Diagnosed today

[4tloml]

Hoping you get some good news at your appt. Maybe "weird presentation" = slow progression? Wishing you the best.

 

[MaxEidswick]

fingers-crossed!

 

[2siblingsALS]

I had a very thorough neurologic examination by both the nurse practitioner and the ALS specialist as well as a very comprehensive nerve and muscle conduction study when we went to the University of Southern Florida.
No question about it, I do have ALS.
Even though I already knew that I did hearing it from Dr. Vu sent me into a tailspin of depression. I hadn't felt so depressed since right after my brother died of ALS.
Next month I will start attending a multidisciplinary ALS clinic. It meets twice a month for so many weeks then every three months.
I will be seen by a doctor, a nutritionist, a physical therapist and a psychologist.
A few days ago I received a notice in the mail that my first appointment is January 16th.
When I called to confirm I left a message. I was supposed to get a prescription to start PT if they couldn't get me in the clinic in December. I am waiting to hear about that.
In the meantime I had four injections on both sides of my spine the Tuesday before Thanksgiving. That has helped with the pain in the back but now I have to see an orthopedist about the right knee. I see him next Wednesday.
Next Tuesday I see the neurosurgeon to discuss the next stage, burning the nerves in the lower back.
No one would do anything about the pain in the back and down the leg until they figured out that I have ALS. I spent eight months limping and suffering. I was told that
"No one died of back pain". Said by someone who obviously hasn't had severe back pain!
Anyone else struggling with the holidays? I'd like to start a new thread about ALS and the holidays but I don't remember how to do that.

 

[Atsugi]

Sorry to hear this news.

Depression is totally treatable. No need to let that pile on top of everything else. It's terrible that they didn't treat your back pain.

If it were me, I'd have a pulmonologist find my baselines so I could track my progression.

Good luck getting rid of that back pain.

 

[mpnatx]

No one would do anything about the pain in the back and down the leg until they figured out that I have ALS. I spent eight months limping and suffering. I was told that
"No one died of back pain". Said by someone who obviously hasn't had severe back pain!
Anyone else struggling with the holidays? I'd like to start a new thread about ALS and the holidays but I don't remember how to do that.

I had the same situation. I have had sciatica for thirty years. I needed relief, so my family Dr sent me to an orthopedic surgeon. He wanted to operate immediately.

I said no! And went to get a second opinion from a Neruo surgeon who upon examinination found some odd results.

That's when he sent me to a nerologist and the rest is history.

Now I'm back to the neuro surgeon and have an MRI scheduled for tomorrow. He also said he didn't want to address my back issues until the diagnosis was confirmed.

At his point, I'd be happy just taking pain medication for some relief. I don't want surgery....Again. Had a disc removed about 20 years ago.

Back pain is miserable on top of everything else!

Hope you feel better,
Marty

 

[2siblingsALS]

Monday I saw our primary physician. He has treated several ALS patients in his years of practice. I had a "cheat sheet" with things like pneumococal pneumonia vaccine, getting established with a pulmonologist, talking about PEG tubes, etc.
He knows me so told me not to get ahead of myself. We will deal with things as they arise.
I did get the vaccine.
He told me he was so sorry about the diagnosis and gave me a hug.
On Tuesday I saw the neurosurgeon. I had the eight injections, four on each side of the lower back on the Tuesday before Thanksgiving. That helped so much with the sciatica.
Now I am going to have the nerves burned. That gives longer lasting relief.
I am waiting for a phone call to set that up at the day surgery center.
Today I saw our orthopedist. I had x-rays of both knees. They both have been painful but especially the right one.
Good ol' arthritis! I had an injection in each knee. He is going to have a special topical medication made for me. I will get it by mail.
He showed me some exercises to do. I go back in March.
He asked if I had noticed foot drop. He said that if I do to call him. He can get me a foot drop brace.
Tomorrow I start PT at home. Last Thursday a male home health nurse came to our home. He got the PT set up. Dr. Vu, the ALS specialist, ordered it as I can't get into the ALS clinic until January 16th.
PT for ALS patients includes passive resistance, flexibility, safety and energy conservation.
I really need to work on the last one. I used to be human "Energizer Bunny". I can't do that any more. My legs get weak. I feel wiped out.
Did you know that the ursolic acid in apple peels helps prevent muscle wasting? I stopped at a natural food store today. I can get ursolic acid in a rosemary tea that they carry but were out of.
That's all of my news for now. Thank you for your posts and book recommendations.

 

[2siblingsALS]

Cramping and fasiculations

Something new and painful has reared its ugly head. Out of nowhere I experienced very strong, painful cramps in the back of my thighs, especially on the right side. The fasiculations in those areas just keep twitching, longer than ever before.
It sometimes feels like every muscle in my body is on the verge of cramping.
I had my first home PT session last Thursday. My husband and I attended my Sunday School class's Christmas party at church Saturday evening. I baked cookies for a cookie exchange yesterday and did my exercises. Nothing that should have brought this on.
Check out the website ALSfrombothsides.org. A neuroscience nurse and ALS patient for 29 years writes it. Good information. I read about cramping and fasiculations. Now when I call my doctor later this morning I know what to tell the nurse.
I'm at a loss for words. It is hard to see to type because of the tears in my eyes.
I always feel like I am waiting for the proverbial "other shoe" to drop.
Anyone else has cramping?

 

[Nikki J]

Diane is a member here. Yes her website is great
Re cramps are you trying magnesium, tonic water and or pickle juice?
Consider asking about mexilitine. There was a recent trial that was looking at slowing progression and did not reach statistical significance there but did find a dose dependent reduction in cramps. If you do not have a contraindication to taking it your neuro might prescribe it off label

 

[Kim Casey]

Max, I always tend to look for your posts. Your words always register well for me. Thank you for all your helpfulness.

 

[ECpara]

I am SO sorry Sibling. Cramps were a real problem for my husband. And quite painful. But he just massaged the heck out of them and they subsided. He doesn't have them as bad anymore. I've heard tonic water is helpful, too, although he never tried it. Hope you find some relief.