Happy Valentine's Day. I was so lucky when Cupid shot his arrow into my bum almost three years ago and gave me my lovely soulmate, Phil. He is my rock, my support, the person who can make me laugh on the good days and smile through the tears. I never knew real love until he was brought to me on a Virgin flight to Miami. I am forever grateful for him. I just needed to share that on this special day.
So, yesterday I went to my Doctor to ask for something to help me relax for my MRI. I wasn't able to breathe (MS Hugs?) for two days and I was nervous about feeling panicked in the test. I thought I might have a bit of a fight on my hands and maybe (with hindsight) I went in there with an aura of battle but I really did end up with a fight.
I told him what I had been experiencing and that I would please like a prescription for Valium or something similar to help me relax and get rid of this horrible feeling of not being able to breathe. He told me that since I hadn't had my official diagnosis yet that I was just suffering anxiety. This was a bit confusing to me because was he saying that if he had a letter from my Neurologist confirming that my "probable MS" was in fact confirmed, would this now NOT be anxiety? What a joke!
Telling me I have anxiety is like a red rag to a bull because I was fobbed off for two years as an anxiety case. I told him that yes I was anxious but this was due to not being able to breathe, you know that little thing of feeling like you are suffocating would make anyone feel bloody anxious.
He told me he couldn't give me anything and I should ask my Neurologist. I explained to him that I don't see my Neurologist until April and that I was having my MRI today and a Lumbar Puncture the next day. I said "Please just help me get through the next two days, that is all I am asking from you". He looked at me like I was stupid and said "are you worried about having an MRI?" So what if I was? Isn't claustrophobia a recognised condition? He made me feel pathetic. I told him that ordinarily while I don't love having an MRI and being enclosed that no I wasn't worried about it, I was just having problems with breathing. Seriously, you wouldn't think it would be so hard.
So, he gave me a prescription for ....... wait for it ...... THREE whole tablets. Yup, three! What did he think I would do with more? Overdose? Sell them at the school gates? Bloody ridiculous. I was SO. FLIPPING. MAD. I was literally shaking with frustration. I popped one of the pills and took myself off to the hospital for my MRI.
FUMS and FUGP!
I sat there with my Mum waiting to be called in and my Mum asked me if I was OK and if the Valium was starting to kick in. I actually wasn't feeling it. I don't know if it is because I got myself so upset at the Doctor's that the tiny yellow pill wasn't man enough for the job but I honestly didn't even feel it. Maybe I have a high tolerance level to drugs?I sat there in the waiting room and looked at my Mum and said "I just feel so sad". I started to cry and explained to her that I am afraid that the next couple of tests will come back negative and the Neurologist won't give me an official diagnosis (even though he did in December when I was a private patient) based on my brain MRI showing lesions. I am sad because I feel like I will be just discharged with no answer, no help, no support and a GP who just keeps telling me I am anxious.
Last time I checked anxiety didn't show up on Brain MRI's, make you go blind or cause all of the other symptoms I have been struggling with. Are we really back here? This is the same Doctor that I had a melt down with and told him if he agreed with the other Doctor that my numbness, tingling etc was due to anxiety attacks then to give me anti-anxiety medication. He obviously didn't agree THEN because he referred me, so how can he say this to me now?
Maybe my lack of breath IS due to anxiety right now and with everything I have been going through then it would surely be understandable. So, then HELP ME with the anxiety. Why do I feel like I have to fight to be heard, insist on getting help? No bloody wonder people get depressed.
My MRI went OK, they had to re-do a couple of the pictures because I moved. I was struggling to breathe so it was probably when I was straining to get air that I moved too much. I asked the radiographer if they saw any lesions (I had already told her that I wouldn't be upset if there was) but of course they aren't allowed to say anything. I have to wait two months for my results.
Today I have my Lumbar Puncture. I am not as nervous about it as I thought I would be. Maybe the nerves will kick in when I get to the hospital but right now I actually feel OK about it. It has to be done so why worry? I might call the hospital in a little while to ask if I can take the other Valium that I have so that it has time to kick in before I get there. I am able to breathe today so that is good and apart from heavy, tingling legs I feel OK so today is a good day to get a needle in my spine.
So enough about me, how are YOU?
