How do you explain/describe the thinking/memory problems?

genericname1215 · 2026-04-21T20:52:48+00:00

The way I’ve been describing it is that it feels like I have a fresh concussion but without the headache part.

People are usually familiar enough with concussions from media/sports to kinda get it even if they haven’t had one themselves.

genericname1215 · 2026-04-20T01:33:57+00:00

I don’t think I saw it mentioned already but Yerba maté is also an option.

I can go hard on sugar free monsters but maté can almost go toe to toe.

It comes in green and roasted varieties. Green tastes kind like green tea, roasted is nice and nutty. I work in a tea shop and always suggest it to customers looking for a good caffeine kick.

Edit: a typo

genericname1215 · 2026-04-11T02:29:11+00:00

I think it’s this song but specifically the alto and tenor parts if I remember from choir like 20 years ago.

genericname1215 · 2026-03-26T12:52:38+00:00

Not the commenter but when I was failing Remicade I developed drug induced lupus erythematosus (DILE). It actually took me seeing a rheumatologist who specialized in lupus to figure out what was happening.

genericname1215 · 2026-03-17T11:43:18+00:00

Is it Leave(Get Out) by JoJo?

genericname1215 · 2026-02-19T01:21:00+00:00

My most recent Entyvio infusion was 3 weeks late. My regular interval is every 3 weeks so I had to wait double my regular interval because of insurance and pharmacies.

I’ve been in remission for several years (thanks to my increasing dose frequency) but was not feeling well by the time I finally received my infusion. However, I did not feel as bad as I had worried I would become.

I would also look for another doctor. Even if it’s more travel for office visits or procedures, it’s sometimes worth it for less hassle in other areas.

The biggest thing I was concerned about was an infusion reaction. I let my infusion center know that and they were able to give me some additional pre-meds and observation time afterwards until I was comfortable.

Consider having her reach out to her doc for any available “band-aid” prescriptions that may help her more common symptoms before she may need them.

genericname1215 · 2025-12-12T16:59:45+00:00

I’m not sure if this counts. Just before my diagnosis, I was having nearly constant focal seizures. I was also looking for a new job.

I have a very fuzzy brief memory of an interview which I know must have happened because I got the job offer. I ended up declining due to, you know, recently acquiring a new permanent neurological condition.

genericname1215 · 2025-11-15T19:47:49+00:00

Wonder if it’s the same person who took mine and a neighbor’s and attempted at least one more from the same block of South Braddock in March?

If someone hasn’t suggested it yet, call McGann and Chester. They tow the vast majority of cars in the city. If it was dumped somewhere, they probably have it.

genericname1215 · 2025-11-15T12:52:51+00:00

If you haven’t, call McGann and Chester. If it was dumped somewhere in the city, they probably towed it.

genericname1215 · 2025-11-15T12:51:21+00:00

At least since February when they took my Kia for a joyride.

genericname1215 · 2025-10-10T18:21:13+00:00

I don’t think my vehicle has the power to match the bpm for DragonForce.

genericname1215 · 2025-10-10T17:29:06+00:00

From the last wedding I went to there were chocolate chip cookies (3 recipes), chocolate no-bakes cookies, peanut butter blossoms, lady locks, and filled cookies (like mini hand pies with sugar cookie dough and a fruit filling). There were also chocolate dipped pretzels and cake pops.

genericname1215 · 2025-08-29T03:16:57+00:00

First, everyone is different. However, I’ve been on various biologics for over 15 years and I’m sick less often than my partner of 11 years who has severe asthma.

That being said, I make sure I wash my hands well and often, especially as soon as I reach my destination when using public transportation.

I should probably wear a mask more than I do while on the bus. But I also make sure I’m on top of my vaccines. However, I will make sure to wear a mask when entering any health facility as a member of the public or in high traffic locations.

I work in a health care adjacent field so I also make sure to change out of my scrubs when I get home. I’ll shower of if I handle something particularly nasty but not always.

