Anyone have MS?? Please help me...

[disneybound2010]

Shoot, I also forgot to mention in my previous post that my Aunt's son has Spinabifida. My aunt was diagnosed when my cousin was about 7. Now, any young child can take a lot out of you, but then throw a disability like this into the mix and it really throws you for a loop. DA never let it get to her. She was still there for EVERYTHING with my DC and never once let her MS get in the way of the extra support and needs of her DS. Again, a lot of how you choose to accept and handle it affects your individual outcome. Good luck to you, Hon. I know how scary this can be and especially with the holidays and young children. I'll be sending lots of good vibes your way. Just try as hard as you can to keep a positive outlook and remember, you are never alone

 

[Gagirl69]

Staci,

You may be experiencing the "MS Hug". I had heard of it but had never experienced it until recently. You have tightening in your chest. Mine also ran around to my back. I talked with my dr about it. It's basically a muscle spasm.
It is quite painful. Mine lasted on and off for about 2 weeks.
All the feelings you are having are normal. I was so depressed when I first started with my symptoms. It's not hard to be depressed when you feel like crap. I remember it like it was yesterday. The fatigue was awful. I was dizzy. I mean, I would lay in the bed at night and the room would spin. I could tell my balance was off. It took me a couple of months to feel better.
MS is different for each person. I do take my multi-vitamin, vitamin D3, and Omega 3 each day. The dr said people with autoimmune disorders should take vitamin D. I am going to join the gym right after christmas. I feel so much better when I exercise. It is NOT the end of the world. Things will get better for you.
Also, people with MS, don't do well in hot weather. It can bring on temporary symptoms. Like when its 90 degrees outside, you can have temp. tingling until you get back in the air conditioning. My tolerance for heat is very low.
Please don't worry, you are going to be fine. Not long after I was diagnosed, my husband said to me. No one knows what is going to happen to them in the future. There are things ALOT worse than MS. IMO. If you need to talk, please don't hesitate to PM me.

To all the others with MS... I am also here if you need to vent, talk , cry or laugh...We all need that from people that truly understand what you're going through.

 

[DawnCt1]

Hi Staci, we know at least 3 people who have MS and all are doing just fine. The therapy options that are available now are really wonderful. One of the people we know is a neurologist who treats patients with MS. He is doing fine and has been for years. I know it must be awful not to be able to talk to a neurologist until next year, but it will be okay. Neurologists, as a group, are not known for their "warm and fuzzy" personalities. If you don't "click" with the first one, keep looking. Don't be afraid to ask questions and expect answers. I had an employee, who after years, and years of having MS, decided that it was a long walk around the insurance company building. (I was the oc health nurse). She got her insurance company to pay for a Segway. It was a great way to get around the building. Her condition was very stable, even after I left. MS has come a long way.

 

[mickeysgal]

Staci, I wanted to pass along my very best wishes and to offer

 

[PITishome]

Hi Staci,

I'm reading through the Disboards tonight to plan an upcoming trip...by the way everyone, great tips! I registered tonight so I could post a response to you.

I'm going through the process of being diagnosed right now. It started with a brain MRI early this year because of dizziness, headaches and being tired. There were some areas of concern, and the doc referred me to a neurologist.

The neurologist I was referred to had me have the MRI done again with contrast and a few lesions showed up. She also had me have a sonogram on my neck area to check for blockages.

Next was a Visually Evoked Potential Test, which involved wearing a set of goggles which have cameras to record eye movements. You follow an LED light around and they check how your eyes respond. They also have you do this sitting and laying flat. They are checking how your eyes and brain process information.

Coincidentally, I'm having this test redone at a specialty hospital here in Pittsburgh tommorrow. It seems like the first test showed some abnormalities and they want to have it redone along with another VEP test which measure how long it takes your brain to respond to a pattern that you look at.

They put some electrodes on your head and you look at a checkerboard screen on a monitor. Since MS affects the nervous system, this is supposed to be a very useful test.

