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Posted 6/26/2008 5:31 PM (GMT 0)
 

 I went for my MRI on Tuesday. I was told by my Neurologist that it would probably be a couple of months before I would get it but to my surprise I received a phone call on Monday saying they had a cancellation and I could come in on the Tuesday. I was so grateful but when I went to go into the wee tunnel I freaked out. I managed to do the brain scan but when they tried again to do the spine scan I freaked out again and started crying. I was so scared and embarrassed, I felt like I let myself and everyone else down. I am so lucky to have gotten that spot and then not to use it....I want desperately to find out what my problem is as I just seem to be getting weaker by the day and I am having so much pain and cramping. How and ever the ladies were really lovely and told me I wasn't the only one that day that couldn't manage and they suggested that if the doctors didn't get the info they needed from the brain scan and they definitely needed the spine scan that I could go to my GP and ask for a mild sedative. How do you get past that feeling of being in a coffin? I am so anxious right now about everything that seems to be going on with me, and I try my best not to moan to my husband as he is worried sick. I am normally so active and always down to the shops. Now I don't dare to drive because I can't manage the clutch very well and I feel so dizzy, I wouldn't forgive myself if I were to hurt someone else so for the last two weeks I have barely left the house. My pal was so sweet she bought me a really pretty walking stick, but my ego has a problem with the thought of going out in public looking like and old lady. I am forty five so I am no spring chicken but I still feel a sexy young woman not a granny on a stick. It is hard to think that this is it. If this is MS, this difficulty walking could go away couldn't it? It comes and goes right?

Posted 6/26/2008 6:22 PM (GMT 0)
Oh Gooster!

I am so so so sorry about your terrible experience.  I know for sure that you are NOT the only person who has a problem with the MRI tube.  It is quite frightening for many people.  I am not at all claustrophobic and I will still tell you that it is not a lot of fun.  I keep my eyes closed and I breathe real easy and slow.  I also keep thinking about the fact that I can come out if I need to - that I am in control.   A lot of people have success with the mild sedative.  Most here take a low does of valium.  I am very happy that you got the brain done.  That is the important one by the way.  It might be all you need.

I am also 45 and I too have trouble using a cane or walking stick do to pride.  It sounds like we have very similiar symptoms.  Please just go ahead and use that walking stick.  Once you start, you will see how much better you feel about the extra stability you gain from it.  I have several canes now.  I have come to have some fashion fun with them.  If you see yourself as a sex young thing, then you can keep on with that even with the cane or walking stick! 

It was so good to hear from you.  Please keep us posted as to your diagnostic process.

Posted 6/26/2008 9:51 PM (GMT 0)

 Thanks so much for being there to understand. As you will well know it is a very personal experience and everyone copes with things in their own way. I told one of my in-laws about not managing to get my spine scan and was given a row and told that there is nothing to those scans. I'm like Aye, right. So as well as my other symptoms I now have a sore tongue from biting it, lol. My husband who is even more claustrophobic then myself was very sympathetic though. I don't even think it is a phobia thing, I think it is more like the thoughts that go through your head at that time. Logically you look at the machine and say to yourself I'm not in any real danger I have a wee button to squeeze if I want to come out, it doesn't hurt, but it feels forever what it would be like to be in a microwave coffin. Well thanks again for listening to me and well just for being there. I am very grateful.

 Gooster  

Posted 6/26/2008 11:25 PM (GMT 0)
Gooster, I had my first MRI without a sedative and I thought I was going to lose it several times. I told them in the ER I did not need a valium. Big Mistake! The only way I made it through that first scan (one and one half hours) was by doing a lecture in my head (How a bill becomes a law). (Yes, Gretchen, I am such a nerd. LOL!)  I teach Political Science. Since that MRI, I have happily taken a mild sedative for my other MRI's.
Posted 6/26/2008 11:45 PM (GMT 0)
hehe you said it not me!!!!  (((nerd)))

Posted 6/26/2008 11:47 PM (GMT 0)
Gooster!  Do the valium, I am not thinking that the whole "bill to a law" type thinking is going to work for regular people.

