Old 06-17-2007, 08:59 AM #31 (permalink)
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August 05, Playa Guiones Costa Rica. I was surfing with a buddy and I was having problems getting to me feet. First time it ever happened in 27 tears of surfing. About a month later I developed a slur and started getting weird cramps in my neck. My first Neuro ordered MRI/MRA, EMG, blood work and found nothing. Slur was getting worse and I noticed the muscles in my arms and back were twitching. It was my ENT that suggested a different neuro. The original didn't have a clue and said there was nothing wrong with me. My ENT noticed my tongue was vasciculating and suggested his friend at Baylor college of medicine here in Houston. Another round of MRI, EMG and biopsy. 1 year later, August 30 2006, my 44th birthday I was officially DX with ALS. ANyone see the irony?

My anger and frustration grows daily. Still pretty healthy but there are noticeable changes. Talking is very difficult, some atrophy in my left foot, cramps in my hands and arms. I'll probably be forced to retire w/i the year from a career I love. Going to pack my surfboards and head to Costa Rica for as long as I can.
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Old 06-17-2007, 03:07 PM #32 (permalink)
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Hey Wes. Welcome but sorry you have to be here. Two things you learn here. Do what you can while you still can and keep a positive attitude. If you can do that it will help you cope. It's not easy all the time but it can be done. We're here for you.
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Old 06-18-2007, 01:01 PM #33 (permalink)
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1) symptoms prior to diagnosed - hand weakness, twitching on arms, hand, shoulders, weakness in shoulders
2) als suspect from the start. First local neuro done EMG/nerve conduction test, all different kinds of blood tests to rule out other diseases. After all blood work came back negative, was referred to ALS clinic in Morgantown, WV and was given a definitely diagnosed of ALS. Went for a 2nd opinion in Pittsburg, PA - same diagnosed. Based on emg/nerve conduction and symptoms.
3)no
4) pre diagnosed - about 3 or 4. Post diagnosed - we go to the als clinic every 4 months
5) Everyone has been very supportive. Most of our friends/family had never heard of ALS so we've had to give lots of details and explanations.
6) it has brought us closer together as a family. Not a one of us have a promise of tomorrow, so we should never put off doing important things. But, once you're given a diagnosed of a terminal illness, you start doing all the things you put off.
7) arms/shoulders/hands are weak. LOTS of twitching. lot less stamina than before. Some trouble swallowing
10) treatments - organic foods, herbs and vitamins. POSTIVE attitude.
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Old 06-18-2007, 02:13 PM #34 (permalink)
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posting for husband:

1. Symptoms prior to diagnosed-
Clumsiness: broke both feet at the same time, six months later broke leg
Swallowing difficulty: hospitalized - could not swallow saliva
Twitching beginning in left hand/forearm
Weakness in left hand
Slurred speech at times

2. ALS suspected and diagnosed from the start.

3. Always told it was ALS.

4. General Practitioner suspected a neurological problem/recommended a neurologist
First neurologist diagnosed ALS
Second neuro confirmed ALS
ALS Clinic confirmed ALS

5. Customers complained that he sounded drunk over the phone.
Co-workers began to have difficulty understanding his speech.
His family felt there was nothing seriously wrong with him.

6. This diagnosed has been devastating to us as immediate family. The range of emotions that we as husband and wife go thru every day while trying to still live our life as normally as possible is difficult to describe. Trying to plan ahead for whatever may be around the corner is also difficult. The long term dreams we may have had certainly have changed.

7. Dxd with Bulbar onset.

8. Concurrent symptoms include pain with spasms, recurrent pain in right knee, cramps, twitching which has progressed to other side of body in upper limbs - do not take anything for these symptoms. Deep creases in face with excessive oiliness, increased saliva production, muscle atrophy in upper limbs and trunk/butt - do not take anything for these symptoms. Weight loss - gained it back by eating higher fat foods. Sleeplessness - taking Ambien to treat this (works great, just don't take it and try to stay awake or I guarantee you will act like a lunatic). Swallowing and chewing issues - don't take anything for these. Gaited walk - not using cane yet.

Would like to add that if you over exert yourself, you will pay for it!

thx

CJ
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Old 09-27-2007, 11:45 PM #35 (permalink)
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1) Symptomps prior to Dx
I started with asthma like symptoms in May 05. During the summer I started having problems swallowing my meds I still thought allergies. By Sept the left side of my face was drooping. My PC thought I had Bells Palsy. By Jan 06 I was getting hard to understand. By may I was no longer able to talk.

