Old 09-06-2006, 10:36 PM #1 (permalink)
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Default OK Can you give me your thoughts?

I am sorry to ask because I am sure you have heard plenty of these questions and are tired of them. Can people tell how they progressed from the day they new something was wrong until they were diagnosed? I think it would help a lot of people who may be scared and just needing to know. I have not been diagnosed with anything. I know I have something. I have had twitches and slow bowels for years. I have twitches everywhere. Arms, legs, stomach, face, etc. I have had severe joint pains and bone pains. Especially on the upper left shoulder. I am a 34YO man who is in active and good physical shape. My left arm has felt heavy the past couple of days and I have had a lump in my throat the passed couple of days. My throat was hoarse a little today because of my coughing from the lump(I think) and my left shoulder joint hurts bad. My left arm just kind of feels numb. Anyway, I have been to a Rheumotologist and nothing found, I am going to the second round of Neuro and so far nothing. My curious feelings are the lump, the left arm numbness, shortness of breath, and I have a feeling in my brain that comes over me on random sides. It feels like the particular area where it hits is being wrapped in a suran wrap of tingling. Anyone have any feelings like this or ideas to ease my mind. Please understand I am not trying to bother you or offend anyone. Just needing support. Thanks so much,
Bubba
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Old 09-07-2006, 03:09 AM #2 (permalink)
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Smile Hi

Bubba,

I've got signs also, but not yet diagnosed. I saw something on a fairly official ALS site that stated that the 'average' time from onset of symptoms to a definitive diagnosis of ALS was 2 years. Keep in mind that there are lots of different things that can explain symptoms, and it is best not to jump to conclusions. I admit that I did so I won't fault anyone for same - it's a very scary illness and I discovered that I am very afraid of dying. Try as best you can to get on with your life while getting the symptoms properly diagnosed, think positive and try to visualize that you are well.

I for one hope that you do not have it Bubba, take care .......
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Old 09-07-2006, 04:54 AM #3 (permalink)
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Hi Fellows!

I am sorry that you are having symptoms. We found that the testing phases were harder than dealing with the illness. The waiting, the uncertainties, the fears. This is such a difficult disease to diagnose because the diagnosis is one of elimination.

I am a firm believer in holistic care at times. In fact, often holistic doctors can help with all kinds of symptoms by using good nutrition and other natural treatments. I am not saying this to discount our regular doctors, but sometimes the holistic approach works. I have seen in happen with other medical problems.

I can understand the fears that go with illness and mortality. They are very real.

I am enclosing an inspirational poem that I copied. I copy many poems and sayings and save them in a folder. They help.

________________________________________ _____________________________

ALWAYS CREATE YOUR OWN DREAMS
AND LIVE LIFE TO THE FULLEST


Dreams can come true if you take the time to think
about what you want in life.

Get to know yourself
Find out who you are
Choose your goals carefully
Be honest with yourself
Always believe in yourself.

Find many interests and pursue them
Find out what is important to you
Find out what you are good at
Don't be afraid to make mistakes
Work hard to achieve successes.

When things are not going right.......
just try harder
Give yourself freedom
to try out new things
Laugh and have a good time.

Open yourself up to love
Take part in the beauty of nature
Be appreciative of all you have.

Help those less fortunate than you
Work towards peace in the world
Live life to the fullest
Create your own dreams and
follow them until they are a reality.


----- Susan Polis Schutz
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Old 09-07-2006, 08:52 AM #4 (permalink)
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Smile Hi Bubba welcome to the forum

Hey man you are not bothering anyone that is what we are here for, just ask any questions and we will all try to give you the support you need.

My first thought is has your doctor done an EMG on you yet? This will tell a lot about your nerve activity, if not I would ask for one to be done. Speaking of the brain tingles, yes I have had them from time to time and never thought to tie it in with ALS, just thought I had a crazy brain, ha ha.... I do however have mnd/ALS and I had symptoms of muscle spasms for over 2 years before I found a neurologist who would do the test that were necessary to DX me as ALS. Several other regular docs thought I might have it but could not say for sure, so one referred me to neurologist who gave me the DX on May 11, 2006.

I hope you do not have this illness, but whether you do or not we are here anytime you have a question. God Bless and best of luck with the DX.

God Bless
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Old 09-07-2006, 09:51 AM #5 (permalink)
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Hey bubba. Welcome to the site. Have you had that shoulder checked for a torn rotator cuff? Bone pain is not a usual sign of ALS and the pain you are describing sounds like my brother in law when he tore his rotator. We're not doctors here but have seen a little and your worries may be unfounded. Not sure about the lump but I don't recall anyone specifically saying they had a lump in their throat either. There are a bunch of different things that could be going on. Don't start making out your will yet. AL.
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Old 09-07-2006, 09:52 AM #6 (permalink)
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Hi Big AL!

