Multiple Sclerosis Community
it's not always the MS!
About This Community:

Our Patient-to-Patient MS Forum is where you can communicate with other people who share your interest in Multiple Sclerosis. This forum is not monitored by medical professionals.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

it's not always the MS!

Well, just an update on my status - I've been in the hospital since Thursday morning.  I went in and they ultrasounded my leg, and found a clot, so they sent me across the street to the hospital, and I was checked in immediately.  I think the absolute worst was finding the vein for the IV - it was cold that morning, and my veins aren't all that prominent anyway.  They had to stick me five times before they could get the IV in.  I was actually happy - it was either that or a picc line.

Then they started pumping me full of heparin.  The doctor quizzed me on my symptoms, and asked me if I was having any shortness of breath.  Well, yes, I answered - not mentioning that it's an on again, off again symptom.  They decided to schedule me for a CT scan.  Turns out a little bit of the clot in my leg had ended up in my lung.  Scary!

So I've been in the hospital since then.  I'm not supposed to move around, although the doctors are inconsistent on this.  A couple say that because of all the blood thinners, there's no danger.  My doctor (and a couple of others) say not to move around.  I don't like being bedridden, but I'm feeling very cautious!  I have sanitary arrangements so I don't have to go very far, and with all this medication, it seems like I'm going every five minutes.

The positive things are that I'm in a private room, nice and quiet.  Which is great because I like a little privacy for some things!  And the food is actually not all that bad, although everything seems to smell like instant chicken soup, even the eggs.  We had steak and lobster for Friday dinner.  

They say I'll probably get out sometime Sunday.  They're waiting for my levels - whatever that means - to go down to a point where it's safe for me to move around.  Then I'll have to inject myself with heparin for a couple of days - subcutaneous, thank goodness.  And of course I'll be on coumadin for six months.

They're not real sure what caused the clot, but they suspect it's the birth control pills.  I've been on the darn things for fifteen years - probably it's the cause of my phlebitis in my left leg.  (And that's another thing - don't let your PCP blow you off either.  I went to my doctor twelve years ago with odd swelling in my left leg and new varicose veins, and they didn't take me seriously.  They should have taken me off the bc pills right there.)

So one big thing I've learned from this is that every symptom is important.  Instead of just dealing with the pain, I should have been calling my pcp three weeks ago.  I tend to ignore symptoms, and that's not a healthy behavior.  I was thinking it was the MS, and I was just progressing, when I had something else entirely going on.

Well, as they say - live and learn!
Related Discussions
25 Comments Post a Comment
Blank
1394601_tn?1328035908
I am so thankful that you found yourself under the care of competent doctors!  This could have been much worse!!!  It is so hard with MS to decide if the problem is MS related or something beyond.  

I wish for you a speedy recovery.  I thank you for the lesson!!!  We should all hear the warning!
Blank
1312898_tn?1314571733
Hi Jen,

I'm so sorry, I didn't realize all the things that were happening with you.  What a trauma you have been through!  Thank God you went in for the ultrasound.  I'm sure they are not wanting you up for fear there could be another clot somewhere.  On the other hand, you should be up and about.

Do you have those stockings on, the ones that massaged you up and down?  

I'm glad you are getting the rest you need.    

Hugs,  Red
Blank
1260255_tn?1288658164
Jenny:

I am so relieved to finally hear what is going on with you. I was so concerned and am glad to know that you are getting proper treatment.

Don't know your experience with DVT's; RedFlame is right on target about the compression stockings. For some, post thrombotic syndrome is worse than the DVt itself. My legs are badly scarred from superficial blood clots and I had a year of unrelenting pain and swelling. Fortunately I did not experience the same thing with DVTs.

I recently posted in my journal an entry "Is Patience Really a Virtue?". The gist is how and when do we contact doctors about ailments when our situation is already complex. I ask you to read this, along with others, and consider responding. It might help put together a useful resource for others.

Again, I am so relieved that you got the right call by your doctor who ordered the ultra scan and this was caught in time.

One more day of hospital food and then back home tomorrow!!!

Audrey

Blank
667078_tn?1316004535
I hope you get well soon.

