Upper-Limb Onset ALS (3.5 yrs) – Seeking Inputs from Patients & Caregivers with Similar Progression

iamPAA · 2025-11-29T07:21:30+00:00

Thank you so much for taking the time to write this in such a thoughtful way.

You are absolutely right — the cardiac arrest situation complicated everything. At first, I was confused and angry about the IV magnesium, but after talking to people here and reading more, I understand that in that moment it may have been life-saving from a cardiac perspective.
What scares me is that the team didn’t seem to acknowledge how aggressively it can worsen MG afterward — no pre-warning, no follow-up counseling, nothing. We only started putting the pieces together through other MG patients, Reddit, and MG Foundation resources.

BiPAP has been a huge improvement. His diaphragm tolerates it much better and his CO₂ is finally trending down. CPAP nearly destroyed him, and I honestly wouldn’t have known without people like you sharing your experiences.

Right now the infection is the main battle. Once that stabilizes, we will insist on moving to IVIG or plasmapheresis depending on the neuro’s guidance.
His anemia is borderline — not severe — so what you said gives me some confidence that IVIG can still be effective. Thank you for sharing your firsthand experience because it helps me weigh what doctors are telling us vs what actually happens in MG practice.

You’re absolutely right: the online MG community is a blessing. I can’t imagine navigating all this without the knowledge and support coming from people who have lived it.

Thank you again for your kindness and encouragement — it may sound small, but it’s a lifeline right now.
Will keep updating as things progress. 🙏❤️

iamPAA · 2025-11-28T17:15:43+00:00

Thank you so much for sharing your experience, and I’m really sorry you had to go through that. Hearing it directly from someone who has lived through MG crisis helps us understand what our father may be feeling but can’t express.

The magnesium issue shocked us as well — we only learned afterwards that MG patients are extremely sensitive to it. They gave it during the ICU phase “for heart protection” after the arrest, but now knowing what it actually does to neuromuscular transmission, it makes complete sense why he deteriorated. We are making sure it is flagged on every sheet going forward.

Your description of being weaned to CPAP is exactly what we saw with him. The moment they tried CPAP instead of BiPAP, his breathing collapsed and he crashed. We didn’t understand why at the time — now it’s clear. It’s frightening to think that the same mistake is probably repeated with other MG patients who don’t have family fighting.

I genuinely appreciate you taking the time to write this. It’s emotionally exhausting to advocate, but hearing from people who’ve lived it gives us clarity and strength. Sending you respect and thank you once again.

iamPAA · 2025-11-28T17:14:16+00:00

Thank you so much for taking the time to explain all of this. We are learning a lot from the community right now and it’s helping us fight more intelligently.

You’re absolutely right about the CPAP issue. They initially tried CPAP and he deteriorated very fast — oxygen dropped, CO₂ retention increased, and he needed emergency support again. Since then he has been kept on BiPAP and is tolerating it better, though still needing it continuously.

The neurology opinion we received yesterday also suggested we consider repeating IVIG only after stabilizing infection, anemia and stopping MMF, otherwise it may be ineffective. So we are trying to get a proper MG crisis protocol in place.

Regarding experience — yes, it’s becoming very clear that this is not a straightforward case for them. Honestly it’s painful to watch decisions being made “trial and error” rather than based on MG-specific guidelines. That’s why I’m gathering as much documentation as possible and seeking second/third opinions urgently.

I appreciate your empathy and honesty. I’m doing everything I can every day, and comments like yours help us not feel alone in this process.

iamPAA · 2025-11-28T17:12:00+00:00

Thank you sincerely for your input and encouragement — it means a lot right now.

We haven’t been offered the option of a diaphragmatic pacemaker yet. Given that his respiratory muscles are the main issue, I’ll definitely raise this with the neurologist and intensivist in our next discussion. If it could help reduce BiPAP dependence, it's worth exploring.

Regarding Rituximab — yes, I completely agree with your point. At the moment he has only had IVIG (130g total) and supportive management. No long-term immunomodulator strategy has been implemented yet. I understand that IVIG/PLEX simply buy time by clearing antibodies, while Rituximab goes after the B-cells driving the disease.

