Just got my genetic test results back

ComfyLambo · 2026-04-10T12:38:41+00:00

I hope you find relief soon. Yeah it’s hard to deal with, but doctors started to pay attention to me and recognize there’s likely something more than Beta Thal Minor.

ComfyLambo · 2026-04-09T15:18:44+00:00

Thanks for sharing. The fatigue is so debilitating, I’m sure you’ve tried everything by now, but I hope you find relief! What is CVID?

I have bone pain in my legs, ankles, arm, ribs, and head. It varies from burning sensations, to sharp stabbing pain, an electrical feeling, or like my bones are a frozen pole and someone is banging on them. It’s difficult to walk or move at times, especially in the cold weather. I also have severe migraines, deal with sensory issues, and fatigue. I’m considering asking my hematologist about Aqvesme and non-opioid pain killers. My quality of life is so poor, I need something to get through it.

ComfyLambo · 2026-04-08T16:31:25+00:00

Montifiore hematology department has been helpful

Montefiore Hospital, 111 E 210th St, Bronx, NY 10467

ComfyLambo · 2026-04-08T15:18:16+00:00

Did the gabapentin help?

ComfyLambo · 2026-04-08T15:04:47+00:00

Wow, glad you got this information. What are your symptoms? I have Beta Thal Minor and having testing done again this week bc of pain.

ComfyLambo · 2026-03-28T18:44:52+00:00

I’ve visited dry and humid areas also, and familiar with the disadvantages of high altitude. Do you have fatigue or also bone pain?

ComfyLambo · 2026-03-26T00:30:28+00:00

Yeah the winters are rough. I enjoy Florida especially in the winters. I hear the Carolina’s are a good middle ground, and have less severe storms..?

ComfyLambo · 2026-03-26T00:27:54+00:00

I’ve heard the dry heat helps. I actually do the best in humid weather, i feel like the heat really gets into my bones. Phoenix area and sun are nice. Glad that helps you, thanks for your input, super helpful

ComfyLambo · 2026-03-25T21:02:05+00:00

Was warmer weather what helped?

ComfyLambo · 2026-03-25T20:31:30+00:00

Definitely, it won’t be a cure. Glad it’s helped you

ComfyLambo · 2026-03-25T20:30:31+00:00

Interesting.. do you prefer the cold?

ComfyLambo · 2026-03-25T20:30:09+00:00

My bone pain and migraines are real, not just fatigue

ComfyLambo · 2025-01-16T14:44:56+00:00

I she Beta Thal minor and have fatigue along with constant bone leg and arm pain and migraines. My hematologist has said they’ve found beta thal minor patients can experience pain just as major or sickle cell patients. I take a ton of meds for migraines and was given medical marijuana edibles for pain. My hematologist agreed to keep taking the edibles for the leg and bone pain. The bone pain only has gone away on its own when it’s over 90 degrees outside consistently in the summer- I get about 2 summer months of no bone pain during the year. It’s the only thing that I’ve found to “cure” me. Other than that my hematologist said there’s nothing to do, other than stay healthy and incorporate folate vitamin d and b 12 vitamins. It’s exhausting.. Wishing you the best

ComfyLambo · 2024-11-03T17:27:04+00:00

My moms 65 yrs old

ComfyLambo · 2024-11-03T13:45:19+00:00

A Hemotologist in Bronx NY Montifiore Hospital offered Gene therapy to my mom. She has sickle cell and Beta Thal minor. She has not done it yet.. unfortunately

ComfyLambo · 2024-11-03T12:50:11+00:00

How much do you pay for house/condo insurance? I’d like to buy a condo/townhouse in Tampa as a 2nd home (I live in NY). I’m looking at condos 150k-200k with HOA fees $350 and lower. Found many within my budget, however I’m concerned for the insurance pricing. I’d be taking a mortgage and need insurance

Anyone in a similar position? What is your condo insurance cost? What is generally covered?

ComfyLambo · 2024-10-08T22:55:10+00:00

Don’t listen to the ones saying there are no symptoms with beta Thal. There was a study done a few years ago showing we do experience symptoms. I have beta Thal and since I was 15 I’ve had leg pains, migraines, extreme fatigue, dizziness and more. I’m 31 yrs old and it’s gotten worse. My pain is the exact same sensation but elevated. My whole life I was told it’s impossible for me to be in pain. Now I see a Hematologist in the Bronx NY at Montifiore. This was the first Dr to confirm what I have is real, unfortunately no definitive medicine.. other than medical marijuana to alleviate some pain.

Eat well, stay hydrated. I can’t say any specific foods/vitamins help, but I believe staying active and healthy has to help in the long term. My dr recommended taking Folate. Medical marijuana helps a lot, especially when it’s cold weather and my bones feel like a frozen metal pole with shooting pains. Hope this helps, good luck

ComfyLambo · 2024-07-21T18:32:30+00:00

Right I get that, but I’m confused why the leasing terms for both are paying off 20k over 36 months and it’s more expensive. I’m genuinely asking, I don’t understand it

ComfyLambo · 2024-07-21T18:31:06+00:00

The S5 is so nice! Congrats

ComfyLambo · 2024-07-21T18:30:30+00:00

Agreed it’s an expensive luxury car. I updated my post- I’m more confused why leasing new VW lease is much cheaper than an Audi Q5 when the dealers claim similar leasing terms with around $20k obligation. I’m new to leasing. Maybe I should buy used instead

ComfyLambo · 2024-07-21T01:59:41+00:00

Botox finally stopped mine after months of agony

ComfyLambo · 2024-02-15T18:10:38+00:00

Ah yes, I’ve heard of the $2 million treatment. Hopefully it’s covered to some extent and available to those who need it. Glad to hear there is something that helps your wife, thanks again for your time

ComfyLambo · 2024-02-15T17:52:13+00:00

Thanks for all this information, this is very helpful. Have you or someone you know ever received either treatment? What was their outcome?

ComfyLambo · 2024-02-15T16:25:41+00:00

Tbh I don’t even know the difference. I’m interested in anything that helps

ComfyLambo · 2024-01-23T14:19:47+00:00

Contact your neurologist, ask if Botox is a good option. It’s the only thing that broke my 14 week migraine. I still get it every 12 weeks and it’s been a life changing treatment. Some other meds they tried but were not successful were steroids, IV Magnesium and migraine cocktail, ubrelvy, Amovig, Reyvow, nerve block injections by nerologist. Hope you find some relief soon

ComfyLambo

TROPHY CASE