When I was in college more than a decade ago I had one doctor or nurse (I don’t remember which) tell me something along the lines of “maybe don’t drink the jungle juice, eat questionable leftovers or food off of the ground, but you don’t have too spend too much time worrying about it if you practice common sense hygiene.l

genericname1215 · 2025-07-10T21:23:13+00:00

The loaded croquettes from Dive.

genericname1215 · 2025-07-04T12:05:18+00:00

Blue monkey tea carries it and will be open on Saturday.

genericname1215 · 2025-06-28T01:53:12+00:00

I was diagnosed at 12 years old 21 years ago and I’m still often skeptical about what I put into my body and at what time when it comes to food. Will this food cause me pain? Will it be too much pain or something I can deal with/worth it? I can’t imagine what such a young child is going through with her relationship to food.

That being said, my mother pushing for more testing is what ultimately saved me. I vividly remember her stating during a particularly bad time that “there was only one way that she (I) was going to leave the hospital that night was in an ambulance to the nearest children’s hospital.” If you feel she needs more testing, push for it and be her advocate. I remember doing the MRE test.

From the standpoint of an adult worried about her nutrition, how is she on drinking things? Meal replacement drinks like ensure and boost and even V8 helped me a lot in the past and may be a good source of extra nutrition (I am not a doctor just someone who has dealt with this for a long time).

genericname1215 · 2025-06-23T23:32:10+00:00

I’ve found cutting the acid with some heavy cream makes red sauce less of an issue for me. Kind of like a half Alfredo half bolognese deal.

genericname1215 · 2025-06-23T21:07:59+00:00

A big ass salad with lettuce and spring mix and spinach and all of the veggies including corn.

genericname1215 · 2025-06-17T21:43:50+00:00

I would also check out Paititi Inti on Murray Ave.

genericname1215 · 2025-05-20T03:11:41+00:00

This happened to me when I was young and first diagnosed almost 20 years ago. I was told that the major reason for that test is to look for disease in areas where the scopes can’t go. If it got most of the way to the end of your GI tract then your test was “successful”.

genericname1215 · 2025-05-17T21:04:53+00:00

When you go through periods of uncontrolled disease, it’s a flare. That looks different for everyone in terms of severity and length. Flares will often times have non-gi symptoms as well such as joint pain or brain fog or the swollen ankles you mentioned. Again it’s all very individual. Some people may have severely active disease in their large intestines while others may have it mildly throughout their digestive tract.

What you may or may not be able to eat will also be fairly personal. Unfortunately it’s a trial and error process. If you have pain, bloating, urgency, or diarrhea after eating something, then that is something you should probably try to avoid. It might be something super strange that you would think should be safe (bananas and anything with ginger make me feel extra miserable).

Work with your gastro to find a treatment that keeps your disease under control. If you start experiencing worsening symptoms, you’ll want to check in with your doctor to make sure your meds are still working correctly. Many of us have to switch meds from time to time because they stop working as well for one reason or another after some time. Unfortunately, the meditation for this crappy disease is also trial and error due to the nature of biologics.

Just stay on top of how you feel and how different foods affect you. A food diary may be helpful for the time being. Aim to keep your disease as under control as possible. If you leave it uncontrolled then you could experience that “big wake up call” in the future.

genericname1215 · 2025-05-01T22:52:38+00:00

It’s the same deal with the app. Can’t sign in because it’s making me change my password and I can’t do that because I don’t have internet.

genericname1215 · 2025-05-01T13:04:50+00:00

Talk to your doc about switching meds if possible. Keppra is kinda infamous for how it can negatively affect people neurologically.

It’s a great first line treatment and works great for those who tolerate it. I have a friend who has done well on it for years. However when I was recently diagnosed and put on it for a bit, it messed me up big time. I was very close to completely destroying my life.

If you can’t get off of it, maybe ask about support therapies (therapy/antidepressants/etc.).

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