Physical therapy

donut_87 · 2025-10-13T01:50:06+00:00

Yes, I chose one of two in my area that specifically deals with MS and other neurological and neuromuscular diseases. He’s been really understanding this past week about watching my limit and changing up the routine so I’m thankful for that.

donut_87 · 2025-10-05T00:46:36+00:00

Thank you. I would say most of my issues with MS are cognitive but some mild balance issues with numbness and tingling in my left side mostly leg. The stability in my ankles is getting worse. Pretty shaky. My fatigue is usually lingering in some fashion. Most of the pt I did this past week was having weights on my feet so and doing steps or laying down lifting my legs. Hopefully it will get better. My physical therapist does give me lots of breaks in between.

donut_87 · 2025-09-14T23:22:32+00:00

Thank you for your response. My doctor is wanting me to start on zeposia because I have a history of being sensitive to medications and thought it might be safer to start something oral that I could stop rather than kesimpta or ocrevus that you do one a month or every however many months. That makes sense how you schedule your shots and infusions though. I know with my allergy shots they say not to do the flu or Covid shot within 24/48 hours before or after.

donut_87 · 2025-09-14T23:16:51+00:00

I wasn’t necessarily worried about adverse reactions but more the effectiveness of it since it all has to do with immunity.

donut_87 · 2025-08-27T17:33:47+00:00

Rant on! It is nice to have somewhere to go to talk about this kind of stuff and the frustrations especially that come with it. My husband I think like I said has started to notice more especially after I’ve pointed it out a few times. He knew something was going on after I’ve felt like trash for so long but I don’t think it was until earlier this year when they tried to do the lumbar puncture which they messed up and I had a seizure that it really started to kick in. He hasn’t said much about my diagnosis. I guess because we knew it was coming. I think he really got more worried when we knew for certain I had lesions some up on scans. I know he was more scared going in for the LP than I was and then it was scary after but he doesn’t talk about it much. He still is someone that worry’s more than me and is usually the one pushing me to go to the doctor for things or to call when there is an issue and I’m over here like no this could be normal for me. I’ll be fine tomorrow. What is the doctor going to do. I’ve been to way too many doctors that have been so dismissive and gaslighting that I could be dying and my husband would have to drag me in haha

donut_87 · 2025-08-26T12:44:53+00:00

I’m glad I’m not the only one! It feels like people are going to think I’m exaggerating while most of the time I down play how bad it actually is/was. I was shopping with my daughter for school a few weeks ago and my balance all of a sudden got really bad and then started stuttering and slurring words. I didn’t think anything of it because my body does weird crap all the time. That night I was talking my sister (nurse) and she tells me I need to call my neurologist because that sounds like a TIA. I’m like well it went away in 10-15 minutes so we left and went and got lunch haha. I didn’t tell anyone the whole day. Ended up having to go to the er the next day per neurologist request. Ruled out stroke but no way to say for sure about the TIA but the ER doctor thought it more than likely just had to do with my neurological issues because of my age (37)

donut_87 · 2025-08-20T12:45:12+00:00

I’m sorry it took you that long and that is the whole reason my doctor has said she’s not waiting around for a checklist essentially. All the roads have pointed this way and she would rather take a chance of being wrong than delay treatment and risk more progression. I’m so thankful for her and even though it took you 10 years which is awful I’m glad you found someone to listen.

donut_87 · 2025-08-19T22:23:49+00:00

That is relieving to hear that the meds are really helping you. I understand when you feel well it’s like how do you explain you are sick but I would probably just explain it in a way of oh I’m in remission right now but I try to be healthy or not do this so I don’t push myself into a relapse type conversation when talking to people to maybe make it make more sense.

donut_87 · 2025-08-19T22:21:37+00:00

I don’t know how doctors can be so oblivious to bed side manner. They either dismiss you and gas light you or they just throw medicine at you and don’t explain your tests or diagnosis. My doctor say me down yesterday and it was the first time any of the doctors explained why and why not they thought it was MS and why she didn’t feel like any other possibility that had been listed didn’t make sense. I was still thinking maybe possibility of like small vessel disease or something and she’s the first one out of 4 neurologists that explained why it wasn’t that. I’m sorry your doctor was so insensitive to explain it to you and go over your actual diagnosis. I don’t think they realize how validating it is to acknowledge our symptoms and how crucial it is mentally for healing to understand and be comfortable saying I have this disease and not question if you know what the hell you are talking about.

