Status
Not open for further replies.

happy

Distinguished member
Joined
Feb 11, 2008
Messages
203
Reason
Learn about ALS
Country
US
State
CA
City
Fair Oaks
Strange but good

Hi all
I hope you all had a great saturday.
It seems kinda weird but today almost all of my symptoms were gone. I did not have the slurring, the tripping, the aching in my arm. Nothing! The only thing that was mildly annoying was not knowing what in the heck is going on. My hand is still atrophyed and I have limited use as far as dexterity a few twitches, but my legs and my feet even felt good I felt like i could walk without lifting my knee conscienely. I had way more energy than i have had in 2 weeks. I went shopping and bought myself some clothes and even contemplated going to the gym. But then I thought I better not push my luck. I knew the gym would be only for the sheer purspose of riding the bike. I in no way felt as if I could push myself the way I used to but just the thought of going made me feel good. Maybe tomorrow.
Question: is this normal with als? Does it have remission times or is that only MS? I had investigated MS at the begining but some of the symptoms did not line up to what i had. ie hand wasting (thenar muscle) heat making symptoms worst. reflexes not present. I dont know this is all so new to me. Any suggestions would be GREATLY APPRECIATED. Was it the beer that helped me and my nervous system? :mrgreen:
I hope you area all having a good day. In spite of it all the weather here in CA is beautiful it is spring like enough to make any one happy.

Prayers and wishes for your happy outlook one day at a time.
Robin
 

wright

Very helpful member
Joined
Jan 12, 2008
Messages
1,160
Country
US
State
xx
City
xxxx
To Happy

I just private messaged you, so please check. The symptoms that you had that started all of this for you, were most definitely real. I do think that your worry, anxiety and loss of sleep probably contributed to your later symptoms (fatigue, slurred speach, etc.). Your symptoms did start suddenly and are classic for something called: Parsonage-Turner syndrome (also known as brachial neuritis, neuralgic amyotrophy). It is not life-threatening at all . . . but there is no treatment. You simply have to wait for the nerves in your arm to regrow (it is a peripheral disease). Unfortunately, not many docs know about it. A teaching hospital would probably pick-up on it right away. Google it and see what you think. In the meantime, take care.
 

pneu

New member
Joined
Feb 17, 2008
Messages
1
Reason
Learn about ALS
Country
US
State
missouri
City
kansas city
worried

Hello all!

In January I came down with a 102 fever for 2 days and stayed home for a week. The following week I still did not feel well, but, went back to work. I visited the doc and he told me it was a bad virus and it will get better. Two weeks later I went back to the doc with really bad tingling in the back of my legs and also informed him that I had lost some weight in my legs even though I was eating a lot. He told me it was still effects of a virus and I should get better. 3 days later I noticed weakness in my left arm with twitching. I would get twitching all over but rall bad in my left arm. My arm and hand seemed to be getting smaller so 10 days later I went to the doc again. He told me I should be fine but he wanted to run some blood work. This past Friday the 14th he called and told me the blood work looks great! He checked liver, kidney's potasium, in his words everything. I said what about the twitching? He told me I need to go to a Neuro. I googled twitching on line and saw ALS and started to freal out! I am a 29 year old male with a beutiful wife and 2 kids. I feel that my hand is worse everyday ecspeccialy my pinkey. I think I am losing muscle in it and my arm. I can't tell if the weight loss in my legs was muscleand if it was would it show up in blood work that I was losing muscle. I tire real easy after an activity and now am in a state of panic/anxiety over ALS. I am setting an appointment on tomorrow with a Neuro. Does ALS start this fast? I feel weak when I walk and have never this way before.
 

wright

Very helpful member
Joined
Jan 12, 2008
Messages
1,160
Country
US
State
xx
City
xxxx
Hey pneu. That sounds pretty darn fast to be ALS. I think your doc is right: it has something to do with that virus. Seems like too big a coincidence that your symptoms occured shortly after your illness. Relax. I'm sure most everyone on here don't think you have ALS. Take care and go get better.
 

happy

Distinguished member
Joined
Feb 11, 2008
Messages
203
Reason
Learn about ALS
Country
US
State
CA
City
Fair Oaks
Not to worry( too much)