What is frustrating and scary...just like you...my next appointment with the neurologist is not until the middle of January. It seems like forever. On one hand, I'm hoping that they can confirm a diagnosis to begin treatment. But I'm also concerned about that diagnosis because of insurance. I'm self employed and have good health insurance that I pay for myself. With MS on the forms, it will be hard to ever change health or life insurance.

Hang in there Staci. I can't say not to worry, but try to enjoy the Holidays with your family and friends.

Take care

 

[staci]

PITishome.. good luck with your trip planning. I find planning a disney trip to be about the most therapudic thing there is - I even thought I should plan a fake one just to get me throught the next few months! Good luck with the diagnosis... I have actually had that light/eye thing done recently too...

gagirl, I just read something about the ms hug.... I will have to look that up more.. that would make sense with what I am feeling... I know my heart and lungs are okay because they CTscaned and did an EKG< but it is just the craziest and painful feeling...

Some of you have mentioned East Coast doctors.... we are actually smack dab in the center the midwest - Iowa... but my brother lives in Cambridge MA so I would have a connection out east to stay with if need be...

To everyone, thank you thank you thank you. I am doing better with processing this information each day, and trying to keep myself optimistic. As awful as it is to have this hanging over my head for Christmas week, my dh is only working a handful of days in the next two weeks, so he will be home with me and can help me keep my mind occupied...

Happy Holidays everyone.

 

[disneymom3]

Staci--if you are not too far from MN, you could also look into doctors at Mayo or in the Twin Cities. The U of M and the Mpls Clinic of Neurolgy are very highly rated. I see Gary Birnbaum at the Mpls Clinin of Neuro and he is amazing.

FWIW, I do not have any lesions on my spinal cord, only in my brain. If you have to have a spinal tap done, make sure you drink tons of water beforehand. I have heard from many that that does help. Unfortunately I get the headache no matter what I do ahead of time. Drink Coke afterward and lay down flat.

Seems we need to start an MS support thread on the DIS. There are a lot of us coming out of the woodwork.

 

[disneymom3]

Staci, I forgot to mention that a good example of someone famous who I think has done well is Clay Walker. He was diagnosed in '96.

Don't forget good ol' Montel Williams. He is doing well too. Clay takes Copaxone btw.

 

[staci]

Staci--if you are not too far from MN, you could also look into doctors at Mayo or in the Twin Cities. QUOTE]

I had thought about mayo... we are about 4 hours from Minneapolis... we have the University of Iowa about 30 miles away, which is generally known for good docs... but I dont know anything about their neurology dept...

As of right now, I just have the local appt scheduled on the 2nd, and I am going to keep that, because I know it will take much longer to get into the University (they said Feb or March when I called) and I assume Mayo would be the same, and I really want to talk to somebody....anybody.... before that... But I certainly plan to shop around and get the best care possible... I just want to get the initial tests DONE and get the diagnosis so I feel like I can create a plan for moving forward..

Thank you everyone.

 

[PITishome]

Hi Staci,

The test went well last night. They had to do the right eye a couple of times, it seems like the reactions were very different each time. The worst part was that I went back to my car with wet hair from the doc washing out the adhesive from the electrodes. It was 6 degrees yesterday here in Pittsburgh!

I would echo the coments on the Mayo Clinic or the Cleveland Institute, I've heard some really good things about both places.

As an aside, I had some business trvel to Iowa City this summer and I have to tell ya...the middle of Iowa is flat and gets dark at night!

I was actually driving to Chicago in the evening and I made the mistake of following a GPS in the car. It ended up taking me on some real back roads. I mean the kind of roads that I wouldn't see another car for 15 minutes! I was just organiazing my tax stuff a couple of days ago and ran across the paperwork from the trip. I laughed really hard about that adventure!

Take care and have a great Christmas. Please keep us informed on your results.

 

[staci]

I just wanted to come back with an update. I had my first neurologist appt with a local neuro on Friday.