2) Were you mis-diag or was is suspected ALS from start
Bells Palsy

3) Were you ever told, by the ALS clinic or the spec. that what you have "IS NOT" Als
The neuro that I was referred to told us it was not Als and if my MRI came back normal not to worry about it.

4) Vistits with Doctors (the important ones), pre diagnosed and post diagnosed
PC several visits, ear, nose and throat specilists 2 visits, neuro 2 visits and then she referred me to an ALS clinic where I got a Dx and have been going to since.

5) What people around you (friends / family / co workers) would tell you when you started having problems...i.e. did they think you were crazy...etc.
No they were all very supportive. My brother-in-law passed away from ALS 5 years prior to my diagnosis. We grew up together he was my brothers best friend and his sister was mine so we all spent a lot of time together.

6) How did it affect your home life / marriage.
My family is all split up because of my illness. We lost insurance in March 06 and the only way I could get insurance was for me to take our daughters and leave. Right now I am at my mothers and my husband is here now, but my 17 year old is staying with friends so she can stay in her school and my 14 year old is living in yet another town with my oldest daughter cause there is not enough room at grandmas. We are in the process of looking for a house that will work for me and moving the girls back home.
7) What type do you have (Bulbar / LImb)
Bulba onset

What are the concurrent symtopms and are there any unusual ALS Sypmtoms, like pain, numbmess, tongue hurting, chills, etc etc...
trouble swallowing, no voice, In a powerchair fulltime I can walk a few steps with a walker. and am losing use of my left arm. I have a lot of pain in my hips, sholders and neck. My tongue only hurts because I bite it every time I sneeze.

9) How crazy you think i am....LOL....Just joking on this one...gotta keep up the humor, but feel free to comment..
I don't know you well enough to comment on this one but I think a little craziness helps us get through this.

10) Treatments, when started and how they have worked. Should relate the treatement to symptoms if possible and their relief or failure.
Rilutek Oct 06 don't know if it is helping or not. Baclofin Sept 06 helped to begin with but I think I probably need to increase it. Zoloft sept 06 for depression, it helps. feeding tube nov 06. Leg braces Jan 07. Merc, II for talking may 07 power chair June 07
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Old 12-09-2010, 09:45 AM #36 (permalink)
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I realize these posts are rather dated but wanted to add my symptoms list somewhere for reference. This seems like a good place I do not yet have a DX

1) Symptomps prior to Dx

March 2010 : I woke up one morning feeling ill and very tired-didn't sleep well during the night, thought I was coming down with strep as my daughter was just getting over it. That evening I noticed by face was droopy on one side. It was gone by morning, went to work..it came back and I was sweating profusely around my torso and having sharp shooting pains in my back, neck and head. Went to the ER..diagnosed with Bells Palsy sent home with steroids and anti viral meds but the doc on duty wanted me to return the next day and see a particular doctor who would then speak to someone at a larger facility about the pains I was experiencing. Went back waited 8 hours and didn't even get to see the doc he wanted me to see and the one I did see said he would have diagnosed me with Bells and I had to worry about my eye getting stuck open ?!? went home exhausted. Next day the first ER doc I saw tracked me down at my mothers apologized for how I was treated when I had returned and had scheduled a cat scan for me. Went to the scan, on the way home had metallic taste in my mouth and was very happy so much so that I mentioned it to my mother~aura maybe~ later on that evening as I was sitting chatting with my bf I was all of a sudden unable to speak though I knew what I wanted to say and began to sweat profusely around my torso yet again. I was taking by ambulance to the ER. On the way I went in between being able to talk and not ,and my trunk began to convulse,and my lips were smacking when I could speak. I was admitted and stayed for 5 days -they did and EEG MRI and numerous blood tests-and came up with nothing. I was to see a movement specialist because of the smacking that was still happening and slight tremor in my left arm. This lasted about 8 weeks afterward. I went off the steroids and antiviral meds and was put on anti-seizure medication. I was told I did not have diabetes, heart disease or a stroke though they did see a white patch on my brain they told me it was normal. The Neuro on staff said I did not have bells palsy.

2) Were you mis-diag or was is suspected ALS from start

misdiagnoses of Bells Palsy

3) Were you ever told, by the ALS clinic or the spec. that what you have "IS NOT" Als

No though the movement specialist I saw there after told me I did not have parkinson's or huntingtons and she didn't "think" I had MS. She also told me to get off the anti seizure meds.

