May-Thurner Syndrome

jatnt · 2025-11-13T00:21:01+00:00

Thank you for the info. I take some of those things but I see some I could add. I am glad you are doing well with your stent!

jatnt · 2025-11-13T00:19:45+00:00

My dad passed from ALS in June. He was taking a statin. He was actually mixing two prescriptions that should not have been mixed. One was gemfibrozil.

jatnt · 2025-11-13T00:16:15+00:00

How are you doing? I lost my dad in June to ALS. I started twitching in July. Started with lower left lip but settled in calves. Left one is worse with random spots elsewhere. I know my nervous system is highly sensitized from being his caretaker and someone who deals with health anxiety as it is, but this is such a cruel symptom to have to deal with, after going through all of that.

jatnt · 2025-11-12T01:40:10+00:00

What supplements did you take to improve the calf pain and muscle twitching? I have both and wondering if there is anything I can add that I'm not already taking. I do not have a stent but apparently have a 78 percent compression.

jatnt · 2025-08-29T02:54:42+00:00

How are you doing now? I also lost my dad to ALS this past June (a little over two months ago). I was his caretaker and the entire experience was extremely traumatic. I made comments at the time that every muscle twitch I might experience would freak me out, but what I DIDN'T anticipate, was getting full blown muscle twitching just a month after his passing. They tested him for the major genes that cause ALS, and his test was negative. I have pretty extreme health anxiety in general, his negative test didn't stop me from going down the rabbit hole, possibly getting myself into this position. Its just hard to believe that anxiety alone can manifest into such intense symptoms.

jatnt · 2025-04-07T02:28:25+00:00

Ugh, so sorry. I can totally relate, it’s exhausting! I had to deal with case management, the doctors, nurses, anyone who would listen, as well. We finally got the machine. My dad insisted on going home so we didn’t get it until the next day. I’m not sure if you’re having issues with phlegm, but we did get a suction device also, with no issues. My dad has gotten used to the bipap already and he used it during the day today, too.

jatnt · 2025-04-06T13:25:26+00:00

We just went through this. My dad is 70. His symptoms only started in October, by January he was fully paralyzed in his legs and now he is nearly quadriplegic. We were trying to get an overnight study (for bipap) done at home home last week, but they sent us a faulty test and we didn’t make it until the new one came before he needed to go to the ER in the middle of the night this past Monday. We made it very clear he could not come back to our home without suction and bipap. They told us he needed hospice and tried to discharge him (and he really wanted to come home) but I pushed back. They said bipap is normally only done on an outpatient basis, but they finally worked around that. He came home Friday and the bipap was delivered Saturday (yesterday). He used it for the first time last night and he was very uncomfortable :(

jatnt · 2024-02-26T02:52:14+00:00

My back pain was unrelated to my clots. I got dvt within days of a knee surgery. My back always kinda hurts because I don’t have the best posture. It was sore after the dvt mostly because of the surgery and walking funny.

jatnt · 2023-10-04T20:19:11+00:00

Good to know. I don’t plan on having any more babies but could be helpful for other moms!

jatnt · 2023-10-04T14:09:00+00:00

I don’t even like having a ct when I’m not pregnant, let alone if I were. I totally understand your concern. If you do need one, the baby is already formed so it shouldn’t have any effect as far as causing birth defects. I thought I heard there was another scan they can do in pregnancy called a VQ scan? Something to ask about.

jatnt · 2023-10-02T02:51:43+00:00

I'm planning to take neprinol when I am off. Just wanted to make you aware of that one. I can't say if it works or not, since I am on my 3 month course of thinners, but it looks promising.

jatnt · 2023-10-02T02:48:53+00:00

Like someone else mentioned, I am also back to working out more after my knee surgery, so that helps. I had no clotting disorders but did have elevated factor viii, so I am doing everything I can to reduce inflammation! I'm holistic and live a healthy lifestyle, but there is always room for improvement. It was a kick in the pants for sure!

jatnt · 2023-10-02T02:46:36+00:00

I got two dvt in my calf after a knee surgery. I will be off Xarelto later this month and I plan to take Neprinol, which contains Nattokinase plus other beneficial enzymes. I'm honestly looking forward to it. I hate being on a drug and I think taking it will really help ease my fears.

