new to this board...not diagnosed...questions

[elbasso]

Hi all! I don't really know where I really belong in this community just yet. My symptoms seem to 'fit' MS, but they probably fit a lot of other diseases also. My first flare was about 2 years ago when I had some right-sided arm weakness and facial weakness, and hand tremors, and i really can't remember what else, and my doc put me through a head MRI to look for MS lesions and some blood tests for antibodies for something and an EMG to test for muscle weakness for myasthenia gravis. all came out negative. After a couple of months, the symptoms went away, and I thought oh well, just a fluke.

Then, in June, I began having tingling in both feet that became so bad I could only stand being on a treadmill for 5 minutes. I became occasionally incontinent :( , my hair is falling out, and I was so tired that I was falling asleep at work so i went to see my doctor who tested my thyroid, glucose, and I don't remember what other normal blood tests. I went back to see him 2 weeks later, and, of course, all of those results were normal. I brought up the paresthesias and incontinence again, and he said to me that was the first I had ever mentioned it :eek: I, of course, corrected him, but he wasn't too happy...lol. He tells me to wait and see if it goes away. A few weeks later, the paresthesias traveledd to my hands, but i write it off as my job...I'm a transcrtiptionist, and I type a lot. But now, over the past few weeks, I have paresthesias constantly, and it feels more like the pins and needles. It includes my upper limbs, sometimes the trunk of my body, and now it has reached my throat, lips, and even my eyelids and the inside of my nose. And the incontinence is worse to...I had to leave work to change clothes one day, and I am just sad about this. Oh, and i have some hand tremors that just started yesterday too.

I don't have any muscle weakness, except for apparently the bladder. i have an aunt that has MS though.

I have a doctor's appointment on Wednesday, and I don't want him to blow me off. Does this sound like MS, or do you guys know of another board too that I could be posting on. Thank you so much, and sorry for the really long post.

[MS America]

Welcome!

You have come to a great forum. There aren't any actual neurologists here to help you, just people with MS. You may have MS, but your symptoms sound like they could be stress-related. Are you under stress? MS is actually far more rare than stress, which is why I bring it up. Statistically speaking, you probably don't have MS if a neuro has already told you that you don't have the disease.

You probably already know that MS is hard to diagnose, and we can't offer much more than some encouraging words here. In preparation for Wed, you might want to write down a few things you want to discuss, since the neuro will often leave you wanting more time.

I suggest you don't do much internet research yet, as it can be scary. I remember very well the need to find out what I had, so I can sympathize with you.

Hope you don't have MS!

Take care,

Cindy

[MS Bites]

Did you have an MRI of the spine? My brain MRI was clear, but my spine MRI had lesions.

Have you had a lumbar puncture? Evoked responses?

[terric]

Hi,

I don't think that you mentioned whether you have been to a neurologist. If not, and if I were in your shoes that would be my next stop.

terric

[elbasso]

thank you for your responses. I only had a brain MRI, because I only had upper body symptoms at the time. No lumbar puncture, and no evoked responses. Yes, I did see a neuro who "told" me what I felt and what I did not feel. I was not under stress at that point in time. This time, I am under some but not a lot more than normal. I am also bipolar, and I worry that docs won't take me seriously because of my mental illness. I really have been trying to avoid self diagnosing. They did note one lesion on the MRI on the brain they said was of no significance back then and I'm sure wasn't.

Angie

[MS Bites]

my recommendations, in no particular order:

Insist on MRIs of brain and spine.
Get a copy of your blood tests.
Buy additional long-term disability policy NOW.
Make sure you were tested for lyme disease, Vitamin B12 deficiency and other vitamin deficiencies.
If neuro will not acknowledge issues, fire him/her and find a good neuro who will listen to you.


Good luck.

[terric]

Hi Angie,

Interesting that you're bipolar. I am too. If we didn't have to say what meds we're on we would never have to tell any MD that we're bipolar. Most MDs do judge. I left my first neurologist because of that. my new neurologist has done a great job, and I don't feel judged. The first one said I wasn't sick enough to have M.S. even though my ver was not good and my first MRI had lesions consistent with M.S. The new guy says I do have M.S, but before he satarts me on meds he wants an L.P.) He did a second MRI with contrast).

Good luck finding a non-judgemental neurologist.

terric

terric

[semloh]

Just a note of welcome from another limbolander. I've had neurological symptoms since 1999. I had an MRI in 2001 that was negative, and a new MRI this morning. I will find out the results next Monday. It really is a bumpy ride, this diagnostic stuff.

You are in good company.

And ditto ditto on the bi-polar issue. Find a neurologist who will support you! I no longer see Dr. Neppe, but he was the only reason my seizures got diagnosed. No other doc would look past my history of depression. www.pni.org If you can afford him and you have access to him, he's truly a fabulous guy.

Kelseyanna

[elbasso]

Thank you for the encouragement. I am nervous about my appointment tomorrow. I am really hoping he takes me seriously.

I don't even know if I can get long-term disability with my already diagnosed bipolar disorder.

Lyme disease is one thing they did not test me for 2 years ago. They really only looked into MS and myasthenia gravis at that time.