Pneu,
From every thing that i have read ALS and MS does not start with a fever. Those are one of the first questions that they ask. Did the onset of your symptoms begin with fever? This is usually the elimination process for MS and Als. I am not a dr so do do your homework and check up on all areas that are a concern. Also as Wright stated in his post muscle atrophy does not take place that quicly with ALs. Did you have some sort of flu or immunzation or any kind of trauma to your neck or spine. Meningitis is something that would give high fever in an adult also Lack of proper electrolytes can cause muscle cramipng and all kinds of muscle problems. Maybe you could check into a B vitiman defiecency.
Just a thought.
Keep us posted and good luck with the neuro tomorrow.
One thing that was recommended to me was to write everthing down before you go in. It is an awesome way to talk to your doc since we forget the symtoms and the way they make us feel when we are in the presence of medical help. They have a way of making you feel like it's all in your head. Write it down!
Most importantly dont worry it does not sound like ALS.
Sleep well tonight :mrgreen:
Robin
 

Carolan

Active member
Joined
May 17, 2007
Messages
93
Reason
CALS
Country
US
State
TX
City
Dallas
The internet is a mixed blessing. The great thing is that there are forums like this one, where people can share their experiences and find support for what they are going through. Plus, there is so much information on on the web--I don't know how I ever lived without it! But the downside is that the information we find may lead us to a wrong conclusion, especially when it comes to medical issues.

Only a doctor can diagnose you with a disease, and with something as rare and mysterious as ALS, even most doctors can't tell you much about it. Every time we encounter a new doctor (non-neurologists), I have to tell them about my mom's disease because it's just so obscure that they don't remember much about it from medical school.

It's natural to panic when you have symptoms that seem to match up with a horrible, debilitating disease. But keep in mind that some of these symptoms might not even turn out to be what they sound like when you read descriptions of a particular disease. Plus, ALS is a "rule-out" disease, and there are plenty of other curable diseases out there that share symptoms. Your appointments with specialists will focus on trying to find other causes, and ALS is a last resort diagnosis. You will become much more aware of your body during this time, and you will learn more medical terms that you can imagine. There will be frightening days, and some people who are on this board questioning their condition will indeed be diagnosed with a motor neuron disease. But many others won't. The odds are in your favor that something else is going on. Either way, I think that it's important for people to become educated about this disease because awareness will help generate research funding, and if it turns out that you have something else, count yourself lucky.

Good luck with your appointment!
 

happy

Distinguished member
Joined
Feb 11, 2008
Messages
203
Reason
Learn about ALS
Country
US
State
CA
City
Fair Oaks
My Neuro Appt. Yesterday

Well I finally had my appt yesterday, When I got there he was appolled that my GP had not addressed these issues earlier I understand he made a not nice phone call to my dr.
Any way he showed me my mri and pointed out that I have some type of white stuff creeping down my spine he did say it was some sort of infection that was eating away at my mylean. ? He would not say if I had als. He did ALL the neuro function tests and did say that my reflexs were VERY hyper sensitive. He said that there was nothing he could do for me. He is ordering an mri of brain w/wout contrast and also one of those nevere conduction test emv(?) I do not know what does all this mean? Can anyone help.
He precribed me ultram I have never taken it and am not sure why. I have very little pain except for the time the pain pins and needles run down my arm what does ultram do. He also would not give me a release to go back to work for fear that I may hurt my self at work until i get alittle more stablelized.
The fear has driven me right back into full blown alcoholism, I had to go to St Helena in April and before all this started was going on 9 months of soberity. I am failing in every way. I am not being the mother I should either to help my children get throguh all of this . Please tell me what to do. I have already started drinking it is only 9:50 here in ca . Please help me oh and by the way the neuro surgeon has refered me to the nerolgost. I am such a loser I did not want to go out like this.
lost in Orangevale
Robin
 

vmd

Senior member
Joined
Apr 27, 2007
Messages
581
Reason
Other
Country
US
State
idaho
City
N/A
The infection seems to be the cause of your problems. If you belong to AA, then I would contact your sponsor. Can you make it to an AA meeting? I'll keep you in my prayers.
 

happy

Distinguished member
Joined
Feb 11, 2008
Messages
203
Reason
Learn about ALS
Country
US
State
CA
City
Fair Oaks
does it sound like als?

