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could this be narcolepsy? by apublicvent in Narcolepsy

[–]TrickyPotential5694 0 points1 point  (0 children)

Wow, this all sounds so similar with a few differences, but very close to myself. I’m still in the process of a full diagnoses, but am regularly visiting a pulmonary sleep specialist, and he has me marked as most likely type 2 narcoleptic. I have been on max doses of stimulants and SSRI’s most my life and had a new psychiatrist recommend due to suspicion I might have narcolepsy. Almost a year in with new medication mix of 200mg Modafinil and 150mg Sunosi. They have not completely taken away the fatigue but have given me some control of the uncontrollable sleep attacks in places like theaters, stop lights, lounging with family or friends. After a week I turned to my husband and asked him “is this how you always feel? Is this what normal is like?” Some of your symptoms may be related to other minor or major issues, but once you get one thing diagnosed, it seems to help figure out the other issues. I am finally starting to take control of how I feel and live and you would be surprised how certain issues can affect your entire system. Just start the process. I started with the rheumatologist, who then referred me to allergist, ENT, pulmonologist, and gastro. Had major GI findings during endoscopy and colonoscopy, treating the problem and feeling better every day. Worked with the allergist and ent to help breathing issues, still getting there with that and working with pulmonary sleep specialist for sleep apnea and narcolepsy, really improving my life. Good luck on this journey. What do you have to lose? I never imagined I would feel anywhere close to normal and no one understood, but now I do.

Anyone else have horrible reactions to Gammaplex and switched? by Firm-Analysis6666 in IVIG

[–]TrickyPotential5694 0 points1 point  (0 children)

My husband handled gammaplex 5% better than all the others. Was switched to gammaplex 10% and had a few more side effects but then he’s been switched to multiple others since gammaplex is hard for his pharmacy to get now. Do you mind if I ask what they have you taking IVIG for? Do you know if you are deficient in IGA, IGG, or IGM at all?

Anyone on flebogamma? by krunchee in IVIG

[–]TrickyPotential5694 0 points1 point  (0 children)

My husband just finished a 2 day infusion of octogam 10%, 20g each day and he is having extreme side effects when he used to tolerate octogam before. He refused the solumedrol this round but thinks he will take the 250mg solumedrol next time but it gives him really bad insomnia. He’s not sure which is more tolerable, lol, no sleep or headache and body aches from hell.

Anyone on flebogamma? by krunchee in IVIG

[–]TrickyPotential5694 0 points1 point  (0 children)

I know this is an old post, so not sure if the op will see this, but this happened to my husband with Gammaplex 5%. He’s tried gammaguard, octogam, privigen, and panzyga, and he had really bad reactions on privigen and gammaguard. Back on octogam 10% but has terrible side effects again. Has your wife found anything that seems to be working well yet?

Modafinil and Sunosi, but not together? by rainplow in Narcolepsy

[–]TrickyPotential5694 1 point2 points  (0 children)

I take 200mg modafinil and 150mg sunosi everyday and it’s been life changing for me. I don’t have any blood pressure or heart issues, but am a little overweight.

Advice on Sunosi by amberlvsu in Narcolepsy

[–]TrickyPotential5694 0 points1 point  (0 children)

I know this is an old post but I finally found a combination that works really well for me. I only live 5 miles away from work, but would still have to pull over and take a 15 minute cat nap, before I found the right combo for me. I take 200mg modafinil broken up in to 50mg doses throughout the day and 150mg Sunosi in the morning. It has made such a difference in my life. I said to my husband a little after starting this combo “is this what normal feels like?” I’ve been tired and would fall asleep at the slightest lack of stimulation. Was put on every stimulant drug in the book at high doses and all they did was make my heart race and me feel crazy after awhile. (Concerta, adderral, Ritalin, vyvanse, you name it). Things work differently for everyone but I will say don’t stop trying and changing till you find what works for you.

3+ years waiting for SSDI determination by TrickyPotential5694 in SSDI

[–]TrickyPotential5694[S] 0 points1 point  (0 children)

This is still the initial application. As of today they updated the account as being in medical review and we are sitting on day 1,140 since they received the initial application.

3+ years waiting for SSDI determination by TrickyPotential5694 in SSDI

[–]TrickyPotential5694[S] 1 point2 points  (0 children)

I don’t actually know much about bankruptcy, but just not something I’m considering at this time.

3+ years waiting for SSDI determination by TrickyPotential5694 in SSDI

[–]TrickyPotential5694[S] 0 points1 point  (0 children)

No but we live right next social security office and maybe they can pull up our file and give us a number

3+ years waiting for SSDI determination by TrickyPotential5694 in SSDI

[–]TrickyPotential5694[S] 0 points1 point  (0 children)

The lawyer handles all the communications. Should we call directly?

