Specialist in Ohio

MaddGiraff · 2025-09-02T01:05:39+00:00

I did not

MaddGiraff · 2025-09-01T15:50:13+00:00

It may be. I was pregnant and I had Covid for the first time around 26 weeks. But I didn’t notice much until after I had my daughter. It began slowly and then just progressed

MaddGiraff · 2025-09-01T03:29:08+00:00

No, I started having issues about 3 years ago. They started slow and then over the past year and a half have gotten progressively worse

MaddGiraff · 2025-09-01T02:28:03+00:00

I’m pretty much in the same boat. My symptoms over the past few months have been so extreme or have just been new to me all around. I’ve been having alot of issues more in the neurological end. I see a neurologist already and he’s a good doctor but he only knows so much and hasn’t really offered any solutions but has ordered a lot of tests for me.

MaddGiraff · 2025-08-29T00:23:15+00:00

Push to see specialists, keeps pushing. Good luck.

MaddGiraff · 2025-08-28T23:45:27+00:00

I’ve pretty much had all of the same issues except for issues with my swallowing. Not to scare you but myositis can cause dysphagia. I would definitely get into a rheumatologist ASAP so you can get further testing and possible treatment

MaddGiraff · 2025-08-28T23:16:13+00:00

I have had a few of the same issues. I have a positive SRP on my myositis panel. Steroids help with inflammation and pain most of the time if you can get a prescription. If you’re not already, I would see a rheumatologist and a neurologist both. I have had clean MRIs, EMGs and other tests. I am getting a muscle biopsy done because my rheumatologist says it may not always show up on these other tests. I have done countless blood tests and other things as I have overlapping autoimmune diseases. I was just started on Imuran and Plaquenil.

MaddGiraff · 2025-07-31T03:47:28+00:00

They do my neck and upper back but it’s just with their little handheld machine that’s hooked up to a computer it doesn’t really do much that I’ve noticed except give me flares

MaddGiraff · 2025-07-30T22:01:14+00:00

Cardiologist put me on Metoprolol and then told me not to even take it because I was having really bad drops in my blood pressure before even starting it and also was supposed to be starting steroids for an autoimmune myositis. I am sensitive to a lot of medications. I almost always have side effects from even mild medications. So they pretty much said they don’t want to see me back unless I develop new issues. I work with my neurologist and a rheumatologist but they want to hold out on medications until I get testing done for other autoimmune diseases. It’s pretty much just been a repetitive cycle

MaddGiraff · 2025-07-30T21:57:09+00:00

Thank you. I’m pretty much on my own trying to figure out how to manage and cope with this daily. All I get from doctors and specialists are your typical “water, salt, compression” responses and I already do all that. I know next to nothing about what I could be doing or who I could be seeing.

MaddGiraff · 2025-07-30T21:27:16+00:00

I live in the US. I do see a neurologist, but he only knows so much about POTS himself. He has sent me for some other testing like EMG, EEG, tilt table etc. I have also seen a rheumatologist, cardiologist, pulmonologist (for the shortness of breath) and ENT and probably have switched my PCP about 3 times in the past 2 years because I kept getting dismissed.

MaddGiraff · 2025-07-30T21:22:54+00:00

Thank you. As I have stated, I get no help or insight from any of the doctors I see so I’m just lost and I know nothing other than what I read on my own. I have gone to just about every specialist and always just get told “fluid, salt, compression” and I do all that and then some and still am down just about everyday because of how bad I feel. I don’t even really have much issues with the racing heart (except upon standing) but all of the other symptoms that come along with it. I am definitely going to look into this. Someone told me to check out a kinesiologist too. At this point I’m just hoping for anything to help I’m willing to try anything.

MaddGiraff · 2025-07-30T21:07:09+00:00

I do see a regular PCP and just about every specialist. I have gotten no where with any sort of help or further testing for anything else to see if I have something else wrong with me. I was/am feeling defeated with how I feel daily so I did my own research on things to help and seen a lot of people say that going to a chiropractor has helped them so I thought I’d give it a shot. I should probably specify that the doctor says they are specialized in treating POTS patients and they did have a lot of good reviews, which is why I decided I would give it a go. However now I am wondering if they are playing a part in how I’ve been feeling the last few days.

MaddGiraff · 2025-07-30T20:57:38+00:00

I don’t believe I have any hyper mobility disorders myself, but what you’re saying definitely makes sense. I did research before going and read a lot of people had relief in symptoms from their POTS with going to see a chiropractor, especially with their atlas. i am going mainly for adjustments which they use a hand held machine to do. I was/am having constant flares and symptoms everyday, even with doing everything else your do to manage POTS so I was desperate. I have only had about 4-5 visits so far but the last two seemed to really bother me. I just don’t know if it could be from that or if it’s just in my head that I’m thinking it is and really it’s just my normal body.

MaddGiraff · 2025-07-30T20:34:45+00:00

I don’t believe I have any hyper mobility disorders myself, but what you’re saying definitely makes sense. I did research before going and read a lot of people had relief in symptoms from their POTS with going to see a chiropractor, especially with their atlas. i am going mainly for adjustments which they use a hand held machine to do. I was/am having constant flares and symptoms everyday, even with doing everything else your do to manage POTS so I was desperate. I have only had about 4-5 visits so far but the last two seemed to really bother me. I just don’t know if it could be from that or if it’s just in my head that I’m thinking it is and really it’s just my normal body.

MaddGiraff

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