Possible new diagnosis..

[locolala]

Lately I've been having a lot of trouble with my balance, fatigue, and numbness in my hands and feet. DH will have my close my eyes and he'll touch the palms or backs of my hands, and I can barely feel him do it . My last brain MRI showed some spots that require further study, so I have to get another done next week. They also are talking about doing a spinal tap to find out exactly what's going on. I'm a bit scared, because I know they're thinking MS or perphial neuropathy. I dunno which is worse, but both kinda scare me. Keep me in your thoughts please! I'll update when I know anything more.

 

[LauraVV]

Have you had a tilt table test to check for autonomic dysfunction?

 

[locolala]

I think that'll be done too. I know I have an arrythmia so I don't know if that will throw off the test. If they do a tilt test I'll black out from the drop in blood pressure that my arrythmia causes.

 

[mechurchlady]

I have lots of advice but unfortunately none that can help you but one things.

Remember we at disAbilities are here to hug you and help you through the bad days and the scary moments. There are others who have gone before you on your same path and someone on this board may have gone that path or know someone who has gone that path. the best thing about this board is the emotional support they give other members.

I send you lots of sunshine hugs, prayers and more hugs. I hope it is nothing serious and will pray tonight for it to be ok.

Hugs and Dole Whips
Laurie

 

[bookwormde]

The unknown is very scary so hang in there. The symptoms you describe could be anything from a relatively benign transitory condition to some of the more chronic debilitation conditions, only time and test from a major medical center will tell. You are “lucky” since is know there is a specialist center in Baltimore for MS. One thing to remember is that if it does head in the MS direction is that no one scan or series of scans over a short period of time can be definitive, it takes scenes over a longer period of time (typically a minimum of 6 months) with intervening events to really give a good indication.

I know it is not easy but try to relax and work your way through the “process” and keep your anxiety from this and other complication of life to a minimum since this can aggravate many of the conditions which your symptoms are indicative of.

bookwormde

 

[locolala]

Well, they rescheduled my last MRI again so now I'm waiting to go back in for that. I had an appt with my neuro doc yesterday and things had gotten a bit worse. Now my ankle reflexes are very jerky, and I have very little sensation in my feet. He bent my toe up and I couldn't tell if it was up or down. *sigh* They pulled 8 tubes of blood out of me and they're doing a head and cervical spine MRI, so we'll see what happens with that. At this point, I'm just sick and tired of always being so daggone tired. I learned yesterday that the genetic condition I have (NF type 1) and MS are somewhat linked, so if you have NF-1 you might be more prone to having MS. I'm keeping my fingers crossed its a vitamin b12 issue (it's possible, my doc says) but at the same time I'm preparing for the worst, you know? Meh.. ok thanks for listening to my ramble

 

[Libbyt]

Locolala, did you have the tilt table test? My daughter has one coming up soon and I'd just like to get some input from anyone who's had one - mainly so I can help her know a little bit about what to expect. Hers is a full electrophysiology workup, if that helps.

Thanks,
Libby

 

[Belle102498]

Well, they rescheduled my last MRI again so now I'm waiting to go back in for that. I had an appt with my neuro doc yesterday and things had gotten a bit worse. Now my ankle reflexes are very jerky, and I have very little sensation in my feet. He bent my toe up and I couldn't tell if it was up or down. *sigh* They pulled 8 tubes of blood out of me and they're doing a head and cervical spine MRI, so we'll see what happens with that. At this point, I'm just sick and tired of always being so daggone tired. I learned yesterday that the genetic condition I have (NF type 1) and MS are somewhat linked, so if you have NF-1 you might be more prone to having MS. I'm keeping my fingers crossed its a vitamin b12 issue (it's possible, my doc says) but at the same time I'm preparing for the worst, you know? Meh.. ok thanks for listening to my ramble

I went through most of the tests that you are going through, and I went through a TON of diagnoses before they told me I had MS. I wanted to curl up in a ball and die! It was the most devastating thing that could have happened, or so I thought. Once I processed, and soaked up all the info I could get my hands on I relaxed. I have had this illness for 9 years, and ya know what? It isn't that bad. My suggestions if you really do have MS are : 1. Get on a drug therapy as soon as possible (I went on one before I had the definitive diagnosis). There are a few different ones out there, and if one doesn't feel right to you, tell your neuro to switch you. 2. Keep exercising. I know it is VERY difficult, especially at first, but it is so worth it to keep your strength up. BTW, i STILL hate walking on the treadmill, and right now my dog uses it as a napping space . 3. Get plenty of sleep, but don't overdo it. Too much is just as bad as too little. 4. Joke about it! Laughter really is the best medicine, and you will discover that if you are at ease, others around you will be too. They won't know how to act around you, so you have to tell them 5. Get a support system. It doesn't matter if it's family, friends, online, whatever...just get people to talk to. Call your local NMSS and they can give you group meetings. 6. And last, but not least know you can feel sorry for yourself, but not for too long. Make sure you have someone to get on your butt to get you out of the slump. This is my hubby's job

I hope you don't have it, but if you do, know that it is NOT the end of the world, and you CAN cope and be ok. There will be a few lifestyle changes, but they aren't anything you can't deal with. You are going to have to experiment with yourself to find your limits for things. It's ok when you reach those limits to slow down. Find things that make you happy, and keep these things around. I have my husband, my nephew, and my puppy. They all make me smile Once you set yourself up on a path that is right for you, you will feel so much better!

Lots of hugs from me to you! You are going to be just fine!

 

[LauraVV]

I think that'll be done too. I know I have an arrythmia so I don't know if that will throw off the test. If they do a tilt test I'll black out from the drop in blood pressure that my arrythmia causes.

Dysautonomia can cause heart rhythm problems.

 

[LauraVV]

Locolala, did you have the tilt table test? My daughter has one coming up soon and I'd just like to get some input from anyone who's had one - mainly so I can help her know a little bit about what to expect. Hers is a full electrophysiology workup, if that helps.

I've had a tilt table test. They put you on a table. You have some electrodes on leg to check for sweating ability. The only bad part is when they move you from lying to standing position. That makes you want to puke. Is your daughter going to have a thermoregulatory sweat test? Our neuro is at Froedtert in Milwaukee. They told us that there are very few centers in US where you're able to get a good tilt table test/autonomic testing.

 

[locolala]

I'll definately ask at my next appointment if they're going to do the tilt test. As far as exercising, I'm an avid horseback rider and intend to keep doing that as long as physically possible. I've been riding since I was 5 and it's an absolute passion to me. If things progress and I can't ride on my own, I'm going to look into theraputic riding. Hopefully though, this is all nothing major and everythings ok.. but there's the pessimist in me whispering mean things, yknow?

 

[Brightsy]

I can't offer anymore than anyone else here has. Just wanted to offer my support!

 

[Libbyt]

I've had a tilt table test. They put you on a table. You have some electrodes on leg to check for sweating ability. The only bad part is when they move you from lying to standing position. That makes you want to puke. Is your daughter going to have a thermoregulatory sweat test? Our neuro is at Froedtert in Milwaukee. They told us that there are very few centers in US where you're able to get a good tilt table test/autonomic testing.

I do not know about the sweat part. The doctor who is doing our test is a pediatric cardiologist (I guess there are other types of physicians who do these?) at Duke. I know they are doing an EEG at the same time, but other than that I don't know much. She has been having bizarre passing-out episodes that haven't responded to treatment (from an autonomic or simple syncope aspect).

Sorry to hijack, but thanks for input!!