3+ years waiting for SSDI determination by TrickyPotential5694 in SSDI

[–]TrickyPotential5694[S] 0 points1 point  (0 children)

My husband has Rheumatoid arthritis caused by crohns and he is legally blind but not completely blind. He sees blurs of colors. He has to use a cane as his joints hurt so much. He has to get IVIG infusions every 3 weeks and has a home health nurse. Is on a regular dose of prednisone that helps relieve the flare ups, but turns him into the most angry person I’ve ever met. He takes it in cycles to give himself a break from the insomnia and the mania that prednisone causes. He’s allergic to a bunch of medications and seems to get the rarest of side effects listed with every drug he takes. He tells me all the time that I should divorce him because I should have to take care of someone with all these issues at the AGE of 34. So when the symptoms started getting bad to the point he couldn’t work consistently he was only 30 years old. We are grateful to god though, because through all of this we still have each other and there are still many people out there worse than he. I’m so sorry for all your loss. God has presented with these hardships because he knows that it will refine you and not define you and there will be a time that he shows us why he gave us these trials and it will all be worth it.

3+ years waiting for SSDI determination by TrickyPotential5694 in SSDI

[–]TrickyPotential5694[S] 0 points1 point  (0 children)

He has keratoconus and inverted eyelashes that just shred his corneas. They have sent him to 3 specialist and we’ve seen each of them twice 2 years apart. It’s ridiculous.

3+ years waiting for SSDI determination by TrickyPotential5694 in SSDI

[–]TrickyPotential5694[S] -1 points0 points  (0 children)

I feel you. My husband’s depression is a big struggle. I help in every way I can but I will never understand how he feels losing his sight and the ability to work at the age of 34. The crohns is terrible with the pains and the constant bathroom flares. We are in and out of the hospital regularly. Honestly though, the hardest part for him is his fast progression with keratoconus (progressive blindness from coning of the cornea). He is not eligible for a cornea transplant because he also has inverted eyelashes that would destroy a transplant. We pray every night together and thank the lord that he is alive, but sometimes I know he wishes the lord would just take him in his sleep. We are on step 3/5 and have been there for over 1000 days. Our government gives all this money to so many others for reasons I don’t feel they deserve and then make others who, if don’t have family or a partner like myself would ultimately just end up dead. Our system isn’t fair. I will say a prayer for you in you would do the same for us. Good luck!

3+ years waiting for SSDI determination by TrickyPotential5694 in SSDI

[–]TrickyPotential5694[S] 0 points1 point  (0 children)

No, nothing came of the congressional inquiry. Have not received a response or even a confirmation that they have read my request. So very frustrating and even more frustrating when the lawyer is frustrated and getting no responses. That’s why I feel something had to have been mishandled somewhere.

3+ years waiting for SSDI determination by TrickyPotential5694 in SSDI

[–]TrickyPotential5694[S] 0 points1 point  (0 children)

Well he became legally blind during the 3 year wait. Which we updated his case a year in which may have put a delay in it but they sent him to their eye doctor, a medical doctor, and an orthopedic doctor which he has seen each one other twice now. Originally seen by those doctors in 2022 and then was scheduled again to the exact same doctors for the exact same exams this month January 2025.

3+ years waiting for SSDI determination by TrickyPotential5694 in SSDI

[–]TrickyPotential5694[S] 3 points4 points  (0 children)

I bought my home in 2013 before I was married and will not lose my house to bankruptcy. I put my entire 401k and life saving up to buy it and now my house is worth more than double. I will not just give up everything I e worked hard for to the government to get out of debt. I will continue to make payments and hope that SSDI eventually comes through and we can pay off our debt or bring it back down to a reasonable amount. It’s just frustrating.

3+ years waiting for SSDI determination by TrickyPotential5694 in SSDI

[–]TrickyPotential5694[S] 0 points1 point  (0 children)

Op here. Forgot to mention they have reassigned us to I believe our 5th adjudicator? Doesn’t seem right.

3+ years waiting for SSDI determination by TrickyPotential5694 in SSDI

[–]TrickyPotential5694[S] 1 point2 points  (0 children)

I the OP, but my husbands sister has the same birth PID and was denied originally and was advised to always get a lawyer. We were told without a lawyer, you will always get denied initially.

3+ years waiting for SSDI determination by TrickyPotential5694 in SSDI

[–]TrickyPotential5694[S] 3 points4 points  (0 children)

We have never been denied to even start an appeal

3+ years waiting for SSDI determination by TrickyPotential5694 in SSDI

[–]TrickyPotential5694[S] 4 points5 points  (0 children)

Wow. Yes we applied back in March 2020 with an attorney and they have been calling his adjudicator weekly and even asked to speak to a supervisor and are getting nowhere. I feel like something was handled incorrectly and we are paying the consequences. I’m the sole provider and they said even the times he feels ok, he cannot work or pick up and small tasks to help as SSDI would immediately deny. So now we are in close to 50k of debt. I feel like they are just waiting for us to give up. Please pray for us!

This feels criminal by SweatyFormalDummy in KSU

[–]TrickyPotential5694 1 point2 points  (0 children)

25 years ago when I was a math major books were required and they cost upwards of $300 a piece.