Alex
Blank
233622_tn?1279338505
Yikes! That could have been bad.  Get well soon!

LA
Blank
1207048_tn?1282177904
Oh goodness! I am so glad this was caught before it got too bad! I will be praying you have a very speedy recovery!
~Jess
Blank
1260255_tn?1288658164
To Jen and Others:

I'm sure that Jen is learning more about this while she is in the hospital.  I will use my experience to educate others in terms of clots and PEs.

Right now, Jen is on heparin (the generic version of Lovenox) which helps to stabilize clots and prevent them from migrating or breaking off and traveling through the blood system. With Jen having a pulmonary embolism (the clot that traveled to her lung) , the doctors are being extra careful and keeping her in the hospital to monitor her PTT levels to ensure that the heparin dosage is at therapeutic levels.

During this time, blood tests can be run to determine if there are any genetic factors which may have contributed to the development of the clots. These tests must be run before any blood thinners are started.

Once therapeutic range of Lovenox/heparin has been established, blood thinners are introduced. The drug of choice is Coumadim or the generic equivalent warfarin. While heparin does not break down the clot, warfarin can do so. Once started on warfarin, regular blood tests are done to monitor INR levels (a measure of coagulation or clotting). The normal INR range is considered to be .8 to 1.2; with blood clots the therapeutic range is 2.0 to 3.0, with 2.5 being the desired level. Most people stabilize within the targeted range within 2 months and only need monthly blood tests after this point. The recommended course of therapy is 6 months.

Jen, I hope that your doctors did advise you to get a medic alert bracelet. This is very important while you are on a blood thinner, in the event you were ever in a medical emergency. If you have cash to spare, you can buy a platinum medic alert bracelet for $5,800 and add diamonds and rubies for a few more bucks.

I went for the stainless steel bracelet that cost $29.95. I had no sugar daddy to spring for me!

So glad they caught this when they did.

Audrey
Blank
559187_tn?1330786456
I am so glad they found the clot and were able to keep things from getting worse - much worse.  Sounds like they are taking good care of you.  Will the clot in your lung go away with the blood thinners?  I don't know a lot about DVTs but I do know that even if you are on blood thinners to help the clot, you don't want to have a fall and end up with too much bleeding either.  So, trust your doctors, even if they aren't consistent and just be very careful when you get up and around.  

Please, please keep us updated.  

Julie
Blank
572651_tn?1333939396
Jen,
Your absence here was noted, so we're all glad you checked in, even though the news is not necessarily the best.

Lesson learned again here is it is not always the MS that is causing us problems.  We need to stop trying to second guess what is going on and find a doctor we can trust to take charge of our care.  I know, ythat is easier said than done.

Be patient and let the doctors keep you in the hospital as long as they think is necessary - your prognosis should be good if you keep to the regimen they have outlines.

Thanks for taking the time to let us know what's going on - I'll keep positive thoughts that you will be home in no time at all.

gentle hugs to you,
Lulu
Blank
989689_tn?1333552120
I'm glad you found out before its to late. My mom just had a blood clot in her leg, luckily they found it early as well. Good luck with it.
Blank
338416_tn?1260996698
Thanks for your well wishes, guys!  They've taken the IV line away, although I still have the needle in my arm - guess they want to make sure everything's kosher.

Wow, $5,800!  I think I'll opt for something cheaper...  At the moment they don't want me to wear anything on my legs.  They don't want any more of the clot dislodged.  I had been wearing my compression stocking because I thought that was the thing to do, but Dr. Y told me that it actually was inhibiting circulation.

Thank you, Audrey - they've given me that information in little bits and pieces, but not as clearly as you've done here.  I'm going to show this to hubby too.  It looks like that's exactly what they're going to do.  I'm going to quiz the doc extensively when I see him tomorrow morning.
Blank
Avatar_f_tn
So glad you were able to seek medical help sooner than later!
Thanks for your post. I sincerely hope you are feeling at your best again soon!
What symptoms prompted you to tell a doctor/go to the hospital?
- Jenny
Blank
987762_tn?1331031553
Jen,

I've been watching your posts on this topic with deep personal interest, though i have to admit I was hoping the out come was spasticity and wasn't a blood clot, though its a good thing that you double checked and they found it in time. Your words are wise and a timely heads up!!