Posted 6/27/2008 4:27 AM (GMT 0)
Gooster, I am so sorry some folks just don't understand how it feels in those dang things!  My hubby laughs at me when I quake at the thought of another MRI! But I too am semi-claustrophobic and it's ONLY in that dang tube that it brings out the worst in me and makes me panic... it seems to trigger every sub-muscle twitch, every numbing nerve pain, and every inch of spasticity that could hit me too... and by the end, I'm in tears. But the worst is the coffin feeling, so please don't beat yourself up over that... what my techs at the MRI place do for me and it seems to help is to lay a cloth over my eyes and it shields me from seeing the tube so close to my face... I am so grateful for that simple cloth! I then pretend it's like a spa and try to remember all the favorite places I've been to in the country until she rolls me back out.

It's like nerve pain, until my hubby experienced his long thoracic nerve pain (and explained to his folks just how excruciating and horrendously painful it was to him- trust me I was SOOOOO amused!) and I was able to calmly point out to him that his experience with that pain ONCE is my daily experience with that pain throughout my body when my body so chooses to "flare up" (as it is right now in both legs). 

Others just don't understand.  So don't beat yourself up cos they don't ... they can't help it and you're not whatever they think because they just don't know.

Posted 6/27/2008 10:32 PM (GMT 0)
G! Are you saying I am abnormal? LOL!

I cannot stand having them place a cloth over my eyes. The very thought makes me feel even more claustrophobic. I always refuse it. During my last MRI they placed a mirror so I could see them in the control booth. It helped alot!
Posted 6/28/2008 2:12 AM (GMT 0)
Barb, the one I am stuck in would not allow a mirror for any perspective... unfortunately its seriously close to my face so that the moment I open my eyes I am in that horrible feeling of flight to get out! ... I go again on Monday for a lower lumbar one... I am thankful for the cloth for me, it works.

Has anyone ever done one of those "open air" MRI's ? I've wondered what that would be like... could be worth it to get away from this tube if I have to get these alot.

Posted 6/28/2008 2:41 AM (GMT 0)
Here is a link to open MRIs.  They used to be inferior in imagery but with advances in technology they are starting to catch up.  The biggest problem is finding one.  They are not as common as the total tube ones that most of us have experienced.  They even have ones that you can stand up in.  Those tend to be for small areas though like neck or sinuses.  You could always ask for an open MRI.

http://www.openmri.net/

Posted 6/28/2008 10:33 AM (GMT 0)
Thank you all so much for sharing your experiences it is actually quite comforting to know that I am not the only one that MRI's freak out. Can I ask you all a couple of questions. First, the difficulty I am having with my walking. In the morning I wake up and although my legs are quite stiff they come around alright but after I have been walking for a few minutes or have to take the stairs, my legs gain about a hundred pounds each and I then just start shuffling, the sensation is that I have elephant feet, along with the electric shock and tingling. Relating to your own personal experiences if these things have happened to you do they come and then go away for a while or even go away all together? As I have not been diagnosed with anything other than limb weakness, cramping and spasming, parathesia, vertigo, probably BBPV and sleep disturbances (That was what the nuerologist wrote to my GP) Second, I have been experiencing extreme headaches, three , four times a day, I take a couple of paracetamol and they seem to tame down but some wake me up in the night. The Amitriptiline they have given me has helped me sleep better than I have slept in dear knows how long. But the headaches are so strong they wake me up. Can any of you relate to this and if so is there any thing you can tell me? Finally, I am having spells of vertigo that I feel like I have been on a drinking spree, and like I have a hangover, you feel rotten and the world burls. Have any of you kind folks experienced this and if so any solutions? We went out to a pre wedding meal with some pals last night and they offered me a drink I told them I didn't need one I was already to the spinney bit. lol. Back to the question, has
I have agreed with myself not to look up any further info on MS because it could be something else. However, I am finding a great deal of comfort from having you folks to talk to. So many of you share similar experiences that I am grateful to be able to come here for advice and comfort. TA. As for the open MRI that would be so good but unfortunately the NHS at least in my area doesn't provide open MRIs it is only through prive insurance like BUPA which I am not eligible to get because my problems are pre-existing. Hind sight is twenty twenty they say, if only I had went private years ago. Never mind I was seen to this time so quickly I don't think private could have been any faster. I bought some magnesium for the cramps but the pills are huge, my husband broke it apart for me and the rough edge caught in my thoat, I thought I was chocking. Surely they must make them in smaller tablets eh? Thanks again for letting me bend your ear so to say.
Posted 6/28/2008 6:59 PM (GMT 0)
You all crack me up- Gooster- you are my hero! You made it through the brain scan with no sedative despite your fear! I knew I would need the valium and still I have to keep my mind busy. (not with bill to law...um....but with memories of vacations thank you) The mirror is very good for me- I watch those little techs in their window and make up stories about them in my head ;) The cloth- good grief no!- who said it reminded them of the spa? I nearly ran shrieking from my first facial when then put some hardening goo on my face and heated it up. "Um.... I fink ur gun hab to tak dis off" That's how you talk when your lips don't move. So facials, airplanes, MRIs and crowded spaces all equal a bit of clonazepam or Valium for me.