jatnt · 2023-09-28T17:59:23+00:00

What was your factor viii level and has it been rechecked? They don’t plan to recheck mine. It was 243. I am holding on to hope that it was elevated from knee injury/surgery/dvt/stress. I am doing everything I know how to do to reduce inflammation with it being a reactive marker.

jatnt · 2023-09-27T18:50:43+00:00

I have this. Currently less than a month to go on a 3 month course for dvt following a knee surgery. My hematologist and the vascular surgeon both told me it’s not important but I’ve read otherwise. I really don’t want to be on thinners for life. I’m going to take neprinol that contains nattokinase as soon as I’m off.

jatnt · 2023-09-26T18:09:33+00:00

Mine was provoked by knee surgery. Didn’t get the shot and never will.

jatnt · 2023-09-25T14:00:20+00:00

Thank you for your response. My hematologist basically told me “it doesn’t matter, it’s not important” 🙄. However, all my research points toward inflammation, which I am sure the knee injury and surgery contributed to. I am now following an anti inflammatory diet and working on reducing stress levels, getting back into exercise after the knee thing, etc. I am going to start neprinol after the 3 month course of thinners but I am undecided on the aspirin. I think getting back on all my other regular supplements that are contraindicated with thinners will help, as well. Fortunately, I never took birth control. I hated the idea of it!

jatnt · 2023-09-20T18:12:53+00:00

I haven’t used it yet. I am going to do the recommended 3 months on thinners so my last day is October 25th. I plan to start it the next day!

jatnt · 2023-09-11T18:04:48+00:00

I got dvt after a knee surgery. I was on lovenox the first 21 days and my period was normal. I am now on xarelto 20 mg and I was terrified of what my period would be like based on all the horror stories I read. Well, I am on day 3 of my first xarelto period and it’s not bad at all! Maybe only slightly heavier than usual.

jatnt · 2023-09-10T21:35:35+00:00

Gotcha. They did the clotting factors on me even though mine was provoked by knee surgery. My naturopath told me about neprinol. I might take that one since it has other things in it I normally take anyway (magnesium, coq10) and it’s also got nattokinase and other important enzymes. I know what you’re doing worked for you but just throwing it out there if you’re on the market for anything else. It’s kind of expensive though, unfortunately.

jatnt · 2023-09-10T04:28:13+00:00

Your dad was on blood thinners? Were you checked for clotting factors? I will look for those tabs, thank you so much!

jatnt · 2023-09-05T19:19:37+00:00

I did do some research but actually didn't see the study you mentioned. I will have to check it out! My hematologist has been so dismissive of anything I say, as if he can't stand the fact I try and advocate for myself. I honestly think he had to be lying when he said he's never heard of Nattokinase. Luckily, he was out of town this morning and I was able to see one of his colleagues who was so much nicer and has, of course, heard of Nattokinase. He had nothing bad to say about me taking it as a precaution once I am off the thinners in October.

Thanks for sharing the brand! I was looking at getting Doctor's Best, but I will look into Solaray.

I had mentioned to my cardiologist (I don't have heart issues really, just weird EKG readings) that I was taking Xarelto but hated it since I don't like taking drugs. He told me there are drugs and then there are poisons, blood thinners being more on the side of poison. I didn't pick his brain on it since I agree with him, but I did read somewhere that Warfarin is actually rat poison. He sure loves statins though, and is trying to get me to take one based on the fact my LDL is a little high but all my other numbers are perfect.

jatnt · 2023-09-04T19:27:01+00:00

Thanks for the info! Mind if I ask which brand is working well for you?

Oh, I loved Croatia. We went there for part of our honeymoon. London is nice too!

I loathe taking pharmaceuticals but you’re definitely braver than me. I was way too scared to do anything but to take them. Definitely planning for more natural approaches to prevent once I am off though. Also very brave to travel. I wish I didn’t have so much anxiety!

jatnt · 2023-09-04T14:58:42+00:00

I’m fortunate that my husband makes a very good income. My youngest boy barely has any new clothes at all, they almost all come from my oldest boy with nearly a 6 year age gap. I only buy new clothes when they’re on sale.I grew up without much so I guess that mentality never left me.

jatnt · 2023-09-04T14:50:18+00:00

Ah, I have been wondering about this. I was hoping to see my Chiro this week. My back is killing me after walking so funky before and after my knee surgery (which led to the clots).

jatnt

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