Multiple Sclerosis (MS) Support Group

This community is a place where members can discuss current events and weigh in on what's going on in the world.

0 Online

AusSue 08/15/2013

Hi I am currently going through my 1st flare up since going on Gilenya Feb 11. This one has been a bad one with losing vision in one eye & strength in left side, neuropathic pain in face & couldn't walk far as fatigue kicked in. I have been struggling with this for several weeks & it has not been easy. I have had a few extra challenges thrown in like a really bad virus with a cough that has lasted since June 8.

yesterday went to local Dr but he checked my legs & was not happy as lots of swelling. Thought maybe dvt but hoped not. Referred me for ultrasounds. Wanted them done urgent but there was no appts left for wednesday or thursday so got an appt tomorrow (friday). Today woke up & when had shower had large red lump on front of right leg, inside & back of left leg. Tried to wear the stockings(pressure), hurt too much & felt like cutting off circulation so tried socks & same happened. Swelling seems to have got done but pain is there. Left arm has now taken numbness & pain to neck so dont know what that is. May have to go to Dr in morning, but don't know how as ultrasound is at 9.30 so br ready to leave on electric w/chair at 9 incase raining. Have got a neurology appt at 1.30

Wanted to off load, thanks.

ChrissyH 08/15/2013

So sorry to hear this. Have u been given anything for the flare?
What is dvt? I'm not familar with that.

mamak1118 08/15/2013

AusSue -

That is very urgent! A dvt can lead to a pulmonary embolism, which is potentially fatal. Not to freak you out, but it definitely sounds like you may have one (or more). You should have that ultrasound sooner rather than later. Believe me, been there, done that - don't ever want to do it again. Call your doc; if he doesn't listen, find somebody who will.

Kristi

Orsova 08/15/2013

I had a dvt a couple of years ago and what I discovered was that lack of movement can definitely contribute to this.

My doc sent me off for an ultra sound immediately (as in drop everything, go now, I will ring ahead and tell them you're coming) and I then had a course of blood thinning injections (I have NEVER been so glad that I can do this myself!!) and then a course of oral meds.

The warning about the pulmonary embolism is very sound.

Hope you get some urgent attention and then relief.

AusSue 08/15/2013

Thanks ladies. Have been & had ultrasounds & lady who did them doesn't think they are dvt but could be superficial vein therapy. Said to go to the Dr tomorrow as they will have the results then (hopefully) but definitely on Monday. Whatever it is it is very painful & black patches right up to inside of knees which I can't bend.

Got a taxi coming in 30 mins to take me to appt with neurologist so hopefully he will give me something to get me through this flare if that is what it is. I have written down HEAP OF INFO FOR THE Dr (sorry about capitals). Hurting & not functioning on left side still. Got to look up date of start of flare.
Thanks for listening

Anne8 08/15/2013

Good luck! (I think it is deep vein thrombosis. . .)

lchoppel 08/16/2013

So sorry to hear of your recent health conditions. My thoughts and prayers will be with you for a speedy recovery.

ezone 08/17/2013

I hope you have a good recovery. Glad that there are others who can give you advice. I know nothing in this department, but glad that you are getting it treated.

Best of luck in recovery of this. Keep us posted on how it goes.

AusSue 08/17/2013

Well I saw neurologist & he thinks there is definiteley something wrong with my legs & it should have been seen to quicker not stuffed around like it has. I don't know what it is but I do know it's very painful & can't pull socks up at all as it hurts right down to ankles. Will call Dr tomorrow & see what he says.
At this stage don't care what it is, just want to know what it is & how it can be treated as the pain is overiding even the strongest pain killers.

AusSue 08/17/2013

Forgot to say 3 new lesions on brain too.

mjideas 08/20/2013

So sorry Sue. I have read a couple articles of DVT being linked with less mobile MS patients. (low risk) I'm stuck with Heparin 3 times a day when hospitalized.

http://www.ncbi.nlm.nih.gov/pubmed/22286104

Just be careful of the Gilenya because of cardiac side effects, What does your Dr. say?

Feel Better.

Melanie

deleted_user 08/22/2013

Have you been down a lot with this flare? My first big one I was in rehab getting PT to get back upright and got a deep vein clot and had to go on coumadin/heparin for a few wks. I had been down for a couple of weeks. Any previous history of blood clots?? Elevate your leg and stay off it till you have the ultrasound. I was using heat on mine but if your doc hasn't seen you or your leg I wouldn;t do much else but keep it up and stay off it as much as possible. Their is always a danger of a clot moving so if you have increased pain and swelling or shortness of breath, chest pain please go to an ER-you do not want a pulmonary embolis (clot in your lung). Hope you get better!

Join the Conversation