Maybe MS... Either way it feels good to write this out

[KellyMGo]

They say the typical MS diagnosis takes quite some time, often years.  As for me, I'm waiting for December 16th to see a neurologist.  Not an MS specialist, but it's better than nothing.  I already have at least 4 diagnosed autoimmune diseases, so it wouldn't shock me.  Two weeks ago I had what I would call a first "noticeable attack".  I lost nearly all of my vision and could barely walk and had diminished cognitive abilities.  At the time, I was waiting for my Lyme test results to come back, but they were taking forever, so I went to the ER and said "Something is wrong with my brain.  Bacteria is either eating it, or my mylien sheaths are disappearing".  Ha ha, no, they didn't put me in the loony bin, although I'm fairly sure they thought at first I was on acid.  I asked for an MRI and the ER doc said, "You can't just walk into an emergency room and ask for an MRI".  And I replied, "Well, I'm not going home like THIS"... He called my PCP who said he was going to recommend an MRI anyways.  The MRI showed no lesions.  They dismissed me at the ER with vision problems exacerbated by anxiety, by coming off of Xanax.

(I was on Xanax for a year and 1/2-- way too long, basically.  I knew I was physically addicted and was very honest about how I was taking around 4 mg's per day.  And yes, I tapered down without any help.)

The only thing the MRI  showed was a cluster of abnormal veins, known as a Developmental Venous Anomaly in my left frontal lobe.   In any case... A week later, I had a follow up with my PCP, who clearly saw neurological problems (parathesias, difficulty walking and coming up with words).  He set up the December appointment, which can't come soon enough.  

In addition, a few years ago I had allergic reactions to who knows what and was on a steady dose of prednisone for quite awhile, so that *may* be why lesions didn't show up on the MRI scan.  I did not have a scan done on my spine.  I assume that's next.  

Two days ago I had awful pain in my lower back, to the point where I was limping and even bed rest wasn't working.  Tried to make an appointment with my PCP, but they didn't have any openings until days later.  I'm a single divorced mother of an active 7 year old, so that wasn't going to work for me.  They said go to the ER if the pain was bad enough,  It was, so I went.  They gave me some muscle relaxer called Soma, which I've never taken or heard of, and Vicodin.  They work, although they make me a little loopy, but at least I can function.  

It's just SO frustrating.  And it's odd and ends, here and there.  Two months ago, I fell twice.  Once at work and once down a few steps at home.  I just lost my balance both times.  I ended up being fired from my job and am collecting partial unemployment (to the tune of $81 a week) because I didn't tell my employer about my health issues.  I was denied full benefits due to that fact.  And now, I lie and say I'm able to work, just to get UC benefits. I'm broke, depressed, etc, etc.  I still have optic neuritis, and my vision is often blurry.  So much so that the world seems odd, and I feel detached from it.  

My family members don't emotionally support me and think I'm making everything up.  "It's something new every day with you, isn't it?" they say.  Ouch.  That's the worst part about it.  

I have every symptom of MS, except the bladder and bowel dysfunctions.  Unless you can consider on and off diarrhea and constipation symptoms.  Sometimes I pee if I cough, sneeze or have the (very infrequent, haha) orgasm.  I also have Grave's disease, hyperthyroidism, Vitiligo and had rheumatic fever two years ago.  I'm on a beta blocker (Toprol), an antithyroid med (Tapazole) and I just started taking Prozac about 6 weeks ago.  So far, so good.  

I'd love to just have a label. It may sound odd, but a label would at least give me relief.  

This is a part of my story, a little hello to the world out there!  I know people with MS have problems reading, so hopefully my introduction wasn't too long!  

[madiesmom]

Dont worry about everyone saying u r crazy, I just had a baby and all this stuff is happening and some family members had similar responses to me. The neuro I saw said it was anxiety, but I dont think anxiety makes ur mouth tired when u chew or makes ur fingers move involuntarily. So, my point is I know how u feel. This stuff is very depressing for anyone, although I am finding this community helps. I have already made some friends that I can really relate to. I can't believe ur employer fired u bc u did not tell them about ur condition. Isn't that descrimination? Anyway. I really hope u feel better and stay focused on ur son, he is the most important thing. I am here if u would like to talk or complain.

[slightlybroken]

Hi,

Welcome to the forum! I'm glad you found us. You'll find a lot of support here. I've been here for over 2 years now. I'm a limbolander (I'm not diagnosed). It sounds like you have a lot on your plate right now, as far as your health concerns. I hope you do find some answers in December.

I know what you mean about wanting a label, at least a name to what is going on with your body. I think it gives you a little of your power back if you know the name of your disease that you have. You can at least fight it with knowledge. The unknown is too scary to think of.

Anyways...welcome, and if you need anything, don't be afraid to ask. Check out the Health Pages (upper right corner, yellow icon) when you get the chance. It has a lot of great reading.

Take Care