Still at this

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Breeze

New member
Joined
Nov 16, 2023
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
State
LD
City
Royal Arsenal
Hi All,

I promised to do an update when I completed my Phospholipid Exchange. So I have completed 6 sessions. 2 in the first week and every week since. I promised to tell you the results of the fasting.

Phospholipid Exchange

This was fine but I felt increased strength when I took two doses a week rather than one dose a week. I also did not see any decline in the past 6 weeks except today when I can now feel weakness in my biceps.

The fasting did not help me much as I feel like my symptoms just got worse.

Tongue Twitching

So my tongue is twitching uncontrollably and I have some mild facial weakness. That being said, shockingly guys, this disappears as soon as I take iron tablets. I don’t know how this dots connects but they do.

Doctors Visit

I went to my GP again and he has made an urgent referral for me to see a neurologist. This is because of the tongue fasciculation and muscle wasting around my chest/arm. I thought this would be in two weeks but no. It’s in October! Thanks NHS. How gross.

Other positives

I am likely to continue the Lipid Exchange and have one every two weeks. It has made my skin clear and after each session I feel like my brain is renewed and clear.

Negatives

Every story I have heard of MND starts this way. I don’t know how to feel because I have a 3 year old. I am just hoping the clinical trials work and I am not on my way out. I have started drawing up a care plan for her but it’s really painful. I have all the symptoms. Every single one.

Anyway, I am trying to keep it positive.

Timelines Btw

Month one: weakness in right arm, swallowing issues, tongue fasciculation and mild slurring

Month 2: Clean EMG. Weakness in second hand

Month 3: Weakness in neck and leg

Month 4: Weakness, muscle wasting in right arm and tongue twitching.

Blood Test Results

- [ ] Low Iron
- [ ] Low Bilrubin
- [ ] Low Density Lipoprotein (High)
- [ ] ESR - HIGH
- [ ] CRP - HIGH
- [ ] Copper - HIGH
 
What you report of your labs points to something other than ALS, such as an inflammatory condition. The fact that you feel better after taking iron may be a placebo effect if right after, obviously, but given low iron at baseline, is it really shocking that replacing low iron makes you feel better? And low iron is definitely associated with twitching.

No idea where you are getting this "every story starts this way," but that is inaccurate. Very few ALS stories start with a normal EMG, diffuse issues over only a few months, labs like yours (though "high" isn't a number), etc.
 
Good Afternoon Everyone,

Not sure if you will remember me but I was here last year talking about some of the symptions that I was having. Quick recap.

September: Weak Right Arm

October: Difficulty swallowing and shortness of breath when lying down.

Clean EMG. After the EMG started noticing muscle wasting

November: Weak Left Arm and drop neck

December: Weak Tongue and Tongue fasiculations.

January: Started Phospholipid Exchange. This slowed things a little.

Feb: Weakness progressing on right arm.

Suprisingly, I started taking tudca. One in the morning and one at night. I noticed the pain disappeared. All of it. I am still weak but the pain disappeared and I have not used ibrupofen in two weeks. Tongue Fasiculations: Almost 907% gone. I still notice a bit of weak tongue but not as bad as it was previously.

My fear still remains I fear this could be ALS. Has anyone had any experience using tudca before diagnosis? A dissolvable tudca not capsules.
 
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