First time poster

[worried2024]

Hello, I’m posting for the first time after lurking for a year or more. Firstly my thoughts and prayers are with you and I can’t believe that even through the battle you take the time to help each other and also those people like myself who search for answers. It’s a beauty in humanity.

Quick back story 35 female mum of 1 and wife. Nov 23 twitching started left leg, thought I was dehydrated etc and ignored. January 24, wide spread twitching EVERYWHERE, issues with tightness in both calf’s, cramping etc, slowness in gate and burning feet, involuntary finger movements. Left leg seemed at this stage to be more the issue, cramping burning muscles for a few days then moved to right leg.

Neuro app scheduled, unilateral brisk reflexes right side, wasting of the right thenar muscle, emg scheduled to “rule out MND” Spiralled and was terrified every day, horrendous time for my marriage and in general didn’t cope very well. Widespread fasciculations followed and in March of the same year noticed the arch of the right foot higher and some of the toes dropped. Also noted that the shoes and boots I was wearing became loose on my right leg and noticed internal vibrations, buzzing etc. Noted that my right leg calf area is around 3 cm smaller than my left, it’s clearly visible to myself and my family members. Also since the onset of this my bones all crack continually.

It was found out through investigation I had a parathyroid tumour I pinned my hopes on it that this was causing my issues but this was removed 2 weeks ago. I’ve had no improvement in muscle fasciculations or bones cracking or cramping since the surgery. I also have atrophy of my right glute muscle and a constant sciatic pain in my right leg. No failure or weakness yet.

I had a clean brain and spine mri. A clean emg in March 24 and a second clean emg in October 24. Because of the constant activity in my right leg ie twitches buzzing vibrating and the atrophy terrified that I have mnd and that the emgs have not picked it up. I think genetic testing is the next port of call as per neurologist if the symptoms hasn’t improved with the parathyroid surgery.

Both neurologist think it’s not MND and after my first visit the other 2 neuros did not note any brisk reflexes. I’m drowning here, my mental health is in tatters and I’m just so afraid. Has anyone got any advice or does this sound similar onset to anyone on here? Many thanks for taking the time to read. I appreciate it. C x

 

[lgelb]

It takes time for your calcium levels, etc. to return to normal after a surgery like that. Give yourself time. Much symptom improvement takes about 6 weeks.

The EMGs would not miss ALS as you describe.

 

[worried2024]

Thankyou for your time, I appreciate your reply. I will hopefully see some improvements in the coming months.

 

[worried2024]

I am convinced I have als at this stage. My symptoms started with twitching in the left leg Nov 2023 this progressed on to tightness in the left leg and cramping in both calves. The twitching ranked up to bodywide twitching in Jan 2024, cramps in calves and hands, forearm cramps and burning feet. Feb 2023 first app with neuro- notes possible thenar wasting right hand, brisk reflexes 4+ on right side of body, normal reflexes left side. Fasciculations continued, noted atrophy myself of right calf and ankle, measured difference of around 1 inch comparable to left. Pins and needles, internal vibrations, tremors, involuntary hand movements etc Clean EMG and clean clinical exam reflexes retested march 2024. Clean MRI brain and spine July 24. Symptoms persist fasciculations, burning, cramping. Mild peas cavus of right foot and shoes too big on this side, toes curling under slightly. Burning and tightness move up the right leg and into glute, can feel muscle wasting in the area. Burning sciatica like symptoms. Clean EMG and clinical October 2024. Symptoms persist with nerve pain in right leg, voice cracking, exaggerated swallow. Fasciculations are less now than at the beginning but nerve pain and burning etc right leg persist and right toes also. I am in a very dark place mentally and I am convinced I have als. I have had no weakness yet but I have had hyperparathyroidism which I had surgery for in January. I know als and this have been linked before. I am in such a scary place mentally can anyone advise if they have had similar issues? Many thanks C XX

 

[Nikki J]

I am sorry you are feeling like this

Re the hyperparathyroidism and also the paper you probably saw concluded that in their patient group they were coexisting conditions but not related. Correlation is not causation.

We have a lot of people come here convinced they have ALS in spite of normal emgs, normal clinical exams and no weakness. With that constellation I can’t think of one who did

 

[worried2024]

I’m just terrified and I feel lost my voice is husky and gravelly, my hands are in so much pain and my leg is buzzing and twitching non stop… but I was at London during the weekend and I walked for miles no tripping etc, I don’t know what to think this could be. My heart breaks for those who are suffering and I feel immense guilt for coming here with these questions but I’m terrified this is the start, has anyone had weakness that didn’t show up until over 16 months after twitching? I think I know what I need is therapy but also an answer to what is causing me to have these symptoms, I was so healthy before the onset of this. I’m at a total loss, thankyou for replying to me.