"So one big thing I've learned from this is that every symptom is important.  Instead of just dealing with the pain, I should have been calling my pcp three weeks ago.  I tend to ignore symptoms, and that's not a healthy behavior.  I was thinking it was the MS, and I was just progressing, when I had something else entirely going on."

But you see now i'm not sure what i'm suppose to do, if you remember i've been having a few issues with circulation, raynauds with purple feet and hands and now the vein probs. In my left leg and arm this year, apart from them becoming engorged if i'm active or over heating, I also have pain in the left calf. If that part isn't in spasm its hard and I thought it was just the muscle going tight from spasticity. I did speak to my GP about my veins, they were fine on the day but i had pictures of how bad they get and he was pretty adement that it was from my neurological issue.

I have not had many tests so i'm still gathering evidence and have requested an apointment with a local vein specialist, but havent heard back yet, the wheels turn slowly here lol I have so many questions about this issue, I still can't get it out of my head that if your having muscle spasms it could cause blood flow issues or even blood clots but its just an uneducated idea at this stage though i would love that question answered.

Anyway, i do hope that getting this sorted helps with the muscle spasms you've been having!

Cheers........JJ

Blank
Avatar_f_tn
Hi there,
I wish you a speedy recovery, and I am so glad that you are okay?  Well I guess it could have been a whole heap worse!

It's very easy to blame every symptom on MS (both for patients and Doctors), if you are diagnosed with MS it is very easy to blame it for most things, when of cause other options should be investigated.

Thanks for sharing this with us and reminding us about "not blaming every symptom on MS", I wish you a speedy recovery and thank goodness that they got the clot in time.

Cheers,
Udkas.
Blank
1253197_tn?1331212710
What a terrible scare for you and you sound very calm about it all. I guess you are pleased to get to the bottom of it ..but it could have been extremely serious if not treated. Ifound Audrey's information very helpful and interesting.

Meanwhile rest up, take care and sounds like you have no option but to take things easy for a while so don't overdo it when you get home.

Love and hugs

Sarah x
Blank
429700_tn?1308011423
I'm glad to hear that you are in good hands.  Oh my goodness--what a scare! People with MS, who are generally more inactive, have a double-whammy going against them when they're on birth control.  

I wonder if you've heard, or anyone else has heard, of anything that people can do that are in wheelchairs (or inactive) and on birth control pills (or not) to prevent blood clots.  There's a lot of discussion about stretching your legs on long international flights to prevent blood clots.  I wonder if these stretches for people with MS who are quite inactive (even if you have to move your legs by lifting them with your hands) would help?      

People on this forum, including myself, learn a great deal from you, and you're missed when you're not around!  

Deb
Blank
1225331_tn?1333369369
Hi Jen,

I'm really glad they caught your blood clots.  They're nothing to mess around with - especially once they go to your lungs.  I'm sure you realize the seriousness of it.

The private room in the hospital is the way to go.  I'd definitely prefer a private room, too.

I hope you're doing better.
-Kelly

Blank
645390_tn?1338558977
What a scary thing to go through, and I am SO glad they found this and are taking care of you.  Could have been a tragedy.

4 years ago, I had 2 blood clots as well.  One was a very high high risky one. I believe it was a superior mesentary artery, All I know is that is a bad one, and I had similar treatment as you.

After running a huge amount of blood tests, they found many factors of a blood clotting disorder. I will be on coumadin for the rest of my life, and go for monthly blood tests.

I hope you are doing better, let us know.

Michelle
Blank
1386048_tn?1281015933
jen, i am sooooo sorry to hear about all you've been through!!  at the same time, totally relieved and glad you got to the root of the problem in time.

thinking of you and hope you feel much, much better.

xo michelle
Blank
1168718_tn?1366236035
Hi , so glad that you are in good hands, and that they are taking special care of you.

You have been missed on here, so are looking forward to when you can come on back.