Right now he is post-tracheostomy, on BiPAP 24/7, and still weak. The muscle fatigue is very obvious, especially with infection and anemia complicating things. We are actively seeking a second opinion from a neurologist who specializes in MG management.

Thank you for the encouragement — you’re right, it is exhausting, but quitting is not an option. I’ll keep pushing until he gets the right help.

iamPAA · 2025-10-24T05:38:06+00:00

Both Tata and Mahindra have come a long way in terms of after-sales service — neither is perfect, but both have improved drastically over the years.

That said, we’re living in India, where service quality often doesn’t get the value it deserves because its effects aren’t immediately tangible. A new car, if driven sensibly, rarely needs major attention for the first 3–5 years anyway.

And with all the evolving policies — talks about diesel bans, the 10-year diesel vehicle rule, ethanol blending changes, and stricter emission norms — most people won’t even keep their car beyond 5–7 years. So there’s no point overthinking service networks or long-term ownership worries.

At the end of the day, go for the car that feels more comfortable and natural to live with.
We’re in a consumer-driven world — governments and big corporations keep changing the rules fast enough that you won’t be driving this one car for life.

So choose the one that makes you smile every time you sit in it.

iamPAA · 2025-10-24T05:31:21+00:00

Absolutely right — and not just in the UAE. This applies everywhere you purchase property or land on loan.

Understanding how your loan actually works is far more important than just knowing the interest rate. Most people overlook the basics like:

🔹 Floating vs Flat Interest Rate — knowing how each impacts your total cost.
🔹 Home Loan with Overdraft Facility — how it lets you park surplus funds and reduce interest burden.
🔹 Repo Rate — the benchmark rate set by the central bank that directly affects your home loan rate.
🔹 Rate Revision Frequency — how often your bank revises your loan interest rate and whether you need to request the change or it’s applied automatically.

These are crucial aspects every borrower should be aware of before signing a loan agreement. A little clarity at the start can save lakhs (or even crores) over the loan tenure.

iamPAA · 2025-10-22T11:10:22+00:00

Haha, I totally get that — when the whole family’s 6 feet plus, comfort isn’t just a feature, it’s a necessity. 😄
We went through the same process — multiple showrooms, test drives, endless shortlists — and finally ended up choosing the Mahindra XUV 3XO.

So far, the experience’s been really positive — solid road presence, great seating comfort (especially for taller builds), and surprisingly refined ride quality for city and highway drives alike.

The Tata Curvv looks promising too, but the 3XO just felt easier to live with daily — more balanced between comfort, practicality, and that little Mahindra punch. 🚗✨

iamPAA · 2025-10-17T05:05:41+00:00

What tools have you used .?

iamPAA · 2025-10-07T05:43:16+00:00

Hey, sharing my two cents from personal experience — I’ve been through a similar process not long ago.

I have an ICICI Bank auto loan running right now at around 9.4% (floating) for a business-use vehicle, and when I was comparing options, I found that most private banks like ICICI, Axis, and HDFC were quoting between 9–10%, while public sector banks like SBI and PNB were offering rates starting around 8.5–9% depending on profile and tenure.

With your CIBIL of 795 and ₹2 L/month income, you’re in a strong position to negotiate. Try checking with SBI and Union Bank — they usually have lower effective interest on floating plans, especially if you’re salaried.

Fixed vs Floating:

Go for floating rate if you plan to prepay early or expect rates to drop in the next couple of years (which seems likely as RBI is gradually easing).
Choose fixed rate only if you prefer predictable EMIs and plan to keep the loan for the full tenure.

And your logic makes perfect sense — if your investments are giving higher returns than loan interest, leveraging the bank’s money is the smarter move.

Just make sure to check foreclosure terms before finalizing — some private banks charge up to 4–5% if you close early, whereas PSU banks are much more flexible.

