I thought I would post my entire MS story here. 24 years old, DXed April 4th 2013.

I've been through a lot in the last 2 years - fathers death, divorce, plus 2 surgeries - all within a year and a half. Things had gotten better by October 2012, and was good until late December 2012/early Jan 2013. I was really depressed, and decided to go my primary care doctor to see if he could help. After telling him everything, he had suggested I had Type 2 Bipolar Disorder. He prescribed me Topamax 25mg for it. A week later, I was hurting really bad, couldn't sleep - so I go back to him. He prescribed Klonopin .5mg. And it worked, I was able to sleep at a decent hour and things were fine up until another week later. I was driving on a Thursday in early Feb and experienced double vision - I wear glasses and never in my life have I ever experienced this, and it was really frightening, but I made it home, and decided to go back to my doctor, just after a week of seeing him. He tells me when I go that I need to see an eye specialist - so I go, they look me over, do all sorts of tests, and find nothing. However, they suggested that I should see a neurologist as soon as possible.

This was on a Monday, and I saw the Neuro on Wednesday. He had mentioned MS being a possibility, but in order to be sure, we needed to do some tests, which the first was an MRI. Fast forward to the results, it showed up a one solid white lesion on the right back part of my brain. My neuro told me he didn't expect to see this at all. So he ordered another brain MRI, this time with contrast to see if the lesion had any reaction to it. Plus, I did blood work. Fast forward to the results, the 2nd MRI didn't show the lesion acting toward the contrast that was given, and the blood work was fine. So, he said then we needed to wait 6 months, and to come back and to do another MRI to see if the spot on my brain moves or if there are more spots etc...The second set of results were told to me by phone call. I was upset at this news, so I went back to my primary care doctor, and he suggested that I come off completely of Topamax and Klonopin to see if this works. He said I would know if it works within a week. It didn't work. I still had double/blurred vision, and my sleep schedule became unstable again. Since I had double vision still, my doctor told me to stop driving, which I already had stopped due to issues beforehand. But this time when he told me I really had to stop driving, it meant that I had to turn in my vehicle. So I did. At this point after this doctor visit, I had headaches every single day, couldn't sleep at night hardly, and when I did go to sleep, I ended up sleeping till lunch. I would take Tylenol or Advil, but nothing helped. All through this time through the end of March was a huge waiting period, I was hurting, and finally was told I was going to be admitted into the hospital in which they would do some tests and to be prepared to stay a while. I was actually glad to hear that because I wanted something to be done rather than wait.

So on April 4th, I went to neurologist, and he said the test they were going to do was a spinal tap, but he told me that he had enough evidence to diagnosed me with Relapsing-Remitting MS. So I was stressed out that no more tests at that time were to be run, and now is the time to wait. He prescribed me on Rebif. I started out on 8.8 for 2 weeks, then 22mcg for 2 weeks, and today--Friday--will be going to 44mcg on Rebif dose. I started Rebif on 4-12, and on 4-15 my midsection felt like someone was squeezing it tightly, was painful but tolerable. By 4-17, it hurt so bad that I had my mom take me to the emergency room, which all they did was give me a shot and some narcotics. My mother called my neuro, and didn't get a response until 4-19. He said to stay off Rebif for a couple weeks to see if got better. Well we were not happy with that answer. I called my primary care doctor AND MS Lifelines, and got the same answer - that the pain was probably an MS Hug, and not a side effect of Rebif. By 4-26, the pain in my midsection had subsided, and is no longer there. The next days after 4-26 can be described as I was more depressed than normal, and I still am to be honest. I've had problems with depression all my life, and the last 2 years its just one thing after another. I feel alone mostly, because I have been homebound since Feb. I can't go anywhere unless someone takes me. I live with my grandmother. I have food stamps at least, but was denied medicaid, in which they and my doctors told me to file for disability. So I did. No answer yet from them, in which they said it would take 4 months to get an answer but the lady I talked to on the phone told me a date - August 10th so I don't know if that means an answer or what.

I also asked my primary doctor if I could go back on Topamax and Klonopin, and he said yes. So I've been on them now again for three weeks. The problem is that I believe Topamax has never worked in the first place, and Klonopin doesn't seem to help me sleep anymore. I usually take two .5mg Klonopin before bedtime, but they do not work anymore for me. I go back this Monday - May 13th to see my primary care doctor for a check-up, and will ask to be put on something different possibly. The last phone call I had with my neuro, I asked him some questions - 1 - Why were my muscles tense all the time & 2 - why is my speech slow and slurred? His answer was he doesn't know, and doesn't see a link between those symptoms and MS. After my own research, I've seen how they are tied into MS. When I say my muscles are tense, I am saying that it's like they are always constricted, especially my forearms and my back primarily. And that has been like that for over 10 years that I know of. Secondly, when I say my speech has been slow and slurred, I have always been fast talking and what not, but my speech has dramatically reduced to where it's hard to pronounce my words sometimes, it is slower for me to have a conversation, and it sounds like my speech is slurred. It also takes me longer to concentrate on things that I would normally just ace right through. Occasionnally, not always, I stumble, and cannot walk properly. I've also noticed after taking the Rebif shots, that it makes my symptoms worse instead of better. My last shot in fact made me feel the worse achy feeling in a long time on 5-8. Also, my back is humped in the middle, and it hurts in that spot a lot, and through research I've read that MS causes weakness to make it slump? With that said, I also have weak knees, and tight hamstrings.