Other things- You may not always need the cane, or you may. My symptoms come and go and haven't involved my legs mostly, though balance sometimes. I hope that you may get a recovery from this if it's new symptoms. Headaches- oh yes, knife like stabbing ones that are always worse when I am having an exacerbation. They did wake me up some times which was very frightening. I tried amitriptyline but it made me strange (...er than usual) and so I can't take that. I tried a migraine med, creepy dreams, so I take atenolol (25 mg) in the morning, tylenol and that's it for the headaches unfortunately. There are other meds, I just don't have a lot of luck tolerating side effects and being able to keep working, driving and caring for kids. The vertigo I also get which they think may link to a lesion on my brain stem. Who knows really- someone make us the T-shirts "I am not drunk, I have MS" because also sometimes I slur a bit. Do keep us posted on your MRI results, i hope you get some answers soon to what is going on. Willow
Posted 6/28/2008 10:01 PM (GMT 0)
Thanks willow. And by the way you are quite a giggle yourself.
Posted 6/28/2008 10:31 PM (GMT 0)
LOL, Willow, I'm the spa woman with the cloth... it's my solace, I'm good with it... thank goodness for it... the mirror wouldn't work for me, the peripheal of that tube just sends me shrieking! Isn't it how great how different we all are but how unreal the disease is equally different for all of us? I keep that foremost in my head cos though our symptoms may get "similar" it's always different for us all.

Gooster, do not read into more symptoms...honestly... I started lurking here before I got my dx cos a dear friend of mine recommended this great place... and it did have so much solace that it wasn't just my Imagination... but I didn't read up on all the ins and out of MS on purpose because I wanted my body to unravel itself to the doc and the neuro to earn his keep so to speak ... and yep, in my pissy mooded visit with him that brought about the dx because my right eye was full blown ON at the time, I told him that in my frustration that I was being EXTRA good and NOT pre-studying this disease even though he'd already mentioned it several times to me! He always smiles at me when I get like that... he's so good at realizing the frustratiions of this disease. So be good to you, log the symptoms, keep them in front of your doctor, make him/her work on it, keep the journal front and center to track it all and no matter how minor the thing is, NOTE IT. That's what I've learned.

Good to have ya here, good to chat with you and hope the sedatives help your future MRI's. Don't let them make you feel bad for not making their job easy. :)

Posted 6/28/2008 11:29 PM (GMT 0)
www.whatisms.site88.net
Posted 6/29/2008 2:32 AM (GMT 0)
Gooster- you are from the UK I take it... not Irish are you? Anyway I am 31 and the symptoms you are speaking of are very familiar to me. I cannot stand the MRI and when I was first diagnosed and did not take anything It was dreadful now I at least look forward to my special drugs! Get the drugs it makes is so much easier! Oh and as for the cane, I am like you and won't use it b/c I am embarassed and b/c my three year old loses it when she sees it, "mommy whats wrong? your leg hurt? I get you bandaid?" So I feel like the trauma it causes her far outweighs the benefit it does me!LOL! Someday I will and I know it can be sexy b/c I watch the show "House" and that man is so sexy with that cane!!!LOL!

Posted 6/29/2008 1:00 PM (GMT 0)
Thanks D, what a nice welcome. The idea of a journal is a great idea and maybe there will be some pattern I can notice as well. I will start that tonight. And the cloth thing might work for me, not that the law suggestion was that bad, kinda funny because I am a 4th year legal studies student at Napier, and if I had to think about any form of legislation it bores me so I want to go to sleep.lol. And T, yes I live in Scotland. HMMM...House you think he is sexy eh? Too cheeky for me, but I love the program. Another thing funny all this thinking about the walking stick I had a dream that my husband had gotten me this really swanky stick with rubies and diamonds and where ever we went people would come up to me and say it was beautiful and make a fuss over it. The way that I interpret that is all the input I have been getting here has been so positive that my subconscious mind must be accepting your comments and making me feel better about the whole thing. So thanks to all of you for your thoughtful words. Hope all of you have a lovely rest of the weekend.
Posted 6/29/2008 4:26 PM (GMT 0)

Gooster,

That is a great dream about the walking stick!!!  It cracked me up. It does really seem like you are getting to a better place about having to use a stick or a can though and that is great!  So clearly Barb's (completely nerdy) suggestion of thinking about how a bill become a law maybe actually have some merit!  Don't tell her that - it will go right to her head. 

