Not sure what is wrong with me.

[LiberalLoner]

Was in the neurology ICU a couple years ago for a week with what was diagnosed as Guillain Barre Syndrome. Got better slowly, then in the last year I've been having bad spells again. Didn't want to bug the docs so I was trying to just tough them out. (Army docs, especially neurologists, are very busy these days.)

Well, this bad spell was a little worse than the other ones and the bad spells are coming closer together and I finally decided to bite the bullet and go to the doctor.

Now, two years ago, my spinal fluid showed ogoclonal bands (something like that, unsure of spelling) that indicate either MS or GBS. The doc thought the case presented more like GBS than MS so I was reassured.

They checked my reflexes. Knees great, ankle reflexes mute (absent) and a positive babinski's reflex (not a good thing) on the bottom of the foot.

Doc wanted me in an MRI that evening and admitted to hospital again. I tried, I really tried. My first time in a traditional small-bore closed MRI. Long very narrow tube. Had a panic attack/claustrophobia. I never even knew I was claustrophobic. Just could not do it. Doctors were pissed, don't blame them one bit, I was being a big baby. Anyway we will try again when there is another opening, but this time the doc prescribed me 10mg valium with another 10 in reserve just in case. Full spine MRI and brain MRI. Hopefully I can get ahold of myself with the help of the valium, this time I will not open my eyes in the tube, and I will be okay.

So, back to the labs today, another dozen or so vials of blood drawn. Lots of tests I guess. Referral to neuromuscular clinic in neurology.

Not feeling that great, low energy, just want to lie in bed all day, have to force myself to get up and do stuff. numb feet and semi-numb legs.

Doc thinks it's either CIPD (chronic form of GBS) or MS or possibly something wrong (tumor?) in my spinal cord/brain. We'll see.

I'm actually more afraid of failing to endure the MRI, than I am of the actual disease. I don't want to fail again. And I have to do it there, Army does not give choices.

Thank you for listening, just wanted to tell my story I think.

Oh, went back home with hubby, who told the doc he'd bring me back in if I got a lot worse, had trouble breathing/swallowing etc. I am glad I'm home, did not want to be hospitalized again.

[intaglio]

1. You'll be fine in the MRI

10 - 20 mg of valium will see to that.

TBH I wish you the best whatever the results show, just remember even MS can be manged pretty well nowadays ... if it is that then you might consider marrying a Republican Presidential candidate but I suggest you forgo the dancing horse. You're not snooty so that won't be a problem.

[LiberalLoner]

6. Thank you so much! I was so mad at myself for failing the mri,

I sure hope a determined attitude, Valium and an eye mask will lead to success for me this next time.

TBH part of me will just be relieved to have a diagnosis. Whatever happens, I will ask my higher power to give me strength.

Thank you again!

[LiberalLoner]

7. Lol at the dancing horse! I am from Montana and know

How to ride a horse though....

[Warpy]

2. Knowing what to expect might make the MRI easier this time

Talk to the doc about the last time and have him order an anti anxiety drug if you feel like you need it.

People who aren't claustrophobic get the heebie-jeebies in an MRI. These days, it's also highly reliable for picking up MS.

Even if it is MS, know that the disease can be controlled for a very long time. Medications are being improved all the time. It's just like any other chronic disease, a pain in the ass to deal with. Once you get used to the idea, it's second nature.

[hedgehog]

4. I'm not claustrophobic, but that loud banging becomes

very distressing very quickly for me. Maybe ear plugs would help?

[Warpy]

5. Yes, they would. If you've got 'em, and they're not looking at your head

sound canceling headsets can be a big help, too. I love mine when someone fires up a wood chipper or leaf blower.

[LiberalLoner]

9. Oh they give me headphones plus I've had other mris done before in short bore

Machines where I got enough air on my face so I wasn't scared at all. The noises and vibrations in those newer machines were actually kind of soothing to me. My only real fear is the fear of not having enough air get to me way in the back of that long tube.

[LiberalLoner]

11. I'll just use earplugs when they do the brain scan. Doing full spine and brain.

[lumpy]

25. The noise, even with ear pugs, is what bothered me to the point of almost pressing the

exit button; but I held on. It was an equisite form of torture to me. Probably the worst medical procedure I've ever experienced including child birth and several operations. I should have been offered a tranqilizer I suppose.
The MRI tech told me there is no solution to the noise factor. Also, chickening out was a frequent occurence.

[LiberalLoner]

8. Thank you so much! I have been given 4 5mg tablets of Valium which I

Hope will help (10mg should do it for me) and I will also use a sleep mask to stop me from opening my eyes.

My main panic was that I felt there was no airflow. I worried about suffocating. Once the machine itself starts up, will there likely be some air pumped in? If not, I'm sure I won't suffocate, they would never put me in there if that was a danger.

[Nay]

15. I also am claustrophobic in those machines, and I have a couple of recommendations for you.

Take the whole 20 mg of Valium. Trust me on that. (Someone else will have to drive you home.)

If the headphones can stream music to you, ask for that. It helped me.

P.S. The docs were assholes for being irritated with you about freaking out. GOBS of people can't stand to be in those damn machines. It's not like it's uncommon, or that you are just being a baby. They were out of line to treat you like that.

[LiberalLoner]

17. Thank you! It might be too much for my size though...

My husband is driving me. Doc's instructions are to take 10 mg half an hour before appointment and 5 mg more right before I actually go in the machine....

They do have the headphones....my main freak out was feeling there was no air. It was so hot and stuffy in there. It was an old style machine, closed at one end like a test tube.

