas. ......
I remember one part of the test, where its supposed to make your foot move and mine didnt, thats where he said you have defininte weakness, (
as If I didnt know that already,lol ) He did note the atrophy of that leg.
Any ideas anyone?
 

Carol Deboer

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Hi Wendy,

Welcome to our home. I am sorry that I have not posted earlier to welcome you, but, I have been very busy with work and kids and stuff. You know the drill. I am sorry that you are having such a hard time not getting a positive diagnosed. It is a very difficult time for you. I can hear it in your "voice". Needless to say, the health systems are the same all across the world aren't they? It sounds like you made some headway with your tests, however, you still do not have a positive answer to your symptoms. I am definitely not a professional, but, it does sound like you have many of the als traits. Keep on the doctors. Do not give up until you have the answers. You have had a hard time with illness, and it does not seem fair that you maybe facing als or something that could keep you down again. I hope with all of my heart that it is not als. Lets hope and pray for the best. Keep us posted. I have been down that road with my husband, who just passed away in March, and I must say that the courage and strength that you show here will sustain you and your family. Remember, you are not alone. Even though you live miles away we are here for you. I have made many dear and close friends over the past 3 years on this forum, and I would not trade them for all the gold in the world. (okay, some of the gold) ha.... Like Al and Lee, they are two of the best buddies in the world, and I have not even met them face to face. Kim, I talk on the phone with her every few weeks, and she live 3000 miles away from me. TBear, has been a constant rock for me, as you know he lost his dear wife Mary to als a few years ago. Theresa, is a constant source of support and comfort. Mike, is a constant source of info and caring. Chris, again, lots of info and support. And all the rest of the gang that post here and contribute there ideas, love and concern. I think that a lot of times things on the forum are too technical and clinical. However, that is a good thing too. I find that I shy away from the professional mumble jumble a lot, and focus on the well being and mind set of the person. That is just my way. I know all of the shit that comes along with als. Believe me, my education came from reading, and researching everything I could possibly get my hands on. And Henry searched everything on als from all corners of the world. The outcome, well we were well schooled about a diesease that ultimately we had no control over. We learned to live with it. And for the most part, did a great job. Faith was an all time thing that we focused on here and that really gave us what we needed just to get through each day, and every modification that came along with it. You will do fine.. Do not give up on the doctors, become an advocate for yourself. Keep on them. They will eventually come to a diagnosed for you. I hope that you will reamain strong and learn that our fate and destiny is in the Lords hands. He will guide you through this tough time. We will add you to our prayer list, and will make sure that you are granted comfort. Please remember, we are here for you. All of us. Your questions will be answered to the best of our abilities, and if we do not have them, we will find them. Have a good night and stay strong.

Love, Carol Sending a hug to you too xoxo
 
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