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arowand

New member
Joined
May 21, 2016
Messages
1
Reason
Lost a loved one
Country
US
State
Floirda
City
Dade City
Velma’s Journey

Velma Velazquez realized something was wrong, she didn’t know what is was, but she knew that it was affecting her. On September 22, 2012 she began to keep a journal. This is her account, in her words, of the medical treatments that led to the diagnoses of ALS and a few months afterwards. It is meant to give insight into the physical and emotional struggles that the victims of this terrible disease and their loved ones go though. It is hoped that it can provide help and encouragement to others.

9/22/12
My hand is spasming, tingling, numb. Strength is not there
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11/16/12 – Entry Date
11/16/12 Dr. Gonzalez showed & explained xrays. Pinched ,bulging nerves n neck. No surgery necessary. Shots to releive some pain. Arthritis n neck. Small carpal tunnel n right hand. Rx meloxicam?
Sniffles, bit of a stuffy nose n mornings 11/9/12.
10/19/12. 1 day after humira shot on 17th, feeling very tired, nauseas, very sleepy. Sleepy & tired for 2 days after.
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11/29/12
Feet cramping from 4:30 pm on. Left thigh cramped also
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12/08/12
12/6/12 started Welchol powder ard 7:30pm. Bloated, uncomfortable, throat hurts, stomache burns. After eating. Stopped it.
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12/16/12 – Entry Date
11/02/12
Noticed small flashes corner left eye.
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12/21/12
Dr. Rodriguez
Pain mgmt.
Shots in neck.
Said left hand will not improve
Right hand, mild carpal tunnel, same thing. I'm already noticing weakness.
Need to see orthopedic surgeon, Dr. Gray?
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1/5/13- Entry Date
1/2/13 cervical epidural steroid injection. Dizzy, nausea, headache, weak, pain. Night: numbness, tingling, pain in hands & arms intensified.
Have been wobbly, unsteady on feet fit past 2 weeks, starting around middle of December. Hips, legs seem to lock up, hard & unsteady to move. Afraid I'll fall.
1/3: working, dizzy, weak.
1/4: same but worse. Not feeling good at all.
Feeling scared, worried might b something else. Depressed. Fell to knees when got out of car. Had difficulty getting up.
Night: Cried, felt good to do that.
1/5: day time, felt better, still some dizziness but kept busy ard house, helped to keep mind off.
Shot area is swollen. Ice neck, heat lower Mack.
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1/13/15- Entry Date
Week of 1/7/13 neck hurt, thoracic area too. Swollen at injection site. Pain, numbness, cramps intensified n arms, hands. Shoulders hurt too.
Upper body hurt.
1/7/13
Dr. Gray (orthopedics ) said mild carpal tunnel n right hand. He went by what Dr. Gonzalez said. Dr. Gonzales didn't try right hand, am. Only left arm, left side neck, hand.
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1/1713- Entry Date
1/17/13 noticed my left hand wasting away even more, was hurting too. Palm, back of hand. I'm really worried that my other hand will b same.
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1/22/13 – Entry Date
1/17
Dr. Ramirez, pain mgmt. Shot didn't work, next is surgery
1/21
Pain n neck bad. Down into my left arm, hand, up neck , jaw. Arm & hand spasms, numbness, dull pain. Palpitations
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2/13/13
Dr. Cronan sent to pain mngmt. Put a dye n back, see if can pinpoint pinched/bulging problem. Can't see it. Possibly have neurologist do a nerve block.
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3/19/13
Feeling very weak n knees, feet. From waist down. Nauseas. Since 3/18.

12/9/12 @ abt 1:15 am @ a call out. When getting out of car, had hard time standing, legs very stiff. Could hardly move them. Had to tell my brain to walk, to move one foot n front of other. Walked like robot. Felt very wobbly, unsteady on feet. Thighs , knees and calves were very weak.