Posted 6/29/2008 9:57 PM (GMT 0)
Head swelling!  Oh; that may not be a good thing with ms.  LOL!

Posted 6/30/2008 6:09 PM (GMT 0)
You are right about feeling better about the stick I went out today with it and I really did feel okay, I didn't feel like everyone was looking and pointing. I am really pleased with my neurologist right now, he e-mailed me with my scan results. They came back normal. I am sooo pleased but now I feel I am back at square one, my walking seems to become more difficult each day which right now seems far more important to me than even all of the other annoying and even painful things I am going through. Mostly because I feel like I am losing my independence. My mind tends to go ten a penny and I am wondering where this is all going. I live in a house with stairs and climbing them is such a chore that if my legs got much heavier I wouldn't be able to take them, so I start6 thinking does this mean we are going to have to get a bungalow so we are living on the flat or ora chairlift so we wouldn't have to move or are these problems just going to be gone one day. I drive a car with a clutch and between feeling dizzy and not being able to manage the clutch I am terrified that worst case scenario I won't be able to drive anymore or if I can I will need to get an automatic. There seems so many things to take into consideration. I managed to get a visit with my GP and he felt because the scan showed normal that I don't have MS. That is great but I don't have a name or a resolution to my problem. My neurolgist will see me with in the next couple of months so maybe he will have another path to follow. Have any of you ever had normal scans but still have the problems.? Itold him about my headaches, he suggested that I up my dosage of amitriptiline and I have been recommended for physical therapy. I hope you all don't mind if I continue to hang around I can't tell you how good it is for me to have you to share with. I don't feel so much like I am travelling this journey alone and well I need someone to hold my hand right now.
Posted 6/30/2008 9:45 PM (GMT 0)

Gooster,

You are welcome here for as long as you would like to stay.  You are a wonderful addition.  I love the things you say - "mind going ten a penny".  Anyway, we all understand the confusing world of being in diagnostic limbo.  So, please stay and post as much as you want.  There is something very therapeutic about talking to someone that has shared your same experience.  I am happy that your MRI is clear but frustrated that you still have no answers.  We will stay right here with you until you get those answers.

Posted 7/1/2008 9:09 AM (GMT 0)
Thanks Gretchen,
I am feeling so fortunate right now because when ever I e-mail my neurologist he e-mails right back with in the next day. I wrote him yesterday and told him how happy I was that the scan was clear but I told him that I was still having the problems and my legs seem to be getting weaker all the time. I told him we are scheduled to go away on holiday to the states in two weeks time to see my new grandson and I don't know how I will do the journey. He replied very kindly that he didn't think that we would come up with a quick fix for my holidays but perhaps we could come up with a slow fix, and that he would look things over again and try and fit me into his nearest slot. Well you can't ask for more than that. I have a lot of faith in this fellow and along with the journal that I started the other night maybe he can put the pieces to the puzzle together.
Posted 7/1/2008 5:09 PM (GMT 0)
That is so great that your doctor answers your email!!!  Mine does too, it is a great way to communicate back and forth - very time wise.  I am so glad you have faith in this doctor.  That can make all the difference.  Where in the states will you be visiting??  I can't believe you have a grandson!!!  That will be so fun!! 

Posted 7/2/2008 9:33 AM (GMT 0)
Yeah I am really excited he was born on June 24th. My son lives in Maine, so we are going over for a fortnight. we are flying into Boston and then we are going to drive up. We don't like the wee planes to Maine and there is always a three or four hour lay over so we are just as well to drive up. This is our third grandson. My daughter has given us Ethan who is 5, and my Son has given us Timmy 2, and now Hunter. My kids got married early just like me. I am really proud of them. My daughter is a sonographer and my son and his wife are correction officers. It will be nice to get away they say a change is as good as a rest. Due to the way I have been feeling we won't be doing all the activities we usually do but it will be lovely just to spend time together.
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