- Sex: F
- Data Quality: 0 stars
- ALS: 6 yrs
- Ventilator Wheelchair Feeding tube
- Bulbar: moderate
- Arms: severe
- Chest: moderate
- Legs: moderate
- Female, 56 years
- Grand Island, NE
- Primary Condition
- First symptom
I have 4 children between us 12 grandchildren, bunches of wonderful neices nephews! I have 6 siblings, my dad still living with Dementia, my mom died at 59 from breast cancer, one sister with MS. I love and depend on the Lord and hope and pray for healing for all.
Please see long bio for more detailed information.
History(really long - I'm sorry - some of earlier dates were wrong):
X-ray being the new miracle in early sixties, our family had many allergies and went to an allergy treatment center where they treated me with 2 "x-ray treatments" when I was 8 or 9 for severe allergies. I sat in front of an xray machine, they "treated" my neck and chest.
Had severe endometriosis resulting in 3 abdominal surgeries. The first at 24 was a 4 hour surgery, the final two just as complex. My surgeon put me on 8x the normal dose (at that time) and asked to write about my case in a medical journal. Couldn't tolerate the med.
20 some years ago - noted anytime I would walk any distance, would feel like a popcorn popper was going off in my legs. Believed it to be a vascular response of some type to varicose veins but years later that was ruled out. Those symptoms have never quit.
In 1991 I had an abd surgery, within a few months had thyroidectomy for goiter with "hot and cold nodules". Right after this time started having episodes of sudden onsets of weakness, drooling, slurred speech, and slow movement of my eyes and happened multiple times a day. I had alot of weight loss, but at first thought these symptoms appeared to come on after eating.
Had CTs, etc. to R/O possible causes of the neuro sx, all tests negative except elevated ionized calcium which the docs thought to be indicative of bone mets along with other symptoms. Over three year period, cont. having sx. no further symptoms. Had high consumption of diet sodas (I drank about 12 within 24 hour period trying to stay away from sugar) and felt the Lord impress my heart to stop drinking the soda - within short time alot of my symptoms disappeared and it seemed around a few weeks later all sx were gone.
In 2002 - a planned surgery but I also had been complaining of feeling like my thyroid was growing back for some time found a doc who believed me and sure enough also looked suspicious, back to surgery within a couple months and had a small thyroid malignancy. Radioactive iodine for treatment which made me extremely ill.
Shortly after started more complex sx, imbalance, extreme fatigue, muscle cramping, dx'd with fibromyalgia about 2003. Also told severe osteoarthritis, degen disc disease and C4-5 disc bulge. I also contracted a severe respiratory infection that caused shortness of breath on exertion for the next two years along with that I had symptoms of forehead, eyelids drooping for short periods espcially thought might be Myasthenia. Sx kept getting worse, weakness overall.
2005 Fuch's disease (affects corneas).
2006 osteopenia had advanced to osteoporosis, dx vit D deficiency.
2006 biopsy of tissue results read "scleredema" - haven't had second opinion.
Believe true ALS symptoms started spring 2007 (after knowing ALS more, think this may have been the beginning) began having symptoms of frozen shoulder and weak arms.
2007, late summer started riding a "gentle" horse for therapy just to make me feel better. Had been surprised that when I started riding a horse, thinking (was told by owners) this horse so gentle tiny children ride it - but I had so much weakness in my upper body I could never get myself on it I always needed someone to push me up. Had horsing acc Oct 1, 2007 hitting my head on a fencepost and landed on rt shoulder breaking it free.
Dec 2007 had tremendous stress at work, went to bed one night and felt like I'd had a stroke - next morning had fine motor skills deficit lft hand. However, the symptoms of def just kept progressing gradually after that, muscle wasting, weakness. etc. My right hand started late spring, still thought related to shoulder and/or neck. CAT Scan, MRI, not stroke.
Neurologist thought may have seronegative myasthenia gravis which could live normal lifespan, have meds to bring into submission.
Jan 2008 or so started having weakness right arm, pain, since early 2008 which I realized later sx of frozen shoulder. Horsing acc healed the right arm problem AND another MD had thought connective tissue disorder. SOO all could be explained away.
Late summer seemed like I noticed my wave looked a little funny with my left hand but blew it off. Timeframes are difficult when trying to think back. Quirky stuff.
2008 ultrasound revealed marked fatty liver.
2008 Right jaw cladication, rt salivary gland pain with referring nerve pain, mild - severe at times.
MAYO Dx'd MND/clinical probable ALS late Oct 2008 symptoms within 2 weeks progressed so much my local neuro and family practice doc diagnosed definitive ALS. We were not expecting the brutal reality of ALS. Were thinking MS or MG.
Over my adult lifetime have had at least 20 CT's prior to modern med realizing the radiation risk and probably 8 MRI's. Multiple abd problems.
Dec 2008 ablation for Supraventricular Tachycardia because intolerant of betablockers and calcium channel blockers.
Definitely have an autoimmune problem. ManyIf I get any sutures, my body spits them out and end up trying to heal a wound that takes forever. If I have an allergic reaction to a new makeup my eyes become inflamed and bright red for days. Just to name a couple of weird responses!
Hope this helps someone. I will get dates straightened out on sx and tx as soon as I can.
IF anyone has made it through all of this, I'm surprised!
See why it took me so long to complete this?
- Profile Activity
- 13,931 Views