freaking out

[Phoenix822]

I'm in limbo. Waiting, waiting, waiting.

My grandmother had MS and I watched what it did to her. Now at age 42, I have had symptoms and warning signs for almost 20 years. Early on, when I first started experiencing occurrences, I went to my PCP to discuss my fears. He sort of yelled at me. Without any tests, without any examination at all, he shouted that I absolutely do NOT have MS and that I should quit wasting his time. So for the better part of two decades I have attributed my symptomatic days to poor sleep, my fluctuating weight, poor lifestyle choices, and (more recently) old age. I've been afraid to bring it up with any doctor. And in the many days I've enjoyed between occurrences, it's been easy to convince myself that it is all in my head.

My mother has also had symptoms all this time and every now and then we compare notes and discuss our fears. At the end of each discussion, we reminded one another that the chances of either of us having MS is small, and that we are just crazy for even worrying. It turns out that for almost 20 years, she and I have both withheld a lot from those conversations. So many of our symptoms really *could* be attributed to so many other things, or - in fact - actually all in our heads. For fear of seeming legitimately crazy, I held back. And so many symptoms are just too embarrassing to discuss at all (incontinence comes to mind).

I have clung to the hope that I'm a head case without any physical malfunction at all. The fact that I made it to 30 without a diagnosis made me feel like I was "in the clear." If I had MS, surely I'd have been diagnosed by then. Right? It turns out, doctors can't diagnose what they don't know about or test you for. And I have made a focused effort to avoid doctors at all costs. I haven't had any broken bones, and just about everything else a person might have falls into one of two categories:
1. It's common and easy, and best treated by rest and fluids. The doc will pat you on the head and send you home.
2. It's not common. It's not easily diagnosed. The doc will pat you on the head and send you home, telling you that it's probably within category #1.

So what's the point?

But now...

My mother was recently diagnosed with MS. I hadn't realized how much I clung to the fact that we were both diagnosis-free. If she could be diagnosed at 60+ years old, I guess I'm not as "in the clear" as I might have thought I was. I finally summoned the courage to talk to a PCP about it, and I successfully argued my way into a neuro consult. The neurologist I spoke with was truly wonderful, a very patient and professional and kind man. Blood tests have begun and I'll be scheduled for imaging soon. I know that it is quite likely I will not get a diagnosis of MS. Just because I share symptoms with my MS-diagnosed mother and grandmother does not mean that the same thing is affecting me. This could be so many things. Old age. Poor nutrition. Psychosomatic. So many things. But until I know I will continue to worry.

In the mean time, there is NO ONE to talk to about this. My friends aren't the sort who'd get this kind of thing. I can't discuss with work-friends, because I don't want this getting back to my bosses. I can't worry my brothers or my daughter with this; even if (especially if) I am diagnosed I can't tell them this. My grandmother passed long ago, and probably wasn't "there" enough by the end to have been someone I could talk to in any case. I've shared some of my concern with my boyfriend, but how much can I expect him to really listen to?? And as for mum... talking to her seems inappropriate. She has a lot on her mind, what with her recent diagnosis and all. Besides, it feels insensitive to discuss with her because if (if, if, IF) I do have MS I could get diagnosed and start treatment so much sooner than she did.

I feel overwhelmed and extraordinarily isolated.

[KitOP]

Welcome to MSWorld - a place in this universe where our goal is to end the isolation for people with MS, and those going through the process as well.

I'm very glad that you got to see a neuro. This is a big first step. The bloodwork will rule out other things that share symptoms with MS. The MRI is very important. Be sure that they do it with and without contrast.

Diagnosing and treating MS is very different than when your Grandmother had it. The doctors know so much more about it now.

I truly hope that by the time all is said and done that you do not have MS. I would not wish this upon anyone.

Please keep posting. Ask questions, or just vent. Or on the other hand you have something good to share, we want to hear from you. You have found a home here. We all get it and we want to help.

Hugs

[hunterd]

welcome to MSWorld PHOENIX! It is so good to have you. Please try not to worry too much about what MIGHT be and focus instead on the future. You mentioned now you do not want to talk with your mom now that she has been diagnosed. a mother does not quit being a mother just because of a diagnosis. I often tell people that you do not just MS until you get MS. Best of luck to you

[Phoenix822]

You mentioned now you do not want to talk with your mom now that she has been diagnosed.

Just to be clear, we talk. Lots. I just don't feel super comfortable talking to her about my limbo and stuff. I mean, we used to talk symptoms but it was different when we both just thought we were just whinging. Now, for me, it feels like she's legit and I'm (still) merely a paranoid whiner.

In (un?)related news, my kid is in college. She calls me all the time and we chat. Sometimes she calls when I've had a very, VERY bad day. And sometimes when she calls on a very bad day, I'd like to be able to say "So glad to hear your voice. My day was just awful and you've made it better." But I can't, because she never pauses for breath in telling me about all the drama in HER life. As a mom, I can't discourage her. She needs to talk and at her age there isn't much I can do to ease her troubles but listen. So I get that. I know that if I needed to call my mom she'd do the same. She'd listen. But I know how it feels to be on the mom side of that conversation and I don't want to do it to her, especially right now.

Also: THANK YOU for making me feel welcome here. Truly. It makes my heart happy.

[sparkles9708]

Your PCP sounded like my original neuro only he said "Well the only other test I can run is a spinal tap and that would look for infection and you don't look infectious now do you?" Needless to say after that my PCP and I decided it was time for a second opinion after I fell and tore my medial meniscus. Now its just too bad it is taking two months to get a brain MRI. I am lucky that a lot of my friends are either in the medical field or have had actually someone they knew afflicted with MS so they are okay for the most part talking about this. However, hunterd gives good advice, your mom doesn't just stop being your mother ever.