She basically said my white lesions were small and 'unremarkable' in her opinion and that she found them inconclusive, and that I didnt have MS now, but I could in the future. She couldnt give me any explaination for my fatigue, or numbness/tingling and weakness in my limbs, or the restrictive feeling in my chest/back, she wants me to go on migraine medication for my dizziness/balance issues, and she says I dont need to go back to her.

I am even more confused and frustrated now, and have scheduled an appt back with my PCP for this week and will likely ask for a referral to somewhere else.

I absolutely, without a doubt, do NOT want MS, but after 5 years of progressively getting more and more weird unexplained symptoms, MS is the first thing that I have found that fits everything like a glove. Its so frustrating to know SOMETHING is terribly wrong with me, and it is not getting treated at all.

At any rate, thank you so much for all the help before Christmas. Best of luck to all of you.

 

[disneymom3]

I just wanted to come back with an update. I had my first neurologist appt with a local neuro on Friday.

She basically said my white lesions were small and 'unremarkable' in her opinion and that she found them inconclusive, and that I didnt have MS now, but I could in the future. She couldnt give me any explaination for my fatigue, or numbness/tingling and weakness in my limbs, or the restrictive feeling in my chest/back, she wants me to go on migraine medication for my dizziness/balance issues, and she says I dont need to go back to her.

Oh Staci, this paragraph right here makes me think your neuro is an idiot. Those are all MS symptoms and no neuro worth their salt just says "Well, I don't know what's wrong with you but whatever." That description sounds exactly like me. Now, like you, I don't want it to be MS but clearly it's something! I really really encourage you to get a second opinion. Call the U of IA and wait if you have to. Make the trek up to the cities and go to the Mpls Clinic of Neurology or the U of M or Mayo. Actually, I did find out about Mayo that you have to go to their website and fill out a form to ask to see one of their neurologists and explain why you want to see them. So, that might be harder to get into. Seeing a neuro is going to take awhile. EVen for my rechecks I have to make an appt like three months in advance.

Good luck. You are in my prayers.

 

[TheZue]

(((hugs)))

When my mom was diagnosed in the 70s it took a while for her to get a diagnosis as well. She thought she was going insane at first because nobody could find anything But with today's technology there is absolutely no reason for you to get a response like that! I would also get a second opinion.

 

[Tosie]

It's definitely time for a second opinion!!

I agree with the PP - I think the neuro is wrong. You are experiencing classic signs of MS and you do have lesions.

Continued good luck on this journey - we're here for you!

 

[chris1gill]

It might not be MS, but there are plenty of other things to look for. For years they thought I had to have MS, I had all the symptoms, but my scans were fine. My EKG was a little strange, but nothing dramatic. It wasn't until they found my esophagus wasn't swallowing properly and my reflexes were seriously hyper that they started getting concerned and they did a muscle biopsy and did find what I have.

On the other hand, my DD was having similar problems, or the beginning of them, and we thought she had what I have. She had an MRI and she has a problem with her spinal cord and now needs surgery to correct it.

Not everything is a simple case of you have "this" or "that", sometimes it takes investigative work (like in my case), and in other cases it takes nothing more than an MRI... I'd go to Mayo if I were you... It might not be MS, but it certainly could be something nobody is thinking about.

 

[Nette]

I just wanted to come back with an update. I had my first neurologist appt with a local neuro on Friday.

She basically said my white lesions were small and 'unremarkable' in her opinion and that she found them inconclusive, and that I didnt have MS now, but I could in the future. She couldnt give me any explaination for my fatigue, or numbness/tingling and weakness in my limbs, or the restrictive feeling in my chest/back, she wants me to go on migraine medication for my dizziness/balance issues, and she says I dont need to go back to her.

I am even more confused and frustrated now, and have scheduled an appt back with my PCP for this week and will likely ask for a referral to somewhere else.

