Just rant

[Eriewa1]

Hello everyone. Merry Christmas!!! I'm have been really depressed lately. I just dont feel good. Every time I eat I get real nauseous. My bowels aren't moving the last time I went was a week ago. This has been going on for over a month maybe once a week if I'm lucky. And dizziness has been unreal I just move and the world in moving. My eyes are never focusing I feel like I cant I just cant take this. My keyboard is fuzzy as I write this.The headaches even with botox injections are off the charts pain in my left side of jaw. I just dont know what is Aps. And what is MS. My INR was at 2.0 and they say it's good as you know I dont go to Pittsburgh until the end of January. I hate feeling like this and to top it off I have no energy to even try to put up the tree.im more then sure others are having problems and issues worse than mine. And I'm so sorry. I just needed to vent for a minute

[MaryF Administrator]

Hi, that sounds really difficult, if I were you I would contact my main Hughes Syndrome/APS specialist, and your GP, to do you blood tests, not just for Hughes Syndrome/APS and the usual tests, but also to look at your Folate, Ferritin, D, B12 and a full Thyroid panel, not just your TSH, if any of these things are low, you are likely to feel very unwell. A slow thyroid is notorious for causing constipation and other issues, including depression. Make sure they are very thorough with your tests. MaryF

[KellyInTexas Administrator]

I’m afraid I don’t know much about MS, other than the debilitating fatigue and brain fog and loss of coordination. ( attacks yo spinal column as well as optic nerve.)

I have to think the tummy troubles are might abdominal angina.” Dr. hughes speaks a lot about this. It’s sludging of the blood to the vessels to bowels.

My gastro called it vaso congestion- or mesenteric micro clotting. It caused ileus for me.

I don’t understand being given an INR of 2.0

You should be seen by someone else ( your GP? The Prescribing dr of the warfarin your on now?) until a specialist can see you. An internist can see you in the meantime to get you to 3.0. That is very basic starting point. ( if you are symptomatic raising to 3.0 is within the guide lines - if you have demonstrated one single clotting DVT event. It should be raised for subsequent DVTs or for any arterial clot.

You will need an internist anyway. I’m sure you must have one. Who’s managing the warfarin now?

A diagnosis of APS guide lines for your particular parameters should be followed. 2.0 INR is not guidelines.

rheumatologyadvisor.com/hom...

[Lure2]

If you can manage to find a Specialist of APS he will perhaps find that you do not have MS as it has been APS all the time. It is rather unusual to hava both MS and APS but it can exist of course. We know that MS and APS are often mixed up.

Then the Specialist also knows that it is so important to have the correct therapeutic value of the Warfarin and the importance to do bloodtests often enough to keep the INR at a stable range. A vein-test should be taken at a lab at the hospital.

As both Administrators have said an INR of 2.0 is practically not anticoagulation at all. They obviously do not know that APS needs an INR of least 3. I need 4.0 but I am also Lupus Anticoagulant positive.

INR of 3.5 - 4.0 is very common and that is why we have Sticky Blood.

[Eriewa1 in reply to Lure2]

Hello thank you so much for talking the time to reply my MS was DX 14 yrs ago I did have a spinal tap to make sure it was MS and in pass year I had clots in my legs and after a million blood test I got the DX of APS. Like I said I just cant tell if symptoms are one of or the other. My great grandfather passed from a bowel disease underlying MS and back then everything was a secret I found out from his death certificate on line. I'm scared confused in pain my body is rejecting me and I dont know what to do. I had a full life at one time . I'm 52 a now my life is my sofa my house and that's about it. I have even lost all interest in arts n crafts i have hundreds of dollars in wreath making stuff and paintings I just cant bring myself to do any of it. What do you do when you start to feel this way ? I'm on Cymbalta 60mgs daily 5mg every other day and 7 mg opposite days of warfarin Baclofen 3 a day Meclizine 3 times a day and Tysabri once month. I'm not on a lot of meds thank goodness. I see people on tons of meds and I dont know how they do it. I am grateful that I'm not as sick as others and that's why I just need help to get some of my life back. Again thank you so very much.

[Lure2 in reply to Eriewa1]

Hi again,

As I am from Sweden and do not know much about the different anticoagulation-drugs you use there it is a bit difficult to help you to find out if that new Doctor you will see in January 2020 in Pittsburgh is knowledable of autoimmun illnesses (working daily with APS).

Good if someone in the US could help you with this! I know it is difficult to have APS in the US. Very sorry about that.

If you once have been up to an INR of 3.5 - 4.0 (what was you therapeutic range now....?)

you could find out if you feel much better and then you would probably know it is not MS but APS and that the blood is thinned enough. It must be difficult to get blood when you have so thick blood also. Try to read about what has been said lately about APS. A film Mary showed here the other day you should see. Prof hughes is talking there!

Hope someone can help you and that your daughter can take her driving-license.

Please stay with us as you may get help from our many American members also and let us know how it goes in Pittsburgh in January!

I have fantastic help from my hospital here and I know a lot of this illness now after being on this site for at least 6 years. I selftest every third day and know my body and can keep my INR around 4.0 and feel ok. I take a vein-test when I need to and at the moment with the new machine for selftesting I can manage quite good. It is so unfair that some of us must feel so bad and without help from those rare Specialists there are.

[HollyHeski Administrator]

Hi, you have really good advice from my fellow admins, so I can't say more, other than get some immediate medical advice that they are suggesting.

It doesn't matter what others are going through, you at this moment come first, please rant away, your untitled to, as you are feeling so rough you need to share.

I want to give you a big hug and say keep trying to get some relief.

Regarding the bowels, if your not eating because of nausea then they will slow down/stop. You can be given something for the nausea, but sadly this is also a side effect of constipation, don't make sense does it?!! When my blood is thick my bowels get lazy, opposite effect when my blood is properly anticoagerated.

Let us know how you get on.

[GinaD]

Time to consult with Cleveland Clinic?

[jetjetjet]

Well you have heard from the best . Now it's up to you to muster together your strength and get to see a new PCP or who ever takes care of your INR - i have been there myself years ago . it will help --best to you and feel better soon . C & J here in NH .

[hihannula]

Hi Eriewa1

I'm so sorry you are having such a hard time. What I do for my nausea, is a cup of hot organic ginger tea. In minutes my nausea calms down. Shouldn't drink alot of it because it can cause the INR to go up. Do your best to be kind to yourself and keep telling yourself better days are ahead, because they are. You can vent anytime on this site and never worry about others having it worse. We are here to support you and one another. Big Hugs!!! Holly

[Inalotofpain]

I know how you feel! Ugh!