Keep on living your life until you know something, although my primary is pretty much convinced, no one else seems to be overly concerned and so I am trying not to be at this point. When or if I end up diagnosed and I hope I am not, I will deal with it then. I also loved my new neuro and her NP, but this whole taking two months to schedule an MRI thing is absolutely ridiculous and frustrates me beyond reason. While I appreciate her offering to read the MRI the same day and even doing the LP the same day if it warrants it, I still plan on saying something about this wait because lets face it, this waiting period is nerve wracking. Good luck to you and I hope you get answers soon.

[Phoenix822]

Thank you, Sparkles. I hope you get your answers soon, too!

[Phoenix822]

So far so good. My blood tests showed very little. My vitamin D level is a little on the low side - not actually deficient, but something to keep an eye on. I've started adding vitamin D supplements to my daily routine just in case.
And something else was a little above normal range. I wish I could say what it was. What my neuro was saying on the phone all made sense to me at the time but within seconds of hanging up I lost it. *sigh* He took his time explaining it in plain terms and all. But then... It was just gone. Like someone had wiped a whiteboard before I had time to capture what was written on it. I really, really hate it when my brain loses stuff like this.
Although I don't recall what it was I do remember that "normal" would be < 1, and my level was 1.1. He said it's probably nothing to worry about and wants to see my MRI before deciding what we should do next.

MRI is tomorrow. Follow up appt with Dr. T is on Thursday.


In other news, my brothers now know I have an MRI coming up. My mom outed me. I (still) don't want them to worry about me and I also don't want to look like an idiot when it turns out to be nothing. So I downplayed a lot. I glossed over the issues I've been having and how bad they've become over the last few years. I said that I just want to rule out MS, just in case. That's sorta true. I mean, I do know this could all be in my head. Especially in the many days between flare ups it's easy to believe I've imagined a problem where none exists. Now they think I'm wasting money I don't have on tests I don't need. But I didn't know what else to do! I felt like letting them think I'm a nutter was preferable to getting into details on symptoms that are elusive, tough to explain, and - in some cases - horribly embarrassing.

In the end, answering their questions made me feel more isolated rather than less.

[Phoenix822]

the news is... good?

i had my MRI today. The neurologist called me two hours later to give me the results, rather than making me wait till my follow up. He said that he does not feel the MRI showed MS. My initial reaction was joy and intense relief. After a couple hours of processing, that's turned into something like despair. WHAT IS WRONG WITH ME?

He doesn't want to put me through any further tests at this time. So... That's that. Most days I feel perfectly fine but some days I feel like I'm one big manufacturing defect. I never know when those days will hit, how bad they'll be, or how long they'll last. Over the years it has beaten me down and made it harder and harder to enjoy the good days.

I'm glad to hear that I don't have MS. Truly. I mean, I'm not an idiot. I wouldn't wish MS on myself or anyone else. But if I had a name for whatever this is, then I might have treatment options. There might be something I could do. As is, I'm just... I don't know what I am. Maybe this is what "healthy" feels like.

[lucidmom]

Ask for a copy of the results and the radiologist report. Despite his reassurance that you're fine, you might feel better seeing your MRI. You don't know what you are looking at, but if there is anything there it will be circled on the pictures. Plus reading the "impression" of the radiologists words will explain what he saw. Then you can also take the disc any where if you decide to get a second opinion.

[Phoenix822]

I've been thinking about this a lot.

After having a really good heart to heart with my mom today, I cried a lot, I listened a little, and I feel peaceful.

The mri ordered for me did not include contast or flare. In short, it's exactly the same as the MRI my mom got just before being told for the umpteenth time that she does not have ms. That MRI was just a week or two before an mri with appropriate ms protocols, which showed (surprise) ms.

Shes encouraging me to keep fighting. To not give up until I have a diagnosis of SOMETHING. If it's not ms, then it has to be... Something. Or several somethings.

And as she struggles to cope with facing wheelchairs in her near future, she tells me to gather up what minuscule resources I have, hoard them, and keep fighting!

I am not young. But losing my mind, losing confidence in my legs, losing control of my bowels and bladder... 42 is far too young to be 80.

[msgijo]

After having a really good heart to heart with my mom today, I cried a lot, I listened a little, and I feel peaceful.
Shes encouraging me to keep fighting. To not give up until I have a diagnosis of SOMETHING. If it's not ms, then it has to be... Something. Or several somethings.
And as she struggles to cope with facing wheelchairs in her near future, she tells me to gather up what minuscule resources I have, hoard them, and keep fighting!

That is great that you two are talking about this. You will be valuable resources for each other.

I am not young. But losing my mind, losing confidence in my legs, losing control of my bowels and bladder... 42 is far too young to be 80.

I can identify with you here . And you cant even get the senior discounts yet!

Still hoping that it is not MS, but wishing you luck in finding out what is wrong.

[Kali]

Shes encouraging me to keep fighting. To not give up until I have a diagnosis of SOMETHING. If it's not ms, then it has to be... Something. Or several somethings.

Yes, yes, yes!! you need answers. So keep fighting. Glad you can talk to you mum about this.

I am not young. But losing my mind, losing confidence in my legs, losing control of my bowels and bladder... 42 is far too young to be 80.

Tell me about it. 41 here, and feel so old somedays