I feel for you Karen! These doctor's are a pain in the A$$. I understand completely. I get an MRI today and (just like you) am thinking the same thing...what if it doesn't show anything? Does that in any way lessen what I feel (or don't feel as it were, LOL)...NO! I FULLY expect to be told it shows nothing and try to be written off also. My neuro said she was going to get an MRI of the head and cervical area ONLY. I emailed her yesterday (prior to the MRI department calling to set the appt) and asked her if we are going to do the MRI, I think we should do the head, neck AND spine. My thought process was...if we are going to do it...do the whole damn thing AND this coupled with the fact that my original flare up which started two months ago started in my lower back (so what if there are lesions there and no where else)? So, I figured I'd ask. She spit me back an email and stated that an MRI of the spine would NOT explain any of the symptoms I'm having in my head...that said it all to me BECAUSE any of us with MS KNOW that there can be lesions on the spine that DO cause these symptoms! So, I know TRULY believe she is a quack, BUT will go through with the MRI to see what it shows. My full intention is to get the test and take the films to another neurologist, even though I'll have to travel about 65 miles to get there. Makes you wonder if they had to have schooling for this "specialty" why the hell do I feel like I know more than she does? NOT ONLY THAT, but after I got that email...the radiology department called to set the appt. with me. I asked the nurse calling me if the MRI was just of the head and neck..she asked me to hold while she looked at the doctor's order....she came back on the phone and said, NO, it's of the head, neck AND SPINE!!!! I believe this doctor just doesn't like patients that are proactive about their healthcare. She must think I'm telling her what to do and this must irritate her...why else would she tell me she WASN'T ordering an MRI of the head, neck and spine and then turn around and do it?!?!?!?! CRAZY! If I didn't like her before, I certainly do not LIKE nor TRUST her now! Why are these people allowed to practice medicine??? THAT'S my only question right now, ya know? FRUSTRATING, IRRITATING and downright ANGER is what I feel and you are right....why do they think people get depressed? Hell, I'd like them to spend just a day in one of our bodies and I bet they would have a whole new respect for what people with MS suffer with and feel.
ReplyDeleteOK...I'm done with my rant. I DO hope you get to feeling better and GOOD LUCK with the lumbar puncture!!! God Bless.
Sherri
hi karen
ReplyDeleteglad ur LP went well i didnt say before but i had to have 2 LPs as the first one they screwed up completly i felt like my right leg was on fire and felt so sick the drs had to stop because i was so destressed so when my neuro said i had to have it done i said i couldnt she agreed they had messed up last time and said i would be sedated next time..... they did sedate me and all was fine but i just hate the words lumber punture now makes me feel soooo sick.... can you not try and bring ur neuro appointment forward to save playing the waiting game? i am back with mine in march... i have no leisons on my brain as yet i have a few on my neck and all down my spine dotted here and there ...... just to let you know even if there are no leisons on your mri it still does not rule out ms i was reading somewhere on a site that ppl can still have ms even if the mri didnot pick up any leisons i dont know how that works but that is what i read hun............ have you had bloods taken if so ask them about the ACE levels mine are always high that also has something to do with it ......any way another great blog hunnie looking forward too tomorrows as always hope you have a great evening and a pain free one to xxx
GEEZ,There isnt much else I can say that is going to help...Thinking of you :)
ReplyDeleteI really empathize with you. I've been being shrugged off as an anxiety case too. The one doctor that did mention MS left. I'm being referred by my GP right now to a neurologist that he has had good experiences with and I'm just trying to stay calm. I'll probably have to have another MRI, at least I hope they take another. Last one was a year ago and I think the new neuro is going to take a new look at everything. With all of that said, I feel the same way and find myself asking the same thing...what if they say I'm just anxious. What I've found helpful (difficult but helpful), is to just keep myself occupied any way I can and try to learn new things. I'm trying to teach myself Italian currently. Then when I do think about everything, I can honestly tell myself that no matter what, I can still continue living. Whatever it is that I have, hasn't taken my life completely away from me. Taking up a crafting hobby like knitting can also be soothing in it's own way if your symptoms don't get in the way. It's just something that, no matter how much you work yourself up over it, there's nothing to do except keep on living and enjoy ALL of the little things you can find. Hope you have a better day today. I look forward to reading more soon.
ReplyDeleteP.S. It's inspiring to know that there are others struggling with the same things and that people are still able to be happy. Nobody is happy all the time, but everybody is happy some of the time. :)