Looking Into MS

[ShakespeareMamaX]

I'm still trying to rush this neuro appointment along, but with no success, as of yet.

I'm going in Wednesday to get an EEG to see if I'm having seizures and possibly epilepsy. I'm a bit doubtful, but I guess it can't hurt, right?

Has anyone had one of these? The woman at the doctor's office said it would take about an hour and a half, but I know absolutely nothing else as to what they do.


Also, does anyone here have MS (or experience with it)? Whether I have it or not, I'm definitely dealing with many of the symptoms of it and I'd like to know some possible coping skills for the issues I'm enduring (for details, my previous post was "A Long List of Symptoms").

It's the pain, shaking and seeing that are the most hindering of the issues. I tried to go grocery shopping with my friend today and she said I looked like I drank a 30 pack before I left the house. I was shaking so bad, was slumped over and had to hang on to the cart to just be able to walk without falling. And forget about seeing those signs! Cursed things...they should be bigger! And neon!!!

Thank you for reading this.

Brain signing off...

 

[LittleDudesMom]

The EEG is basically like have an ultrasound when you are pregnant, but in this case it is an ultrasound of your heart.

As for the MS, my sister has been diagnosis'd with it for about four years now. She was diagnosis'd after a period of numbness in her legs that lasted on and off for several weeks. It was a long diagnosis process - probably 6 weeks or so - but she started injections immediately after diagnosis and has had no major episodes (no new lessions) since she began the medications (which means no further deterioration). However, she stopped taking the injections and is pregnant now but will resume after the baby is born.

Everyone experiences MS differntly, some folks have pain everyday, frequent episodes and rapid detioration of muscle control. Others live pain free with infrequent episodes and very slow progression of detioration. Excercise is a real key for living with MS.

It may be that you have something else going on. Needless to say, you need to DEMAND particular tests if you feel something is going on that the doctor is not addressing. Take your health in your control and demand further testing to find some answers.

Sharon

 

[smallworld]

Actually, an EEG is a measure of brain waves. The technician will connect electrodes to your scalp and then hook you up to a monitor. The neuro will then read what your brain records to see if there are any abnormalities. My daughter had two EEGs a couple of years ago, and they were not painful at all (just annoying!).

Good luck with the testing.

 

[Big Bad Kitty]

Yes, and EEG is measuring your brainwaves. An EKG is an ultrasound of your heart.

My mom has had MS for 30 years. Hers comes and goes. She has good days and bad days. Some days she needs a cane. Some days she is a dynamo and nothing can stop her. Some days she gets debilitating migraines and sleeps all day long. Some people have chronic, where it gets worse and worse and never gets better. My mom's is the kind that gets bad, then goes into remission. It's a tough disease to diagnose because there is no real thing to pinpoint and say "yep, you have MS". It is basically when other things have been ruled out. Treatments vary due to the wide spectrum of symptoms.

In the past 30 years I have seen treatments get better. Once when she was in the hospital years ago, a doctor grabbed her and made her run. He thought he could make her "shake it off".

Moron.

 

[LittleDudesMom]

thanks for the correction guys - guess it was too early for me to be reading and responding to medical information!!

 

[ShakespeareMamaX]

No worries, littledudesmom.

At least, you know what an EKG is. Most people I talk to get those mixed up.

I had one of those, too. Crystal clear! Hehe

 

[flutterbee]

I'm sorry you're going through this. If you haven't already found it, here is a link to the MS Society that gives some really good information:

http://www.nationalmssociety.org/

For people with chronic illness, and I think especially so with MS, it's really important to listen to your body. When we're healthy we're able to push ourselves without too much negative effect on our bodies. With MS, and other chronic illnesses, it can make your symptoms more pronounced. So rest when your body tells you to.

(((((hugs))))) I hope you get answers soon.

About the EEG...go in with clean, dry hair - no mousse or gel, etc. Take a comb to detangle your hair after...you might want to take a hat to wear out of there. Then wash your hair again when you get home.

 

[ShakespeareMamaX]

Haha! Thanks for the advice about detangling and the hat. I have a sensitive head, so I hope it doesn't hurt!

I'm checking out that link, too.

 

[Sue C]

I have relapsing/remitting MS. Was diagnosed in 1989 and had symptoms since 1983. I also have a seizure disorder diagnosed around 1990-1991. The neuro said the seizures may be related to the MS and might not be. I say they must be 'cuz I didn't get them 'til after the MS!

The others have explained the EEG test. I brought a big scarf (a Babushka--haha) to wear on my way out 'cuz the glue/goop they used to attach the electrodes messed up my hair. It is hard to wash out...unless things have changed since I had mine. I even had a 24-hour EEG once. Fun fun.