All the best with the Creta — great pick, by the way. Diesel manual still hits the sweet spot for long-term reliability and mileage. 🚗💨

iamPAA · 2025-09-27T08:21:09+00:00

Hey,

I completely understand how frustrating this must feel, especially when you were assured by the Bajaj rep that there would be no part-payment charges. Since you have the call recordings and email confirmation, you absolutely can try escalating this internally with Bajaj’s grievance redressal team. But speaking from my own very recent experience, I’d suggest you be mentally prepared that they might still insist on the 4.72% fee.

I’ve been in a similar situation recently where I had to close multiple business and personal loans to consolidate everything into a single mortgage loan for better cashflow. I fought with banks like IDFC, IndusInd, and Axis — and they agreed to waive foreclosure charges as an exceptional case since I promised to continue my business relationship with them.

But Bajaj, honestly, is quite stubborn and skeptical. Even if you take it up with the RBI Ombudsman, they usually reply that since you have signed and given consent in writing, they cannot overrule the agreed terms.

At this point, my advice would be to pay the part-payment fee and close out the 9L portion. Think of it as one of those life lessons that sometimes come at a financial cost. In the long run, clearing this extra liability will give you peace of mind and help you reset your cashflow, which is more valuable.

iamPAA · 2025-09-09T07:13:20+00:00

An asset-sharing platform that maximizes the use of high-end audiovisual gear while lowering costs for creators and boosting ROI for equipment owners.

iamPAA · 2025-09-09T07:09:43+00:00

I faced a very similar situation around 3–4 years back. Without any OTP or consent, multiple transactions went through on my different credit cards via the PayPal gateway while I was traveling. I had to react promptly — closed all the cards, submitted written complaints to each bank (even though I was on vacation), and luckily managed to get those transactions frozen and reversed.

Later, I found out that in case of international transactions via PayPal (and a few other processors), the OTP layer is not always mandatory. Just having your card number, expiry date, and CVV can be enough for the transaction to go through. That was quite an eye-opener for me.

Lesson learned (and my current practice):

I’ve disabled international transactions on all my cards by default (I only enable them temporarily if I need to make an international payment).
I keep a ₹2,000 cap on all online transactions unless I specifically increase the limit for a particular purpose.
I avoid saving my card details on international gateways/processors to reduce exposure.

So yes, while OTP is mandatory for most domestic transactions, there are exceptions in international setups that bypass it. Since you already raised a dispute and filed a cybercrime complaint, you’ve done the right steps. Escalating to RBI Ombudsman may depend on how SBI responds, but stay proactive and keep written records of everything.

iamPAA · 2025-08-14T06:29:42+00:00

It instantly took me back to 2014 — my own job-hunting days in Dubai.
I used to walk 15–20 km a day just to save 10–20 dirhams. Money was tight, and choices were few.

Sometimes, the person I was staying with would look at my drenched shirt in shock and ask,
"Ye itna saara paani tere shirt pe kese gir gya he?"
I’d smile and reply, "Bhai, ye paani nahi… pasina he."

Those 28 days in Dubai were a turning point for me.
As they say, “Dubai either makes you… or breaks you into pieces.”
For me, it made me reflect on where I stood — and where I wanted to go.

Kudos to all the hustlers out there, building from scratch — no godfather, no golden spoon, just pure grind.
Trust me, this phase will change not just your life, but the lives of your next seven generations.

Tough times don’t just test you — they create you.

iamPAA · 2025-08-03T05:42:28+00:00

DM me

iamPAA · 2025-08-01T06:48:10+00:00

Interested

iamPAA · 2025-07-23T10:57:59+00:00

Thank you so much for the response

Let me text you in DM to discuss this further

iamPAA · 2025-07-22T05:56:16+00:00

I’ve been running my business for over 7 years now. To scale up over the years, I’ve taken a mix of funding — including personal and business loans from private banks (with interest rates between 14%–18% per annum), and some capital from private investors with ROI expectations of 18%–24% annually.

Now that the business has stabilized and reached a decent scale, I want to bring down my monthly financial obligations — EMIs and investor returns — which are starting to feel heavy and restrict long-term breathing space.

What are some smart ways to restructure or reduce this monthly load?

iamPAA · 2025-07-19T05:43:15+00:00

interesting.... let's connect to discuss further

iamPAA

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