What else could it be?

[empirerecs]

Hi Joanne -
I've been moving so haven't been on in a while. You are very positive in your outlook when you said this has been a good learning experience for you and your children.

When I was first dx I didn't really think much of it - I couldn't stop it so I just looked at it as another part of life. I'm a medical junkie - I love to learn about new things, treatments, medications, cures - all things, just not MS so this was just something new to research except I now had a true subject - me! It has been interesting to 'see' how things with my body and brain have changed. I can't say good, but interesting.

The brain is powerful, misunderstood and hard to fix.

Stay positive and I hope you have figured out the costs and trying to get healthcare.

[jjs]

Well ... I guess I just needed a break from all this MS stuff

I had the MRI which came back inconclusive. There were some white spots but the doctor said they could have been because I had a rough lifestyle when I was younger. He ran a whole bunch of tests ... every blood test he could think of ... and everything came back good. This confirmed his thoughts that it's MS. I also talked to another doctor, told him all that was going on, the test results, etc. and he too thinks it's MS. There is a charity based neurologist that the one wants me to go to, but I am going to leave it be. Since 3 doctors now think it's MS and I am not planning to take drugs anyway, what's the point in pursuing further medical help? We'll see what the future holds.

The 3rd doctor I talked with agreed that he would not take the drugs either and the 2nd doctor did not think I was crazy.

Thank you all for your help and encouragement. I'll be hanging around here when I have time.

[Allene]

I'm new here -first post-

I saw this thread and it intrigued me. Have you looked into dysautonomia? I mostly skimmed the thread, so I'm not entirely sure it hasn't been mentioned. It's a disorder of the autonomic nervous system. The symptoms overlap a great deal with MS. Unfortunately from what I understand, MS is probably the better diagnosis. There aren't really any treatments for dysautonomia, it's a huge pain to get disability (the disorder can be incapacitating), and it's something hardly anyone has ever heard of. Ever. I've never met anyone who didn't have it (and wasn't a doctor) that knew what it was. In fact, I've only had one doctor (out of many) that seemed to know what it was.

I was diagnosed with it about a year ago, but I've had the symptoms since 2008. I actually came here because my symptoms aren't quite as consistent with dysautonomia, and I was curious about MS.

Go check it out just in case?

[hope32]

I'm sorry you weren't able to get a clear answer but you seem to have a positive outlook on everything. I hope your symptoms clear up.

I learned a lot from this thread about the B12 deficiency. I thought I was having a relapse but the radiologist's report says no active lesions on my brain or spine; I will have to ask my dr about testing for B12 deficiency.

[Shiela]

jjs, there is a free program called cute pdf freeware that will allow you to save web pages in the form of pdf files to your computer to read them later.

I had decided not to take meds either if I was dxd with MS. Since then I've done a lot of reading and found that there is now research to show that it slows it down. At least for now, I've changed my mind and have decided to go ahead. I have brain atrophy and the doc says it will slow it down. Sorry I can't remember where the research was, but you can sign up for Google alerts for "MS research" and it will come to your e-mail inbox. I have found some interesting articles that way.

[ShakespeareMama]

May I ask what your sxs were?

I just had to pipe up as you stated Lyme disease didn't fit...

However, Lyme and MS have VERY similar sxs.

It took the doctors a couple years before my Lyme was detected in blood work. I am still under investigation, though, as MS is still on the table...

But I'm just curious as to why it was ruled out based on sxs.

*hugs and sunshine!*

[jjs]

Why was Lyme's Disease ruled out? I guess because the test came back negative ... but maybe we'll have them check it again in a year or so if things are still going all crazy like they've been. I have not had a rash that resembles the Lyme's rash (haven't had a rash in so many years I cannot even remember the last time; maybe when I was a child?). I also do not have flu symptoms like chills, shakes, headaches, etc. but do have the aching sometimes and the fatigue.

Symptoms (came on at various times over the last 5 or 6 months??):
- numb, tingly, sensation in my feet (tickles more than tingles)
- went blind in my right eye for several hours one time but sight in general has been much more poor
- extremely tired at times for no reason at all (normally a VERY active person ... but that's been impossible recently)
- have had muscle fatigue a few times as well ... this comes with lots of pain my muscles but joints seem fine.
- difficulty concentrating. memory has been very terrible. sometimes I even have a hard time spelling.
- sometimes it's hard to coordinate my fingers to type or do other smaller jobs like using a knife, writing, etc. fingers trip over themselves and do not grip right.
- sometimes my feet drag. I try so hard to walk properly but it does not work. once for several days in a row I was in serious need of a cane ... hobbled around, ran into walls, nearly fell a few times, etc. legs were so weak like the muscles didn't work right. 'spaghetti legs' to the extreme those few days, but have had 'spaghetti legs' to a less extreme most days out of the last 4 months.
- sometimes I cannot talk right ... either because I am just missing the words or because my tongue feels like it's going numb and seems 'thick' or large that it does not fit in my mouth and makes words hard to pronounce. sometimes I stutter.
- most days i have burning spots on various places in my body. some days it's nearly all over but some days in in a few different areas. sometimes it's on my face - especially my lower jaw and around my eyes.

Well ... there might be more things but that's what I remembered real quick. Does this sound like Lyme's?