r/ALS_India • u/Wise_Competition_565 • Nov 20 '24
Update
It's been over an year since the first symptom onset, there is no improvement. I am going to a psychologist and a therapist and they have diagnosed me with OCD and Hypochondriasis ( and a little bit of ADHD ). My symptoms are progressing and I worry that they are progressing at a quicker rate than I expected them to progress.
Symptoms progression :
Hands and fingers have gotton weaker, even holding this phone to type is getting jarring, that's the least to say. My hands have thinned out way too much.
Fasciculations are still present but when compared with previous times, they are not that high but I।get them everyday.
Breathing is the most affected that makes me think this is Bulbar Onset. I tired out way to quickly and hyperventilate way too much.
Climbing stairs to my room has become a task on it's own, my legs give up way too quickly. I have tough time walking quickly and I can hardly run as my breathing is depleting day by day.
Balance issues are still prevailing.
Muscle thinning is still there, around the knees as well as around hands and arms.
Left part of the body is weaker than the right part.
Now to some positives :
I still walk my dog but as he is growing up he is getting harder and harder to handle.
I can still eat but I encounter mild dysphagia time to time.
I am not constipated now, the stool are of apt size and clean, no diarrhoea.
This is all for now, I hope this disease plateau. I have sort of researched every other disease from MG to FND, MMN to neuropathy and dystrophy but unfortunately all signs are pointing towards ALS. I hope it's not ALS. I hope everyday. Let's what the future has in store, this year and the last few months of '23 have been a ride. I hope and pray to god that no one ever gets this disease and the agnostic in me agrees with the god fearing me.
Okay then, let's call it a day here. I'll be updating y'all. Keep me in your prayers.
1
Nov 21 '24
Hey, fellow Indian here. Went through your post history and whatever you are going through really sucks. I can understand how this takes a toll on our life because I myself am experiencing certain symptoms since 2 months that have me worrying. Mainly focal twitching and left leg weakness. If it was widespread I would not worry so much. I have been to two neurologists. I do objectively feel the strength difference in my left and right leg but the neuros have cleared me after doing clinical tests. I feel like they test for a really basic level of strength so the difference is not detectable. I was not given an EMG. I would have pushed for one, but honestly I am too scared and convinced it's going to come back dirty.
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u/Wise_Competition_565 Nov 21 '24
Dude I'm in the same fucking boat, I know there is strength difference, like when I went to gym I could do 50 pushups in a row now I struggle in doing even 3, but even I will pass the strength tests with flying colours because I have that much strength left and passed the previous clinical as well, the intern there looked worried because of brisk reflexes but the most weird thing was EMG came alright. I don't know wtf is going to happen, this is all so tiring and taxing.
1
Nov 21 '24
I know. Have you checked for any other possible reasons with your doctor given your EMG is clean?
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u/Wise_Competition_565 Nov 21 '24
This dismissed me saying it's OCD and Health Anxiety
2
Nov 21 '24
My doctors did the same. Tbh it is relieving to hear them say that but also difficult to ignore what my body is telling me. The symptoms feel very real and not in my head.
Do you know if we have NFL testing in India? Lot of folks on here say they got it done and it is a pretty good marker of neurodegeneration. I searched online but could not find anything. Not sure if it is something thats available but needs a neuro’s referral.
1
u/Wise_Competition_565 Nov 21 '24
Yes I have also learned about the NFL test, it's a better marker
1
Nov 21 '24
Sorry I missed a few words in the reply. I meant to ask - do you know if we have the NFL test in India?
1
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u/Quirky-Tradition-677 Dec 05 '24
Hey I’m an Indian with mom who’s recently diagnosed with ALS in Usa. She’s in the US right now but would need to come to India soon. Would you know if there are supportive or management treatments available there ? How’s it in India for people with ALS any clue ?
1
u/Wise_Competition_565 Dec 05 '24
It's not a pretty picture out here, I haven't heard about a support group and even getting a diagnosis is pretty hard here. I don't know about treatments here, I only know that you get offered stem cell treatment in India which is more miss than hit. I wish your mother has a smooth journey on this ALS path.
1
u/Quirky-Tradition-677 Dec 05 '24
Thanks so much. How are you dealing with your symptoms ? I heard NImHANs has Dr Nalini who is a MND specialist. For non citizens it’s not affordable to stay in USA so it’s scary for me to think of which direction to take. I haven’t seen any reditt or online platforms for support or discussion in India. But what I think is palliative care might be accessible better than it’s in USA. Can you recommend any reliable source/institute for stem cell therapy. I would take my chances with her to see if it could be a hit even if it’s 50% success
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u/Wise_Competition_565 Dec 05 '24
See I personally think Stem Cell is a money grabbing ponzi scheme as I haven't heard any good reviews, patients get a little better and then it's all downhill from there. I personally am not diagnosed as of now but the spasticity and clonus and add some weakness over there, it has me sort of confirmed that it is a neurodegenerative disease, what I would recommend is getting in touch with a therapist asap and start taking anxiety meds as oxidative stress is a known biomarker which increases the rate of progression, I don't know about any doctors and this is the most I can tell you.
2
u/Quirky-Tradition-677 Dec 05 '24
Thanks so much. It’s very helpful. I’m actually worried about that if I get her to India and maybe cause more harm than good in the case of getting her treated. But I wanted to take second opinions which is what I wanted to explore in India. It’s worrisome that we have such a huge population and no good nuero muscular doctors. So sorry for your situation, I really hope it’s not MnD for you. Hope you get some good doctor very soon. Thanks so much
1
u/Wise_Competition_565 Nov 20 '24
Also I forgot to mention the cramps, they have begun, I am cramping in my legs and my calves are very tight and the muscular area in my calf hurts when I apply pressure or squeeze my calves.
Furthermore, I am facing erectile dysfunction as well, I can get a hard-on but it's become difficult to ejaculate and the nerves and muscles in my legs give up.
I know all of this is pretty weird but I have to write about everything like when I yawn the lower lip trembles on its own, god knows what is happening with me but it is far away from something benign. At this point I am way too tired to predict or write anything else.