I absolutely, without a doubt, do NOT want MS, but after 5 years of progressively getting more and more weird unexplained symptoms, MS is the first thing that I have found that fits everything like a glove. Its so frustrating to know SOMETHING is terribly wrong with me, and it is not getting treated at all.

At any rate, thank you so much for all the help before Christmas. Best of luck to all of you.

I agree with those that say to get a 2nd opinion. I do not have MS. But one of my dearest friends was recently diagnosed with MS. I *DO* however have tingling in hands and feet... other sensory symptoms. In my case it was caused by a reaction to a flu shot. It's a form of Guillain-Barre, which is actually sort of related to MS, in that they are both auto-immune diseases that attack nerves.

Have a doctor check your vitamins in your blood levels. In my case my iron and B12 were extremely low. And taking B12 orally wasn't bringing it up, so now I do B12 shots and iron pills. Starting the injections of B12 helped me to recover from my polynueropathy more quickly than anticipated.

I'm very picky about doctors. I want a doctor who can (and will) answer any questions I might have, and I always have a lot of questions because I'm a reader and researcher. I know better than to try to diagnose myself with conditions, but in several cases, asking about certain things - the B12 and iron for example - has led my doctor to things we might not have tried as soon....

Anyway. Best of luck to you. There are lots of new treatments for MS that can halt progression. There are even a few that can reverse the damage done according to my friend's neuro (he's the leading MS doctor in Texas - and at the same practice as my neuro).

 

[Bella the Ball 360]

I just found out I have white lesions on my brain from an MRI this week (that were not there in an MRI 5 years ago).... I have been having various other symptoms as well for some time (balance/dizziness issues, tingling/sensation loss in my hands and feet, weakness in my limbs and fatigue)...
My GP called me yesterday to say she is very concerned it is MS. I am absolutely freaking out. There are NO neurologists here who are planning on working until after the first of the year, and I am so scared and I dont know what is going on or what to expect. I am 28, I have a preschooler and a 2 year old, and I cant hardly look at them without worrying about the future and the unknown.
If anyone has dealt with this I could sure use some words of wisdom to get me through Christmas and New Years with this hanging over my head. Unfortunately, the only person I know of personally who dealt with this issue passed away before her girls graduated, and I am so scared.
Thanks everyone.

I did not read the all the posts so forgive me if this has been said. I have two people in my family with MS and they have had it for years and they really do not have all that much problem with it. That being said, are you taking any prescription meds? I thought I had it and it turned out to be a reaction to Lipitor. When I called my primary care he told me to see a neruologist. I first looked up the side effects of lipitor and lo and behold they mimic ms. So I stopped it for a month and the symptoms disappered completely. The doctor put me on Zocor and it was okay for a while but then once again the symptoms started. I stopped the Zocor and within a day the symptoms were gone 99% and completely within 48 hours. I am not saying that this is your problem but do not overlook this avenue.

 

[staci]

Thank you all for your comments!
I have actually heard of Guilllian Barre... that one thing I was really considering that I may have until I got the results of the MRI that had me look into MS, and then it explained stuff from past years... but the Guillian Barre I am still not totally ready to rule out. I did have a flu shot 5 days before the bad tingling in 3 of my limbs started - but i had had one episode of a tingling/numb foot about a week prior to my flu shot as well. One totally weird thing, that no one can give me reason for, is that the DAY I felt the first tingling was the day that I had my first allergy shot this past fall... but no one (my neuro, my gp, my ent) thinks that should have any direct correlation but i have stopped allergy shots for the time being.
My B12 and iron are good... I have had a bunch of bloodwork but thank you to the pp who suggested checking that.
I have tried to consider prescription meds; the only one I can think of that was from that time period was allegra and I cant find any correlation between that and these types of symptoms. That and I had an IUD put in a few weeks before this started - but again, cant find any correlation there.

Again, thank you so much to everyone for posting. I really really appreciate it. And talking about MS isnt near as scary when I see little disney characters and the castle and ads about vacation all over the page too; much less daunting than medical chat rooms!

Wishing you all a wonderful new year!