Downhill from there. Steadily getting worse.
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3/19/13.
Very worried. What's wrong with me? Unsteady on feet. No dizziness, or nausea. Just from waist down Very Unsteady. Feet, toes, sensitive to touch. Hands jerk at any loud noise, involuntarily.
Cramping feet, legs,hands. Mostly feet.
When trying to turn or move in bed my limbs want to curl up & cramp, when stretching too.
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4/1/13 – Entry Date
Had MRI of Brain on 3/26/13. Said neurologist would get results n 3 days. Gave me disc for Doc. Took to doc on 4/1. Doc back on 4/3
God
Plz let the doctors find what's wrong with me please. No matter what it is. I just want to know and deal with it. I can't fight what I don't know. Please give me the courage and strength to keep fighting. And no matter what please help my family to be strong, especially mom. Thank you dear God.
I'm really scared.
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4/20/13 – Entry Date
On 4/17/13 @ around 5:50pm
Dr. Gonzalez (neurologist), after doing a whole body "pincushion" test (nerves, muscles) informed me that I had " Lou Gerhigs" disease. I lost it completely. He told me to call my son. I did & he told Oscar @ ard 6pm. Oscar was very calm & calmed me down. Dr said needed more tests to make sure & that it could b something else. I think he said it so i would stop crying. His eyes got red & he wiped away a tear. Dr said would arrange for spinal tap.
We left. Oscar calmed me & reminded me about what Dr said & not to lose hope & to think positive.
I asked him to tell Art & he did.
Oscar stepped up when I needed him to. I'm proud of him. But also worried about him.
GOD HELP THIS FAMILY, PLEASE.
GOD please help Art. He's not handling it well. I need him too. But i need his strength.
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6/6/13
Oh boy,
I noticed my throat felt a bit thicker since before 5/22/13. My tongue has been spasming for last 2 weeks. Yesterday felt spasms and gag reflex had been slight. Putting keys n teeth causes me to gag . Today is more noticeable. Tongue feels thicker, gag reflex is worse. I'm scared. God give me strength. Calmness, courage.
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6/18/13 – Entry Date
BOMBSHELL
On 4/17/13 at around 6pm Dr. Angel Rodrigeuz-Gonzalez informed me that after doing the needles n muscle tests he determined that I have Lou Gehrigs Disease, ALS. Oscar came in about 6:15 & was told. Oscar helped me calm down.
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8/5/13
Spoke to Gail about wheelchair , hand brace. Will chk on it.
Told her about Urinary tract infection had on 7/27. Saw CVS nurse on 7/28 gave me antibiotics. 1 for 2 days, other for 3 days ( Washington DC).
Told me to c Primary, make sure it's out.
Told her about coordinating services with Christine Bright, services director for ALS clinic
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10/25/13 – Entry Date
9/27/13
ALS clinic
Dr. Vu did face to face Eval for wheelchair.
Therapist did too.
Must submit request before 40 days r will have to redo.
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10/30/13
Spoke to Jamyla @ CareCentrix
Told me Numotion has order & is working on it. I don't need to do anything.
Left msg for Natalie to arrange for PEG
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1/1/14 – Entry Date
12/02/13 peg was put [email protected] general.
12/16 Dr. Vu took out last suture.
12 /12 nurse Maggie tortured me
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Velma Velazquez passed away May 1, 2016, three years and 24 days after being diagnosed with ALS.
 

faithandlove

Distinguished member
Joined
May 22, 2016
Messages
174
Reason
PALS
Diagnosis
06/2016
Country
US
State
NV
City
Reno
I am so sorry for your loss, but I appreciate so much your post. I just got diagnosed last mouth, and I went through two years of tests and doctors making me feel it was in my head.

Reading this post was such an eye opener of the strange things that happened to me too. Like her noticing small flashes in the corner of her left eye. I have small flashes in the corner of my right eye, and never heard of anyone having this.

Then my family will laugh at me and my husband has gotten mad at me for my hands jerking involuntarily for either loud noises or when I get nervous. I can't drive anymore and my husband is a lousy driver. You can imagine how many times my hands jerk up when he drives. He knows now that I have no control over it.

I'm sorry you lost Velma to ALS so soon. She was a lucky lady to have a loving family.
 

scaredwifetx

Very helpful member
Forum Supporter
Joined
Jul 25, 2015
Messages
1,573
Reason
CALS
Diagnosis
07/2015
Country
US
State
tx
City
Dallas
I am so sorry for the loss but through you she is still able to help others. Thanks for sharing her thoughts. Seeing a PALS words and feelings is a reminder to us all how scary it can be. Her words will help me to remember how tough this is on Steve.

Thank you being a incredibly kind and thoughtful PALS. My thoughts are with you.
 
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