Angie

[whchair]

When I was dxed, my bipolar disorder counted in my favor. I think the docs try to make anyone seeking a m.s. diagnosis think they're crazy anyway.

good luck--it is a long process.

Vince

[terric]

I tried to get disability for bipolar and at the time I really needed it. They turned me down because they said that I was making too much money; $10,ooo a year as opposed to $52,000 the year before. It had become very difficult for me to work. They said that if you make $10,000 or more a year...NO disability. I am trudging along. ( I had been hospitalized 3 times for the bipolar and was not trying to rip off the system.) I made $16,000 this year. I live in the USA. It's impossible to pay all my bills so I've been juggling them around. terric

[Cat Dancer]

I tried to get disability for bipolar and at the time I really needed it. They turned me down because they said that I was making too much money; $10,ooo a year as opposed to $52,000 the year before. It had become very difficult for me to work. They said that if you make $10,000 or more a year...NO disability. I am trudging along. ( I had been hospitalized 3 times for the bipolar and was not trying to rip off the system.) I made $16,000 this year. I live in the USA. It's impossible to pay all my bills so I've been juggling them around. terric


Terrific, were you trying to disability while continuing to work? It usually is only available to those who CANNOT work anymore because of their disability. Once you start getting SSDI you can make some money each month..I think the limit is somewhere around $700 (it may be more, now; it was $500 when I first applied), but when you first apply, y ou have to be unable to work entirely. So that's probably why you were turned down..because you were working, and continuing to work.

[lady_express_44]

I don't even know if I can get long-term disability with my already diagnosed bipolar disorder.


The rules (at least in Canada) were that you can be denied benefits for some pre-existing conditions, but even if they denied disability coverage for bi-polar, that wouldn't necessarily exclude you from coverage for other conditions.

There are differences though, between "employee/group" coverage and "personal/private" coverage (ie. if you try to take it out yourself, not through your employer). For both types, you have to declare any prior health problems/testing, but for group insurance, usually you will still be permitted coverage for non-dx conditions, so long as you do not have any problems with it for X months (or years) after the policy is taken out.

I think private insurance is more exclusive, and they can deny coverage for pretty much any reason. :rolleyes: Some companies are more fair then others too though.

I really just wanted to say that even though they might deny coverage for any future bi-polar episodes that could take you out of the workforce on disability, that doesn't necessarily mean they will for other conditions. It's worth looking into, and/or getting advise on this.

(I was denied for Ulcerative Colitis, since I had it before insurance . . . but was still covered for LTD when the MS was confirmed...)

Cherie

[MS Bites]

In US there is no upper limit on how much you made the previous year or previous to becoming disabled to get SSDI. I am a little confused. I think you have to be unable to work five months before you qualify. You must also have 40 quarters of SS Income to qualify for SSDI.

[MS Bites]

Terrific, were you trying to disability while continuing to work? It usually is only available to those who CANNOT work anymore because of their disability. Once you start getting SSDI you can make some money each month..I think the limit is somewhere around $700 (it may be more, now; it was $500 when I first applied), but when you first apply, y ou have to be unable to work entirely. So that's probably why you were turned down..because you were working, and continuing to work.


Sorry I should have read this first. Ditto on what Cat said.

[Abby2006]

http://img152.**********.us/img152/7311/welcome2df3.gif

Abby

[MomtoM]

Ditto what Cat and MS Bites said. Although, I applied 4 weeks after I permanently left work, in March, and received my first check in May, another 4 weeks. That is because I had to go out for 4 weeks the previous October and then they counted my attempts to go back to work while missing days here and there till February as a "failed attempt" to work.
If you made 10,000 as opposed to 52,000 as a result of trying and failing to work, maybe if you documented that there would be a better result?

Deb

[cricket52]

Hi Elbasso and welcome!

You mentioned you were dx'd as bi-polar as did several others of you.

My first visit to the MS neuro she asked me if I had been dx'd as bipolar. I actually hung my head, mostly because everything had been blamed on depression, mental health issues yada yada yada.

She told me to look at her and gently and kindly said something I will never ever forget. She told me that bi-polar illness is a symptom of MS.

Sometimes people come into your life at just the right time. For me being treated with respect and such kindness changed my outlook on my mental health issues.

Best of luck to you. Keep us posted.

[elbasso]

Hi Elbasso and welcome!

You mentioned you were dx'd as bi-polar as did several others of you.

My first visit to the MS neuro she asked me if I had been dx'd as bipolar. I actually hung my head, mostly because everything had been blamed on depression, mental health issues yada yada yada.

She told me to look at her and gently and kindly said something I will never ever forget. She told me that bi-polar illness is a symptom of MS.

Sometimes people come into your life at just the right time. For me being treated with respect and such kindness changed my outlook on my mental health issues.

Best of luck to you. Keep us posted.

Thanks. My doctor actually told me yesterday that because of my mental status, my symptoms might just be a thought process...just exactly what I was afraid he would say.


Thanks to all of you. I had a MUCH better visit today with my psych, though. Please check out my new thread below. I'm so happy I have her for a doctor.

Angie