The things that helped me were joining the National MS Society (free) and going to the newly diagnosed meetings. I asked all the questions I wanted, and I was with other people experiencing the same thing. I was so glad I went. (and husband came along which was a good thing) I also joined an MS support group. This also was very helpful. I haven't gone in quite awhile, but in the beginning I really needed it. If it turns out you do have MS, I would definitely take the newly diagnosed classes and join a support group (a live one). Oh yeah, there were also seminars on MS that I used to go to. Very informative.

If you have any other specific questions you would like to ask me, please PM me. But like Sharon said, MS affects everyone a little bit differently and there are different "types" of MS.

p.s. I understand your frustration about having to wait for the neuro appointment. It took a long time to get in. I went with a neuro who is well-known in my area for working with MS patients.

Take care,
sue

 

[ShakespeareMamaX]

Man...that EEG was rough. 28 sticky things put over sand that was rubbed, painfully, into my scalp, on top of the marker that felt more like a knife poked all over my head to mark it.

I fell asleep and then could barely get up to leave. The results should be in by Friday so, you bet your bottom, I'm going to harass my doctor's office to get them before the weekend.

This salt, lemon, sand stuff is going to be awful getting out of my hair. Now, I see the need for a hat.

One more question (for now. ). Am I allowed to just get a spinal tap? Like, without seeing a neuro? Can I request to have one now and my doctor will have to honor my request?

I can't keep not working or...living! I've heard bands on your spine (or in the spinal fluid, maybe?) added to white matter spots on your brain are a sure sign of MS.

 

[flutterbee]

I know you're in a hurry to get a diagnosis, but you should let the neuro order any and all testing.

The neuro should order the test as he should be the one reading the results. You also stand the risk of the insurance company denying coverage of the test if it isn't requested for the right reasons. For example, my GP ordered an MRI of my spine, but the insurance denied it. Had my rheumy or neuro ordered it, more than likely it would have been covered.

 

[Sue C]

I agree with Heather. Let your neuro handle the testing. I never had a spinal tap. The white lesions do not show up on my brain on an MRI. My neuro diagnosed my MS by his clinical examination of me and from my symptoms. He said the lesions are probably deep within my brain where they cannot be seen on the MRI.

Actually, if nothing has changed from when I was diagnosed, I was told there is no DEFINITIVE test for MS. I don't see where a spinal tap will help you. A lot of times other diseases must be ruled out as part of the process of getting diagnosed with MS.

Hang in there and let the neuro take his next step. I KNOW the waiting is hard! I had to wait SIX YEARS for a diagnosis. Do you know how hard that was to wait? I don't know how long you have had symptoms (or I forgot), but 6 years was a long time for me.

I feel the panic in your "voice" on wanting to know if you have MS or not. And if you do and you are like me, you will feel relief of knowing what you have. Then you are able to move on and deal with it. For now, take a deep breath and try to relax.

Hope you hear from your neuro soon!

Hugs,
Sue

 

[flutterbee]

From what I've read, Sue is right. I know of a woman with MS who didn't have a spinal tap and one who did. It depends on your symptoms and your doctor and probably some other things.

You have a lot of symptoms that pretty much seemed to hit all at once...a lot of very debilitating symptoms, too. While that's bad for you, it's probably good in terms of being able to get a diagnosis faster.

 

[Sue C]

I somehow missed seeing your PM. I will look at it now and answer. Sorry about that.
Sue

 

[Sue C]

Wondering how you are feeling today. Did you get the results of your EEG yesterday?

sue

 

[Marguerite]

You mightn't need a spinal tap. I've had one done, they're awkward at best because you have to lie flat for hours afterwards.

The EEG - the first few I had, they used that ghastly goop that seems to set like Araldite. The last one, though - no goop to set. It was a bit gunky but washed out OK.

Let the neurologist organise any testing from here. It might save you pain, energy and money. Time - you have plenty of that because if it's MS, nothing is going to speed things up in any way.

My neurologist seems to have a working hypothesis with me, that I have a form of MS. I've had this for 24 years now!

Heather's right about you needing to listen to your body. Sounds like you're already doing this- you used the shopping trolley a a walking frame. It's what I have done for years.
Here's a tip - you know how the trolley is difficult to steer, to change direction? Well if/when you get a walking stick (or similar) you put your stick into the trolley, angled so the tip of the stick touches the diagonally opposite corner at the front. You can then use the handle of the stick (which you're holding, up near the trolley handlebar) to push the front of the trolley. It really is much easier on the arms to do it this way.

For example - I hold the stick in my left hand. The tip of the stick is pressed against the right front of the trolley.

Using this method, I can corner far more easily these days.

I hope you get some answers soon.

Marg