4) Vistits with Doctors (the important ones), pre diagnosed and post diagnosed

Movement specialist-blamed it on stress told me she would refer me to a psychiatrist never received a referral. Went off work for 7 months.
(optometrist) discovered pressure in eye is borderline and ocular nerve is larger than normal-going back for further testing.

5) What people around you (friends / family / co workers) would tell you when you started having problems...i.e. did they think you were crazy...etc.

They were worried at first now it seems some of them don't know what to think because they figure the doctors would have figured it out by now.

6) How did it affect your home life / marriage.

Hard to get support

7) What type do you have (Bulbar / LImb)
NA

What are the concurrent symtopms and are there any unusual ALS Sypmtoms, like pain, numbmess, tongue hurting, chills, etc etc...

since the episode> I have had two more similar occasions though not as severe where I am not able to speak. I have trouble forming my words, urinary incontinence, pain in limbs and extremities (sharp) numbing, tingling, trouble staying asleep (dream all the time) muscle twitching, blurry vision, pain in ribcage, back of neck and head. Weakness in arms ( have trouble lifting my shirt over my head). Snapping joints, ringing ears, droopy eyebrow and smile on right side (comes and goes) my mouth pulls down to the left on occasion causes drooling. Vertigo type dizzy episodes. Blood in mouth what I believe are Posterior nose bleeds (new symptom)

9) How crazy you think i am....LOL....Just joking on this one...gotta keep up the humor, but feel free to comment..

Not at all crazy

10) Treatments, when started and how they have worked. Should relate the treatment to symptoms if possible and their relief or failure.

Lyrica-for nerve pain-stopped taking it when it wasn't working and I discovered they didn't even know how it works-I don't feel right taking something when I don't even know what is wrong with me personally...maybe if it had of offered relief I would have felt differently

Last edited by Lovely Laura : 12-09-2010 at 09:52 AM
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Old 12-10-2010, 08:40 AM #37 (permalink)
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Default Re: Survey - ALS Type and Sympt. - Dx - Progression

This if for my brother who passed away due to ALS and to the best of my knowledge.

1) Originally foot drop. Eventually near paralysis of the entire body. My brother only got diagnosed 3 months before he passed away.
(he saw a neuro for a year but apparently not a good neuro)
2) The doctor left it open at first but then had my brother convinced later it was Mysthenia Gravis. Only when he was nearly paralyzed
did he go to the MAYO in Jax and get the Dx. They hooked some machine up to him at some point in the hospital and did something
that actually replaced the plasma in his blood cells on a hunch it could be something else, don't remember what that was.
3) Don't know what his Neuro mentioned about ALS
4) Not sure what you are asking here but he went to the Neuro once a month and was hospitalized 3 times before he was diagnosed
the 4th time he was hospitalized. Post treatment was pretty much end of life treatment at that point. The doctors told him they would
normally tell someone who was just Dx with ALS what to expect but he was already at the last stage.
5) At first my mother questioned his sincerity. He was out of work and on unemployment and getting on her nerves and she thought his symptoms might be exaggerated so he could avoid going back to work. I lived close by and I could see a steady and obvious decline so
I told her that in no way could he be faking these things.
6) How does ALS affect any homelife? As time went on he became more miserable, more depressed and harder for us to take care of. The frustration we felt wasn't always easy to hide and only made him feel worse. It did seem to bring him closer to a girl he met on the internet
and for the last 3 months of his life he moved to Arkansas and spent his final days with her. Though from some postings on facebook you
could tell the reality of taking care of someone with ALS really hit her. But my mother did go to visit and said the girl (who married him 2 months before died) was taking good care of him and he really seemed happy.
7) he had the type that started in his legs, speaking went last.
9) hopefully not too crazy, this could help someone else. I've thought of trying to do something similar to help people, those who are scared they have ALS and those who have been Dx (though an Neuro should do a better job of telling them what to expect)
10) He got put on the one and only drug that helps minimally and it didn't help him much. Then again he was very late in ALS when he
started taking that drug.
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Old 12-11-2010, 03:23 PM #38 (permalink)
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Default Re: ALS Survey - ALS Type and Sympt. - ALS diagnosis - Progression

I think what ur doing is great good luck with it, sometimes I noticed some sketisim here but don't mind it
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