Other symptoms that I have is fatigue - I've always complained about being tired all the time, no matter if I've done anything or not, and I still am that way. After the research I've done, I wonder if I've had MS for a very long time, yet why did double vision just come out of the blue all of a sudden, and it is still going on? Even with Rebif, I feel that ever since the double vision started in Feb, my symptoms have been getting worse, and or more frequent. My next neuro appointment is July 2nd, in which he told me that then is when they will do the next MRI to see what the spot has done. One note I have about this, is through research, the spots looks kind of grey or faded white into the brain...my white spot was a pure white spot, and wasn't just a faded in thing. Is this normal for a lesion? Also, even if he does the MRI and finds more activity lesion-wise, what is there to do next after that?

I don't have health insurance, and no income. I was fortunate to have my first 2 MRIs paid for, but in July, I might not have the funds for 3rd one so I am unsure what to do about this and all of this stuff to be honest. There is just a lot of stuff that has went down in the last four months, yet the doctors want to wait it out. I don't have the funds for a second opinion, and I don't even know if I should need one. I really just don't know what to do at this point, except to wait, but I wish there was more to do. What do you suggest?

With my vision issues I have due to MS I can't read large locks of text like this.

I'm assuming there are others who have a hard time with it as well.

If you could space out your paragraphs it would help many of us be able to read your posts.

I'd like to read it but just can't.

Constant, tight muscles can be chronic spasticity from MS, or maybe fibromyalgia. I have both. I was on zanaflex for the spasticity, since the pain can bring me to tears. But my heart was doing funny things on it, so I'm now on baclofen and clonopin.

Don't give up...and get a hold of your local chapter of the national MS society and see if they can help you with financial aid.

There are also special prism glasses that can lessen double vision-at least I hve read that. Others here might be able to give you more info on that.

Doesn't sound like your neuro is being a good team member. My neuro believes that you need to feel that your questions and concerns are fully answered.

That said, MS takes a long time to figure out...and to be honest in this day and age if you don't have the financial means to pay for treatment, some docs will not see you.

Is there an MS center in a university hospital nearby that can give you free treatment?

Also, it is VERY difficult to get SSDI. I got rejected the first time-they usually reject a good majority of applicants in hopes that you'll give up. My second try got me on it.

Keep us up to date...and make sure to keep a symptom journal with dates of onset and diminishment of symptoms, as well as a question sheet for your next doc visit.

And last-you're not alone-this is a great community with info and experience, as well as support. Try to reach out to find support networks. The worst thing about MS is feeling alone and depressed. And MS also contributes to depression. Don't let that take over.

Hugs, dear...

I've been trying to reach out, but then they tell me to reach out. So it gets frustrating when you try, and are just pushed off to someone else. I come here looking for answers while waiting. I spent over an hour writing this one post, because I wanted to deliver my entire story, and try to remember everything that I could in one post, rather than separating it out, and plus people can read the entire story. I am depressed, and just want answers rather than waiting and being pushed off.

In all honesty Luke, people are trying to help you everywhere you have posted, but you seem to brush off whatever they say...so it gets frustrating for those trying to reply as well!

Please remember this community is made up of primarily patients, not healthcare professionals, all going through varied health problems. The people replying to you are mainly doing so from their own experience and trying to share what helps.

MS (and any other illness) varies greatly from one person to the next, so no one can have finite answers specific to you! They can only share what has helped them or their loved ones.

And being asked to "space it out" was not asking you to make lots of posts, but rather to write short paragraphs with spaces in between as especially here on the MS forum, many have vision problems.

Since you are not working and don't have an income, I strongly suggest you get on some sort of state aid program (Medicaid). You will certainly qualify and that will help pay for your next MRI as well as follow up visits and any other testing that may need to be done. It will also help reduce your stress level some as you won't have to worry about the financial side of having a chronic illness.

Waiting for a dx is tough. I was lucky in that it took 3 years for me to get diagnosed. Others it takes years for a dx of MS or any other disease. Sometimes the answers are not quick and waiting is what has to be done. Unfortunately, this is real life and not a medical drama TV show where answers are given right away. I know of a man who was terribly disabled from some neurological disease. He spent most of his adult life with the disease and passed away at 65 never knowing what the disease was. He went to so many drs and specialists throughout the country and no one could figure it out. This does happen. The key is to find treatment for the symptoms while waiting for a dx.

Talk to you PCP about switching to another AD since the topamax doesn't seem to be working for you. I tried 2 other ADs to help with pain management and finally found one that works the best for me. Additionally, there are other meds you can take for the spasticity. I tried baclofen and Valium with no success, they were too strong for me. Ativan was the right med for me and has worked well. It's a trial and error with medications and what works for one may not work for another. For this, you have to work with your PCP on coming up with the right combination of medications that will work for you.

I'm not a dr. and I don't know your medical history. And trust me, even if I was a dr. I would never in a million years dx someone over the internet and I would hope you wouldn't want a dr to dx you over the internet. With that said, I can only give suggestions based on my experiences and what I have learned in my MS journey.