I am calling St Helena rehab center as i type.
Thank you for your quick response. This is the kind of hell on earth I never expected to experience. I am totally at a loss for words.
My heart is unrecoverable.
I love you all you are and have been my personal angels.
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Hi Robin, I am so sorry to hear about your problems. These are serious problems on top of Als, or possible Als? I am so overwhelmed by your post, that I cannot think straight. Dear, you need lots of help. Is your husband and kids home? Let me ask you a question, if you don't mind. I am going to be blunt, and do not be shy to answer. We are here to help. How long have you been drinking? When you drink is it beer, or hard liquor? You really need to stay away from the alcohol, because it is making matters worse. Think about your children. Your illness and alcohol is killing you, and your heavy drinking is killing your children. They don't want for this alcohol to be a contributing factor on top of your illness! I think it's time for me to quit. I need a break, and will say a Prayer for you while I am on break. I am turning the computer over to my husband. I know he is dying to play Texas Hold'em! LOL! Robin, please stay with us. We will try to be of some help if permitted! God bless! My husband says you are in his prayers, too! Later, friend!

Irma

Irma
 

happy

Distinguished member
Joined
Feb 11, 2008
Messages
203
Reason
Learn about ALS
Country
US
State
CA
City
Fair Oaks
My Drinking

I started drinking about 1 week ago and since all this diagonse bull I have been drinking daily.
My doctor called me just a moment a go and said tha tmy blood work came back and the only thing that was abnomal was my potasium level. Weird! Another words she said that my kidneys are tying to tlll me something, WHAT? I have lead such an incrediebly healthly lifestyle this is all so unbelievable to me. Hoiw can my body just be betraying me like this? I just sont get it! The alcolhol is turining on me too. I am tired and sick and depressed.
God i need help bad My whole emothional state is being compromisseed I want ot die. But how.
Everyone elese in my home is acting normal and I feel so lost, I get angry for stupid stuff I have no help no one understands the pain I am in except you guys. I just need to be normal again my life was soooooo good.
Love you all
Robin
 

happy

Distinguished member
Joined
Feb 11, 2008
Messages
203
Reason
Learn about ALS
Country
US
State
CA
City
Fair Oaks
Good Morning Everyone

What a fool I have been. With all the incredible things that are spoken here on a daily basis please, please forgive me for whining and making my situation worse.
I had a somewhat good day yesterday. I woke up in pain in my neck. Between the scapula. It felt like a rock, no energry to really do anything so I slept most of the day. I am sure i can attribute alot of that to the stress that I put myself through.
I have some friends that are coming over today to pray for my healing. I'ts the heart that they care enought to be with me bless there hearts.
My MRI is scheduled for tomorrow. Do you think it will reveal anything? And also I got a call from the neurologst that my Neuro surgeon had put a refferal in to him urgently.
This is all so sereal. One day I feel okay the next I am totally down. I hope you are all going to have a great day. My prayers for your happiness and peace one day at a time.

Robin
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hey Robin- YOU weren't foolish- that was either the alcohol or your illness that was acting up. I hope your visit with your friends goes well, and I hope you get answers soon to what is going on.

One last piece of motherly advice: maybe you can make it to a meeting or call your sponsor today? Just a lottle nudge...:-D
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
State
Alabama
City
Mobile
Robin

This is a hard thing for all of us. PALS or CALS. We just have to be there for one another and take it one day at a time. It is overwhelming. We have a group of wonderful people here, especially the VETERANS! We are all here, unforunately for the same reason. I hope we can make it a little easier for you and all the new members.


Lorie:)
 

wright

Very helpful member
Joined
Jan 12, 2008
Messages
1,160
Country
US
State
xx
City
xxxx
Hey Robin

I just want to start by saying that it doesn't sound like you have ALS (your symptoms aren't consistent with it at all) . . . and if your neuro thought you did, he/she would have mentioned it. Your symptomos are attributed to the problems you are having with your spine. I'm not sure what to make of it, though. Can you call your neuro and ask him/her to be more specific as to what the "white" streak is on your spinal cord. If they are consulting a neurosurgeon, then it sounds as if it is treatable. Hang in there and let us know as soon as you can, what the diagnosis is.
 
Status
Not open for further replies.
Top