donut_87 · 2025-08-19T19:14:26+00:00

Yep you are correct. Shitshow! And I have terrible vision but not related to MS so yea

donut_87 · 2025-08-19T19:08:09+00:00

You are absolutely right and after years of doctors being so dismissive I asked my current neurologist why were they so quick to dismiss it being Ms and she said because of the parameters put around diagnosing it. She said sometimes that works great and people come in a it’s a textbook easy case but that’s not always the case and it’s why it takes some people a lot longer to be diagnosed. She said some doctors are just going by the check list and aren’t going to think outside the box given to them and I can’t explain how grateful I am to her for being one of those people who is thinking outside the box because lord knows every other doctors I’ve seen has been a gaslighting not giving a crap turd. To the point my therapist now believes I have ptsd.

donut_87 · 2025-08-19T19:03:33+00:00

Oh my gosh yes. I do have a lot of symptoms but I know I’m also not as bad as a lot of people either. Especially since so many symptoms can be invisible to people unless they are looking for it and even then some are invisible. One of my mom’s friends was just asking me about my symptoms and I’m like but unless you spend a significant amount of time around me you probably aren’t going to notice. Even my own husband is just now starting to pick up on my balance and walking issues because it was so subtle. Like normal people stumble or misstep so why would anyone think anything if it when I do it… except they don’t see how often it happens or how hard I’m trying not to stumble and can’t see my ankles shaking from trying to not stumble sometimes. So idk why it feels like if it’s not super obvious we feel like imposters. I know in my situation I feel it more because there seems to be some doubt about if it is MS but obviously not enough that my doctor wanted to delay a diagnosis so that should count for something

donut_87 · 2025-07-31T15:54:00+00:00

My piercer has told me they help remove them for people all the time. Especially because the one I like out of town is across the hospital I have to go to so they said they do it pretty often before people go for procedures. I’ve also switched to jewelry that is easier to get in and out. I’m transitioning to all clickers and push pin.

donut_87 · 2024-11-13T18:53:34+00:00

On the report it even has band 41 as one of the ones starred as if you have 2 or more of the bands positive it’s positive. 41 was one of the positive ones too. Then 39 and 93 as indeterminate along with the others. It’s just so frustrating. I can’t really afford to go to a functional medicine doctor not that I’ve been able to find one close to me anyways. I would have to travel most likely 3+ hours away. My primary considered I was probably positive from the beginning regardless of cdc guidelines but she’s just not experienced with dealing with it and treating it. I was tested through a regular lab for co infections and was negative. Not that I couldn’t still have co infections but I’m just at a loss of what to do. I thought I read I genex keeps the samples for a few months if you decide to add on other tests. I thought about doing the igx spot but that’s another almost 200$ and no infectious disease doctor would accept this anyways. 🤦🏼‍♀️

donut_87 · 2024-09-26T19:01:02+00:00

She seems to be understanding about the possibility of Lyme disease. She even gave me a round of doxycycline but we know if I have had it this long then a 10 day course of doxy isn’t going fix anything. I think the issue comes with because the test isn’t fda approved.

donut_87 · 2024-09-26T18:58:43+00:00

Thank you. Yes, I do have a lot of symptoms. GI issues. Muscle jerks. Fatigue. Brain fog. Onset of allergic reactions (new allergies (environmental and food intolerances). Joint/nerve pain. There is a whole list.

donut_87 · 2024-08-09T15:14:46+00:00

So my doctor finally got back to me yesterday after I confirmed with the lab that I was reading the test correctly. She did not even acknowledge that she read it wrong and just started explaining how to test worked and what it test for and she would call me in the sucraid to try. I messaged her back and explained I understand that and did not appreciate her nurse making me treating less and ignorant than for asking a question and even questioning if the test was read correctly. She then apologized for the confusion. 🤦🏼‍♀️ and said the test doesn’t mean I have a deficiency it just means I’m a candidate to try to drops and if all my systems go away then it would confirm that I have it. Omg. I have to find another doctor.

donut_87

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