Now that you mention the EMG tests, that is likely what my husband had 4 times, and they were still inconclusive. Actually, he had the last one in Toronto, when we went for a second opinion in April 2004, and my husband had to actually tell them to STOP because he had had enough of the shocks. However, they are part of the diagnosis.

As for the muscle and brain twitches, my husband did not have those. That is another reason that he was hard to diagnose. Very atypical symptoms for ALS. His main symptoms were arm weakness, one and then the other, and then legs. The worst part was the falling down, and that happened quite often. He progressed rapidly, but many people don't.

This is such a strange disease because everyone has such varied symptoms.

Like you, I hope that Bubba does not have ALS, but either way, this is a great place to ask questions and share fears.

Peace!

Pat
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Old 09-07-2006, 10:04 AM #7 (permalink)
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Default big business.............

One more thing, Bubba.

Have you had a CBC & ESR?

Also complete chemistry screening?

These are all very simple blood tests.

My husband went to the doctor with a sore shoulder with restricted movement. the doctor gave him muscle relaxers and pain killers. I called the doctor back (not our regular doctor, and I DEMANDED blood tests.) It is a good thing that I did, because the CBC revealed that he had a low hemoglobin. Very unusual for my husband.

Anyway, 2-3 months later, we finally got in to see a hematologist, and he did a bone marrow in his office. That was in April of 2003. The hematologist suggested lymphoma, but we did not get more tests done until July 2003, 3 months later.

Once he was diagnosed with Mantle Cell Lymphoma and he got into Cancer Care in Winnipeg, we never looked back.

You likely need to keep squacking if you know that something is very wrong. Don't give up. The doctors have the ability to refer you to specialists, so keep nagging them.

Let us know.

And guess what, our money does not go to doctors and nurses, it goes to administration. Health care is no longer about patients, it is about BIG BUSINESS.

Keep nagging, and best of luck!

Pat
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Old 09-07-2006, 11:36 AM #8 (permalink)
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Thank you guys for such encouragement. My mom died when I was young and I have three small children. I just do not want my babies to go through what I went through. I have not had a EMG. I have had an MRI of the shoulder, spine, and Brain, a CT of the chest/stomach and brain, and Blood tests and chest xrays. THe Neuro did blood tests and so has my doctor and a Rheumatologist. I am hoping for a diagnosis of Wussitis. The feelings on my brain make me nervous and I am constantly checking myself for other indicators. I am sure everyone here has the same concerns and I hate to bother people with my issues. I am a very friendly and outgoing person but when it comes to me, I would never ask anyone to help me do anything. I guess I am just going to follow through the doctors again and what it is it is. Does Atrophy help or do you look down one day and your muscle is missing? Is it gradual or boom? With atrophy is there weakness? Boy I love internet forums. We still have a lot of good people in this world.
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Old 09-07-2006, 01:34 PM #9 (permalink)
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When the muscles atrophy it is usually a gradual process. As the muscle fades so does the strength. Slowly but surely, usually. Sometimes it will stop or plateau for a while. No one knows why or for how long. Everybody is different with ALS but similar if you can grasp that concept. Not a lot of fun but we try to make the best of it here. AL.
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Old 09-11-2006, 12:26 AM #10 (permalink)
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Smile bubba

bubba I have the head tingling as you mentioned. different areas of the head at times. I also have cramping of the feet and hands and that lump in your throat you mentioned. the lump is worse in the morning but i drink green tea and i usually cough up the green flem shortly after drinking the tea and i feel better. i know doesn't sound too good but it works. i too have not been diagnosed with anything and my symptoms started jan. 15th,2004. first symptoms were arm and neck pain after exercise, knees buckling, very lightheaded when bending down, stubbing right foot into ground, fatigue, pulling of muscles in upper chest, not my heart had it checked out twice. my tongue gets white as the day goes on, the more i do the worse the tongue gets. i now have occassional twitches of muscles throughout the day, weakness of leg muscles just above the knee, and arm pain from too much activity. had a emg at a als clinic 6 months ago and told me i had symptoms of als but nerve and muscle tests say no. i do strengthening exercises for my legs, stretch a lot, still walk and swim, coach hockey and enjoy life best i can. I am not going back to any doctor's until i have total disability in a limb. waste of time otherwise as i have had all blood tests done possible, cat scan on head, mri on neck, cat scan on lower back. all this started after a fall on my back. i have degenerative disc disease, scoliosis, that's about it and am 48 years old. after 33 months i gave up on doctors and just got on with my life. have good days and bad but if i can walk it is a good day. hope this helps.


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Old 09-13-2006, 12:53 AM #11 (permalink)
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Default atrophy

AL, With me I noticed all my muscles were hanging down loosely from my limbs and even my face in just a few days? It's like someone let all the air out of my muscles one day! And maybe I just didn't notice it before? I don't think so, not something that weird!Anyway it's strange how everyone is so different with this disease. And weakness has not progressed much at all in me since Jan. even though my fasciculations are fading somewhat away now. Maybe though, I'm just on a plateau, it is a crazy illness! Barry
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