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GoingCrazy

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Hello all,

I just want to tell my story, to clear my heart, because further I can't tell anyone.
My girlfriend have some weird things going one, but I have not told her that I think of A.L.S.
I’m going insane! My girlfriend has always been very sensitive and therefore I don’t want to discuss this with her.
I’m from the netherlands btw, so sorry for my bad english!

In january:
She gets a new job, have to write a lot, getting more and more pain in her thumb.
In the morning her thumb is stiff and she can barely move him.
When she did’t write a couple of days it goes better.

in may:
She gets joint pain, in her knees, arms, wrist. The joints are very stiff.

End of July:
She comes home from work and can barely walk, has pain in bones and joints.
She has tingling in feet, sometimes a sort of nerve pain she said.
One of her legs has 7 years ago been broken in several places. This leg does most pain.

And then it suddenly goes fast! In one week:
She has trouble with talking, it’s different than normal.
Her whole body was weak and she can not hold herself upright.
She can not walk, her leg is in pain, muscles are hard and stiff.
When she goes upstairs or goes from standing to sitting, her muscles began to quiver in her legs.

We going to the docters many times! First they took it not serious > burn out!
Blood tests said: vitamine D & vitamine b12 lack.
Couple days later: She talks & walk like she’s drunk, the docters checks her reflexes > her reflexes are higher.
They send her to a neurologist.

Aug / sept:
Her loading doses for both is done, now she have it for supplementing.
It goes a little bit better, but not good! walking goes better, talking a little bit better, less weakness in arms and legs.
She starts to lose weight. She gets a MRI scan for brain and spinal cord, she have white spots in her brain,
the neuro said: it’s a little bit different than MS, we also see this with strokes? (I don’t know how you call it)
but you don’t have a stroke because you are 34 years, too young!
but sometimes we see it also with b12 lack so keep doing b12 because we don’t have a diagnosis yet.
She needs to go back in okt to have an EMG and also another test (forget the name of it).

She was 59 kg, now she is 54, 5 kg in one month! she’s very thin.
Now I am afraid if it is a.l.s. I’m going insane! Her reflexes are highh! :/
She’s weak and the docters said that! She’s so skinny now.
Her face looks diferent, one cheek looks like it’s a little bit sunk in, or her jaw or someting?
its a little bit! She don’t know it! But i see it when I look at her, and if she talks her mouth on that side looks different.
I'm afraid she have atrophy in her cheek or something, I don't know! I know I need to relax!

Sorry, I don't wanna waste your time but I can't talk with anyone in my area. Thanks for listening!
 

affected

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It must be awful watching this and feeling helpless, I sympathise.

After carefully reading your story I cannot see anything there that would sound like she has ALS.

Let the doctors keep working, they are finding things, so work with them.

I'm so glad you have not told her you think ALS as the doctors are not even saying this.

Sorry we can't help you.
 

GoingCrazy

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You have helped me me already Tillie!

I was thinking to share my thoughts with her,
but that is for myself and I not help her with that!
She don't need stress about something that might not even is the issue.

Thanks for letting me clear my heart with you!
 

Kosmoskatten

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ALS is non-sensory, e.g the pain and aching points away from ALS. The fact that even though she is not feeling well, she is getting better also strongly points away from ALS. With ALS, there is no improvement.

I am no doctor, but however a medical student. Do you have your MRI report? Does it in that case speak of periventricular white matter lesions? Those combined with gait disturbances, cognitive decline, pain, swelling ( even swelling of the brain and stroke symptoms) CAN be related to severe B12-deficiency.

Periventricular white matter lesions can also be visible in lacunar strokes, but I agree that your GF is very young to be afflicted with that.

I would recommend talking to your GP about B12 injections instead of oral supplements.

Good luck!
 

GoingCrazy

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Thanks for your reply Kosmoskatten!

I don't have the MRI report, im from holland, its not normal to ask for a MRI report.
I did get all the blood tests results but when I asked for that, they looked at me really weird.

Sorry, I was not so clear, she got vitamine D oral supplements and b12 injections.
Her vitamine D is now 800IE every day. The b12 was the first 4 weeks, 2 injections every week,
Now she got one injection every week.