Our prayers and thoughts are with you, and know that you are being thought alot about
these past days.

Here's hoping the sun is warm on your face, andd the world seems a little brighter,

take care,
Candy
Blank
335728_tn?1331418012
Hey girl...so sorry to hear about you being in the hospital but glad you made it before something much more drastic could have happened!!  You sure have good timing!  I hope they can get rid of this clot for you and you don't have to stay on the blood thinner's!  Will be looking for an update on your condition and I hope you start to feel better soon!

Lots of hugs,
Rena
Blank
198419_tn?1360245956
Jeez, Jens!!!!!!!

This could of been an ender! I hate to be so frank, but it made it's way to your lung, oh my.

I'm glad you are ok, Jens. Hope they give you more than a once over before considering releasing you.

(((hugs)))
shell

Blank
1045086_tn?1332130022
Hi Jen.  Good for you for persuing this leg pain and for the doc who recognized it as a possibility.  It sounds like you got prompt and effective treatment.  Have they considered putting a fliter in to "catch" any further hitch-hikers to the lung?

Just to clarify....Lovenox and Heparin, and Coumadin (and a few other drugs) are all anti-coagulants or blood thinners.  They work on different parts of the clotting mechanism but all can be used to prevent or treat blood clots.  The injectables are usually started first because they can be given directly IV and start working quickly.  Coumadin has to bild a blood level.

When Coumadin is used long term, routine blood work is done to check for therapeutic levels and adjust dosages, frequently at first and then less often.  It is important to take Coumadin at the same time every day and keep your daily intake of foods consistent (especially things like green leafy vegetable and cranberry juice).

Compression devices and massage are counterindicated once clots develop because of the dangers of dislodging pieces of the clot.  So don't rub those sore legs Jen!

JJ, spasms would only cut off blood supply enough to cause clots if they were sustained over long periods of time.  It is, in fact, the action of muscles that keeps the lower extremity blood flowing in an upward direction back toward the heart.  Scasticity would likely be helpful more than harmful, IMO.

Get home and back here soon Jen.
Mary
Blank
987762_tn?1331031553
How you doing???????

I thought you'd like to know that i just received an email back from that specialist, thanks for the friendly push :p) I'd sent a brief outline of vein (only) sx (mentioned the possible MS dx and the GP thinking its probably another neurological cause) I explained what my arm veins are doing, and also my ankle veins, he says "This is a most unusual problem. I cannot at present think of a cause." ha ha he recommended I first see a neurologist if I havent already but he highly recommended i have a 'Duplex ultrasound' which they perform at his clinic.

I requested an appointment, dont know how much it's going to cost being so close to Christmas i'm not looking forward to the bill, but i think its time for this one to be sorted if it can be or not if it is neurological (autonomatic dysfunction) what ever I dont care anymore, i'd just like it over with!!!!!

Again Jen, thank you for all your time and consideration, its really appreciated :-)

Cheers.......JJ

PS if you can, let us know how your doing.......please!

Blank
Avatar_f_tn
Hey Jen! How scary this must have been! I had been following your posts about the leg pain with the hope that it would get better.

Now that a cause has been determined, hopefully it will get better.

I'm so glad you followed through and found out what it was. Blood clots are bad news, so I am so happy they figured it out and are treating them.

Take care and I hope your recovery is quick!!

Hugs!!!

Texasgirl150 (another Jen)
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Multiple Sclerosis Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
How to Silence Your Inner Critic an...
Apr 16 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eaters: How to Silence Yo...
Mar 26 by Roger Gould, M.D.Blank
1344197_tn?1392822771
Blank
Vaginal vs. Laparoscopic Hysterecto...
Feb 19 by J. Kyle Mathews, MD, DVMBlank
Top Neurology Answerers
Avatar_f_tn
Blank
essdipity
147426_tn?1317269232
Blank
Quixotic1
Washougal, WA
572651_tn?1333939396
Blank
Lulu54
Dayton, OH
667078_tn?1316004535
Blank
HVAC
Durham, NC
987762_tn?1331031553
Blank
supermum_ms
Australia
198419_tn?1360245956
Blank
sllowe