This time I am going to a much bigger, better hospital for my MRI - Walter Reed Bethesda. I am hoping they have the newer mris that are open on both ends with better air flow. I have had an mri in one of those newer machines and was fine with it.

Thanks for saying the doc was being a jerk - I do find military docs harsher in bedside manner than civilian docs.

[hollysmom]

26. I am claustrophobic and have been my whole life - ask for an open MRI

They are more and more common and are distress free. I actually had to have my head screwed into a mask once so I did not move it a milli-bit and that was distressing, but as long as I could raise my arms and touch the screw downs, I was OK.

All MRIs should be open MRIs so much better.

[Downwinder]

3. I just pretend it is one of those massage machines

chiropractors use. Close my eyes and take a nap. If it is MS and they get you on a maintenance drug, you will feel a lot better.

[LiberalLoner]

10. Thank you! I will try very hard to get it done this next time.

[kdmorris]

12. I always have to cover my face with a washcloth

I can't stop myself from opening my eyes, so NOT seeing the tube close in on me helps. That plus the valium should make it much easier! Don't kick yourself too hard - it's more common than you think to feel fear in those things. Otherwise, they never would have made open MRI machines.

And I hope you get the answers you need to move forward with treatment. For me, not knowing what was wrong with me was the worst. Once I knew the issue, I could move forward with treating it/dealing with it.

[LiberalLoner]

13. Thank you so much! :) I actually bought a lavender sleep pillow thing on-line with flaxseed. I am

hoping it will soothe me with the lavendar scent and between that and the valium and telling myself to remember to breathe long slow breathes, I should be fine.

I looked at the bottle I picked up yesterday, and her instructions were to take two 5 mg tablets half an hour before the appointment and then 1 more 5mg tablet right before I actually go into the machine so it will kick in halfway through I guess (it will be a one hour spine scan plus a brain scan which they will probably do at the same time or afterwards.)

I hope that you will be okay with your health problems - I can completely understand just wanting to know what on earth is going on.
Even if it's MS or something even worse, there will be some relief just knowing I'm not crazy, that there is a real reason for the numbness and loss of reflexes. I think they are taking it seriously in part because of the positive Babinski's sign.

[KC]

14. I also

have GBS. Diagnosed Dec 2011. I would not wish this on my worst enemy!!
To me, the symptoms that you describe sounds like CIDP. People that do have CIDP usually go in for IVIG treatments for 5 days and it seems to help them but reading their comments in a group that I belong to online they have to keep going back every few months.
I can't have the IVIG treatment because I now only have one kidney.

It is my understanding that there is an open MRI for people that are clostrophobic but maybe they don't have one at your hospital ?

[LiberalLoner]

16. Oh what a small world! I'm sorry you had GBS too. Are you feeling ok now?

I hope you are! I have stage III chronic kidney disease too but I took the IVIg anyway and it helped me so much! But then I've been getting bad spells, might very well be the CIDP. I'd prefer that to ms anyhow!

They don't have those newer machines at military hospitals. I got a nice flaxseed eye mask that I think will help me get through the MRI.

[KC]

18. I

I had to have my kidney removed due to a small malignant tumor. I got this horrible Guillain-Barre stuff as soon as I got home from the hospital. I had the plasmapherisis treatment instead of the IVIG.

I am really still trying to recover, but I'm ok. I can't walk yet and have to use a wheelchair most of the time, the walker some around the house. I still have the horrible pain in my legs and feet esp at night but, it's not as bad as in the beginning and I am very tired, all the time ! It takes so little to make me feel exhausted. lol

Good luck with the MRI. I actually fell asleep during mine. lol Close your eyes, use their ear plugs and make sure they put one of those triangle pillow under your knees cause it will make you more comfortable.

Take deep breaths, you'll do fine.

I'm sorry you have it too, please keep us posted.

[LiberalLoner]

19. I'm so sorry, I hope you get better soon!

I find I struggle with fatigue since the first bout of GBS too. People think I am lazy I think.

[KC]

20. Thank you

I think that it's just a slow process I guess.

I think that they think you're being lazy is a normal response from people because people look at you and you look normal, so they assume that you are just being lazy. They just don't understand Guillain-Barre and what it does to your system. Like I said I wouldn't wish this on my worst enemy, but sometimes I wish they could just spend one day with it just so they'd be more understanding !

[LiberalLoner]

21. So true! And it adds to our stress for people to judge us!

Like life with GBS isn't hard enough already!

It does take years to get all the way better from GBS. For me, I have something chronic so maybe I will be getting worse instead of better. It's okay, I am lucky to have a husband who doesn't need me to work and access to healthcare. I am luckier than most people. I am grateful for my blessings.

[LiberalLoner]

23. Oh I am glad CIDP doesn't sound too bad! Reassuring for sure!

I honestly think I would be dead without insurance because the paralysis was halfway up my body and almost to my lungs before the IVIG stopped the process. If it would have stopped my breathing and I wasn't already in the ICU I am sure I would have died.

I hope for good health for you! I was happy that the IVIG didn't harm my already ailing kidneys - docs say I have about 31% of my kidneys remaining alive so I'm almost at Stage 4 CKD actually, right at the bottom end of stage 3.

[KC]

24. I know what you

mean. Mine stopped just in time too but the numbness actually went nearly to my neck. After a year the numbness is finally getting better.
Let us know after you have the MRI and if they find out anything. I'm sure there are plenty of other patients that have the same anxiety so don't feel bad. The Valium should work !
I hope everything is ok and that you start feeling better !