In netherland are the values for b12: 130 - 700, In America this is already increased to 200
But only her serum b12 & folate was test (results b12: 100, folate: 17), and then she got injections.
So now we don't know what her active b12 was. :/

I'm worried about als because she has high reflexes and a little bit of a slurred speech.
She is everything to me, so thats why I immediately think one of the worst things I can experience in this life
 

Kosmoskatten

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If B12 was 100, that is severe deficiency and it could definately be the cause of her symptoms. But again, I am no doctor.

I am presuming you will have a follow up within weeks. Improvement after injections is a good sign, and you need to give it some time. I am presuming your GP is following up, investigating a possible underlying cause (not ALS).

If your girlfriend is everything to you, I think the best you can do is deal with your stress and fear about this.

This does not sound like ALS.
 

GoingCrazy

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Thanks Kosmoskatten,

That's right, the last days I dealed with it and it goes better.
I needed to talk about my fears out loud, I think.

Thanks for listening!
 

NeedCourage

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I'll share my story... I suffered from a multitude of symptoms over a period of about 7 years. Went to various specialists ... no answers. Finally one morning I awoke and realized I could not write with a pen! My feet were almost numb - hands too. Also I could not type because I could not feel keys. All the aches and pain were written off by me - but this was scary.

After 3 specialists including 2 neuros and one surgeon who wanted to operate on my neck - the last neuro said as I was leaving his office, "Has anyone checked your B12?" ... Now we already knew that I had brain lesions, white, from the MRI's and yet they ruled out MS. Said I had the brain of an 85 year old... Guess it's 95 now since that was 10 years ago.

So I rushed to get a B12 test. The doctor's office called next day and said, "Run to a hospital and get a B12 shot immediately. Your level is barely measurable - 68!" Yep, 68.

I got the shot and started on a daily dose of 5,000 sublingual (under tongue) methylcobalamine B12. Has to be methyl.... Some of my symptoms went away in a few weeks - some get better slowly over months and some never repaired. I was too far into the depletion. As my B12 level would rise I would gradually cut down on the amount of B12. (it now ranges between 650 and 2000 once!)

Also - have your antibodies tested. I tested positive for pernicious anemia - an autoimmune disorder. I will have to take 1000 micrograms of B12 EVERY DAY OF MY LIFE> You need to see if this was caused by dietary insufficiency -- or like me, as a result of missing"intrinsic factor" in stomach (autoimmune).

My husband has als and my journey with B12 deficiency was nothing like it - so try not to worry.
Good luck, Nancy
 

GoingCrazy

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Update:

When she got the MRI, she had 3 white spots,
The radiologist said it looks like its from b12,
It looks also like ms but that looks a bit different than what she have.

Now we were by a specialist for internal diseases cause of the low b12,
She said that white spots in the brain can not come from low b12, pffff.

Soon she have an EMG for the muscles and nerves.

- She still has high muscle tension (do I say that right?)
- Higher reflexes.
- Weakness
- Trembling muscles in her legs when bending / climbing upstairs / sometimes when she stands, walks.
- Joint pains, nerves pain, bone pain, dizzy.
- Sometimes blurred vision
- She have tingling / weird feeling on the skin.
- And so many more things.

Some people over here said that many things she have points away from ALS.

I keep updating here for the people who come here, with the same things as her.
Maybe this topic can eventually help them.
 

GoingCrazy

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Thank you for your story NeedCourage! 68 is very very low! Thanks for your wise words, I need to try to keep calm :)

The specialist for internal diseases check her intrinsic factor and more things
But we get all the results in 2 weeks.

She have now every week b12 injections but not methylcobalamine!
They don't have that here and is also not available in our country.

We do have the melt tablets here (under tongue), but they said she need injections.
So we were thinking to order them from outside this county, but we will see...

She walks and talk better, she have a better concentration.
4 hours per day she can do something, 2 months ago it was 15 minutes per day.
So maybe it's something else than b12 but we will see, first the emg and than we look furter.
 
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