My Whole Story - Diagnosed April 4th with MS

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My Whole Story - Diagnosed April 4th with MS

Postby luke082988 » Thu May 09, 2013 9:31 pm

Hey I'm Luke. I'm 24 years old and was officially diagnosed with Relapsing Remitting MS on April 4th 2013. Sorry if my story is long, but I wanted to tell it and see if I can get some help.

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?
Last edited by luke082988 on Fri May 10, 2013 8:39 am, edited 1 time in total.
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Re: My Whole Story - Diagnosed April 4th with MS

Postby euphoniaa » Fri May 10, 2013 3:56 am

luke082988 wrote:Hey I'm Luke. I'm 24 years old and was officially diagnosed with Relapsing Remitting MS on April 4th 2013. Sorry if my story is long, but I wanted to tell it and see if I can get some help.

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?


Hello Luke, and welcome! Since my vision is not very good -- like many others here -- I went ahead and broke up your post into smaller sections so we can all read it more easily. Large blocks of type are impossible for my eyes & brain to handle. Actually MY eye issues are not from MS -- my eyes are just old, so I wear tri-focals. :smile:

I don't have time for a long response because I'm headed in to work soon, but I will suggest that you take a deep breath, browse the forum, make yourself at home and read on all the topics, and you may find some helpful hints while you're waiting for responses. I'm one who has also been through a year of medical crises (not MS related), but I'm still hanging in there, MS and all, still working full-time after 40 years of MS. I was diagnosed at age 52, but I've likely had MS since age 22.

You might also want to start more threads with individual topics in the heading, and those with expertise will stop in to answer them. Hope you find plenty of answers and relief here!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: My Whole Story - Diagnosed April 4th with MS

Postby lyndacarol » Fri May 10, 2013 5:39 pm

Welcome to ThisIsMS, luke. This is a large, supportive community of many individuals who have our unique ideas about MS. We are happy to share our experiences and answer any specific questions you have.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: My Whole Story - Diagnosed April 4th with MS

Postby aredmosquito » Fri May 10, 2013 8:16 pm

I have to keep this short (left hand is numb so typing is hard), but welcome! I am 25, was dx'd 3/16 with RRMS after a month's battle with vertigo, nausea, vomiting, and problems walking. I also take Rebif.

As for your medical situation, I am underinsured and have racked up $90K in costs so far this year! US healthcare sucks...
Symptoms as far back as 2007
Diagnosed with RRMS March 2013
Started Rebif May 2013
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