Eric Jensen
Forum Replies Created
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I, too, was affected by the hurricane and I say, yes, my mobility and energy level were worse.
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Lots of prednisone
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Thank you Dagmar
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I am super slow and now I’ve gained 30lbs. In 2 months. Is this normal?
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I fell at a church camp and went home. I had pain from the fall and so I did PT, to no avail. I went to my PCP who found a rash so he sent me to Dermatology. He biopsied it and found elevated CPK but no skin issue. On to the Rheumatologists. Extensive work up to me seeing the results and thinking that it may be ALS. No pain now, but drop foot right side. Now to Orthopedics. Waited bc MRI and orthopedics didn’t agree. So I waited. Pain increased and now I have zero patellar reflex on drop foot side. On to Neurosurgery. Did laminectomy and fusion S1-L4. Now PT again and not to my surprise, I didn’t get better. After 5 neurologists, I’m told ALS. I knew it. I’m an old hospice nurse btw.
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Unfortunately, I had a horrible experience with the gastrointestinal doctor. He placed a PEG tube under general anesthesia. We didn’t get care instructions or how too information, before leaving the surgery center. Unsuccessful at 5 tries, I made an appointment with the physician. He said it must not be working based on my previous gastrointestinal surgery. He then pulled the PEG tube in the office and patched it with a 4×4.
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I am from Florida, US.
I was diagnosed in 2021.
I am on Riluzole only.
I love spending time with my grandson, whom we are raising.
Favorite motto : You miss 💯 of the shots you don’t take.
The best place I’ve visited is Dahlonega, Georgia in the US. I could feel God there.
Thank you for creating this group.
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I had drop foot, 3/2020. Since, I was told by three doctors that I don’t have any MND, before diagnosis . I can still walk about 20 yards. Things are starting to accelerate, as I am noticing that my whole body is loosing strength. Oh my favorite. Hospice dropped me because I’m not dying fast enough.
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I have Humana Medicare Advantage Plan and Radicava is part of their formulary. The copay is very high but there are grants out there that can help.
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Hand weakness. I didn’t notice because I would just adapt to whatever my hands wouldn’t do. Almost in denial. Now, I wish I would have done hand strengthening this whole time. The inability to use my hands is up there with people not understanding my speech.
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Subjective, subjective, subjective tests and assessments. Neurologists don’t trust what other neurologists do or say.
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See a physician with your complaint. Better that.
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Mute is fine. Just kidding. I wish that they would share their thoughts on what may happen next. I would also like to be included in the interdisciplinary meeting.
In reference to the ALSFRS, it is subjective as is neuroscience.
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“Fighting with neurologists; a patients perspective”
“EMG – “The Electro positive Guy.””
“Thinner 2,” by Stephen King
“ALS – A Lotta Sh$$”
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My wife has found on VRBO many vacation rentals that are owned by people with power chairs.
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Do, what you can now before you can’t.
Do, be your own advocate. Speak up and stand up for your needs.
Do, enjoy each day!
Do, research. As Dagmar says. Use reliable sources such as NIH.
Do, be strong, because YOU ARE!
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Thank you Andrea for sharing. I am so sorry for your husband.
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My grandson, who is four, is learning the ways of the world. He has learned that whenever something is needed, we go to the _____ store. As he watched me attempting to walk, he said, “Papa. We need to go to the Legs Store…” I love his innocence.
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Wear them if you want to walk further! They work!
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Myth:
you can only “present,” your symptoms that match ALS and only ALS.
Truth:
Many times, there is underlying disease or conditions that will have nothing to do with ALS
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I have an EMG and then an in person, visit follow up. I am also working on getting my BiPap. I am ready to have a good night’s sleep.
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Yes! 3/2020
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To funny! Great sense of humor for you both!