I hope you all had a lovely weekend and are all raring to go on this fine Monday morning, nope me neither. I had a bit of a tingly morning yesterday but it was no big deal, I was relaxing with my Mum while Phil took the girls to the movies and the day was quite low key.
I didn't have much that I needed to do, just prepare the dinner for when they got back, tidy up a little and do some laundry. It isn't like I "over did" or anything but for some reason my MS decided to remind me how much it loves me by giving me a great big hug.
Now I am not entirely sure if this is what they call an MS hug or not since I am being investigated for cardiac issues too but all I do know is that when it takes hold of me it is unbearable. I feel like I am having a heart attack. I have such pain in my chest but worst of all, I can't breathe. I strain and strain to try to suck enough air into my lungs but I just seem to be unable to do so. Sometimes I have pain in my neck and heaviness in my arm so there is always that little voice in my head that says "but what if it isn't an MS Hug, what if it is something wrong with my ticker?"
I get my heart monitor on Wednesday and will wear that for a week. I have somewhere fancy to go on Sunday (a surprise for Phil's birthday that I have planned) so I am worried about trying to disguise it in my slinkly clothes, I am hoping it is discreet. My cardiologist is taking my symptoms seriously and isn't just brushing it under the carpet, he said he would rather rule out anything cardiac than just assume it is MS. I have more faith in him than I do in any of my other doctors, I know I am in good hands. He has said that his gut feeling is that is it NOT my heart so I keep taking comfort from that however it is hard to not freak out when I have chest pain like this. The whole of last night I just couldn't catch my breath.
I felt light-headed and I won't lie, I was slightly panicked by it. Not being able to breathe is scary stuff! Of course a couple of glasses of wine helped me to relax but lets face it, the reality is that alcohol isn't good for my heart either. What is a girl to do? I have read that some Neuros will prescribe Valium for occasions like this, for when one of these hugs takes grip but my Doctor won't prescribe me anything. I am on my own for now with this one (as well as the other symptoms).
I have woken up this morning and feel the same. I still have chest pain and shortness of breath and I sure hope it doesn't last all day because I have another MRI today at 6.15pm. The thought of laying still in that tube with this feeling of not being able to breathe is quite frightening. I usually have to do positive "mind speak" and take myself away to somewhere nice (usually the lovely beach at Fanabe, Tenerife) on a normal day when I have an MRI as I don't like the enclosed feeling of it, I get a little claustrophobic. Last time I asked them if they could give me something to help me calm down but they said no, they weren't allowed. They advised me to go to my Doctor before-hand to get a prescription for something to help me.
I have asked for something to help me relax before from my GP and she said no so I am thinking fat chance however, I have just booked an appointment for this afternoon with a different Doctor (the one that finally took me seriously last year about my symptoms and referred me to the Neurologist and Cardiologist). I am going to DEMAND to be given something to help me, surely they can't just let me deal with this on my own?
So enough about me, how are YOU?
Can't help but say that your GP sounds like a bit of an 'arse' - It's really common for people to have meds for high anxiety situations. I was given just 6 x 2mg diazepam for lp and I only took 2 an hour before and it just takes the edge off instead of that caged/cornered animal feeling. Hope you get a better response from your other doctor.
ReplyDeleteLouise x
I too hope all goes well for you. You are in my prayers. I KNOW the feeling. This latest flare up of mine has introduced me to the "hug". Not pleasant and the feeling of not catching your breath is extremely frightening. I never have problems in the MRI because I simply view it as another place to sleep, LOL....can't seem to get enough of it these days! Valium does ABSOLUTELY NOTHING for me, BUT that doesn't mean it won't work for you. My suggestion....if you have someone driving you to and from, I would take something OTC like Unisome or something like that (if they work for you). Hard thing, this MS....EVERYONE IS DIFFERENT. Absolutely makes it the most difficult thing I've ever dealt with. I know you will get advice from everyone, but only you know your body, so speak with your GP and you two together should be able to come up with a solution. Prayers being sent your way....God Bless....there ARE better days ahead, it's just that us with MS HAVE to TOTALLY enjoy them when we get them.... ;o) TAKE CARE OF YOU!!!
ReplyDeleteSherri
Thinking about you Karen xxx
ReplyDeletekaren you are having a terrible time of it lately, it must be due to stop, do they not think that you need steriods,i dont know if all your symptoms are a new relapse,let me know how you get on today,just sleep through it close your eyes and drift.xxxxxx
ReplyDeleteHi Karen
ReplyDeleteTried sending you a *REAL HUG* so the ms hug would leave you alone..guess it didnt work.. sorry :( Hope your day gets better! If you cant disguise your heart moniter, do as I did... I had to wear one also, years ago before the ms diognosis..and it was during the summer.. I added some blingbling to it. A little cover for it, with tons of rhinestones and blingbling. May do that for my eyepatch now..figure I am stuck wearing it, may as well make it look nice. You are a beautiful lady, so, moniter or not, you'll pull it off. Not to worry! Go BlingBling!!
I was given 3 valium to relax me for an MRI....that is crap they said no. I am so pissed off at the way people are treated over there. You should demand it. That is bullshit!!!!!! So sorry you are going through this. I love you xxxxxx
ReplyDeleteIm right there with you,I had the " hug" about a month ago,didn't scare me but was incredibly painful,the chest pains were unbearable,thinking of you every day and hope things get better.
ReplyDeleteI hate that all these Dr's waste our time with un necesssary test cause they don't have answers,there course of action is ok,do this test here take this PILL-UGH.
Seriously they need to come up with a different term than HUG,sounds nice for something so awful.
I hope you get the answers you seek. Demand something to help calm you... like Adivan or Xanax (I know the drug names are different in UK). At the very least ask for the meds for this procedure (they may justify this demand) and store the extras away for a really bad non-test day as long as drugs you're asking for are not counteractive to what ever the doctors have given you for MS. What's your GP's logic in denying you med's to calm you, did she say? So sorry you have to go thru this. The heart monitor's pretty small (at least the one for your dad's recordings) so I think you'll be able to store it away in your pretty "birthday" dress. Is this a milestone b-day for Phil?
ReplyDeleteI love reading your blog:) It helps stay strong and see that there is a life after MS. My aunt has MS and I am slowly loosing my vision in my left eye and am having high episodes of anxiety, depression, dizziness, numbness in my right knee and bladded issues just to name a few. I do not have insurance and am a complete loss of where to turn. I seen a doctor last year and he told me yes my white blood count is up and he does not know why. So have me a prescription for naproxin and told me I had being stages of arthritis in my knees. Um ok I did not know Arthritis caused all these other issues. I hide all of this from my husband my children and my parents.....mostly because I am afraid they will tell me its all in my head. I have never felt like this before.....thank you
ReplyDeletedont know why it says anonymous, but this is Becky:)
DeleteKaren, I am sorry that you are having all these troubles. Hope you can get some good news real soon. xxxhugsxxxjessiexxx
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