Worried about my new diagnosis

[falneth]

I was very recently diagnosed with Multiple Sclerosis. In fact, it was this past April when I was diagnosed. I am 25 years old and the neurologist said she could not venture a guess as to how long I have had it. She said that the MRIs of my brain show several old lesions throughout my entire brain but none in my spine. However, the lumbar puncture results also showed proof of the MS diagnosis. My mother and grandmother agreed that I have complained of various symptoms of MS for at least 2-3 years but they always put the symptoms down to something else and never even considered that MS might be the cause.

I decided to see the neurologist on my own because my primary care doctor refused to give me a referral. I was having verticle double vision, could not walk due to massive imbalance issues, and was getting sick anytime I rolled over or tried to sit up. I had been to the emergency room at least twice in the first week of April for these symptoms. Well, when I was at my first appointment with the neurologist, she advised me to admit myself into the hospital so that we could get the issue diagnosed and immediately begin treatment, depending on what the test results were. When the MRIs came back showing MS, she immediately started me on IV steroids. I do not remember the name of them so please do not ask. I received a single bag every day for 5 days. At the end of the 5 days of steroids, she had me released from the hospital even though I was still unable to see without having a patch over one eye. She told me that my vision would eventually stabilize and return to normal but she had no idea when it would happen. Also, she told me that she was surprised I was functioning as well as I was due to the amount of lesions in my brain. However, she went on to say that she has other patients whose entire brain is nearly one large lesion and who are fully functional.

When she discharged me, she set me up to take Rebif 3 times/week. I am currently getting the medication from MS Lifelines. When I informed her about my aversion to needles, she told me that "there are oral medications for MS out there but she did not trust them due to them not being on the market for more than 2 years." She told me that in regards to injections, the Rebif was the best (in her mind) she could give me.

I have done a little reading about the Rebif and know that it can cause depression. I mentioned my concern about this side effect to my neurologist because of my past issues with depression. When I was a child, I was diagnosed with Bipolar Disorder and was once hospitalized because I had suicidal thoughts (as a teenager).

in July, I took a leave of absence from work so I could get the issues I was having with my Rebif straightened out (flu-like symptoms) because they were causing me to miss work or leave work early. In order to return to work, I had to be released by my doctor because I took a leave of absence for medical reasons. Well, my neurologist released me to return to work in August but with a major limitation: I was not to lift over 10 lbs. This limitation caused me to lost my position as a cashier at Sam's Club, where I worked, and be forced to accept the position of door greeter (it was the only position that my limitations let me fill). Most recently, I have been having issues at work which I have discussed today with my doctor's nurse today and she apparently called my doctor after hours and informed her of my concerns. So I will be going in to get another MRI tomorrow.

One of my major questions is this: Does MS have the capacity to change a person's personality? I asked my mother recently how I have changed over the years and she told me that as a child, I was a happy child and was hardly ever angry. She said that now, as an adult, I am always angry. I completely agree with the statement about the way I am now but I have no clue about when I was young. I have almost no memories of anything from when I was young. I know I have issues dealing with my wife and my kids because I am always so angry or irritable.

I have been seeing a counselor for the past year who I have a very good relationship with and who I have worked several things out with but I feel that there is at least one major cause to my anger that lies buried in my lost past. My counselor was unwilling to help try to dig out the answers for me when I asked her to.

I am constantly worried about what will happen to me next and how will I be able to support my family. My wife attends college part time and is home the remainder of the time. She does not work at all right now. I am the sole provider for my family and I feel that I am unable to provide for them and that we must rely on my family for support.

Another question I have is this: My counselor has told me that I am not wired for relationships (I assume that is due to my father's physical abuse of me as a child) but I crave physical intimacy. I crave it so much that I am obsessed with sex. Could this craving possibly be related to the MS?

[supermum_ms]

Hi and another welcome from me,

I'm inclined to be leaning towards your childhood abuse history and dx bipolar having the stronger connection to personality changes, relationship and sexual addiction issues, than your dx of MS.  

Like others have mentioned, i'm confused by some of the comments your neurologist has made, and i'm stumped at why your neurologist isn't at least helping you get disability! She is the one putting such an extreme weight restriction and effectively limiting your employment options, so it doesn't make sense that she's doing nothing to help.

I think it might be a very good idea to get a second opinion, preferably with a neurologist who specialises in MS, your only 25 years old and it boggles my mind the opinion your getting from your current neuro.

Cheers...........JJ

[Guitar_grrrl]

Hi, there, and Welcome!

I was diagnosed 4 1/2 years ago, after 25+ years of symptoms.  I'm 55, a grandmother, and I'm still working (I've always been the "breadwinner"), cycling, whitewater kayaking, hiking, and practicing Yoga.  Yes, I walk with a stick, and my gait is getting goofier by the day, but I'm still being my "fun hog" self.  Please don't let your diagnosis get in the way of living.

If my diagnosis changed my personality, it was more for the positive: I've been granted this day, it's been a good day, and I'm still here, married, and employed.  One Day at a Time!  I live for this one day, and worrying about the future is futile.  None of us has the power to see the future, and trying to see the future is trying to take control of something that's impossible to control.

I wish you peace.

[falneth]

I went to see my neurologist today to follow up on the MRIs I had yesterday. She said that nothing has changed since the last time I had an MRI. So that is good news.

When I asked her about removing or even changing the weight restriction she placed on me because it severely limits any work I do, she refused. Her statement was, "I will not alter the restriction because there is no knowing when the next exacerbation will happen. It is not a good idea for you to be lifting heavy objects when you are having issues balancing on your own." So, because I am having issues with brain fog and dizziness, she does not trust me to be able to lift anything over 15 lbs. I can understand her concern but it really limits what I do, work or otherwise.

[falneth]

This is actually my 3rd time being denied.

[HVAC]

Most people get denied SSI the first and second time. I am going through the process myself. I know it is not easy they want you to give up. It is not fair.

Alex

[kwarendorf]

If your counselor is not able to help you discover the real cause(s) of your anger it might be more productive to find one who can.

"I have been living my life as if I did not have the diagnosis."

This is good and bad. Suppressing this fact isn't really healthy mentally. Physically I understand the "Not going to let this slow me down" approach. However you'll likely find situations where your mind is willing but your flesh is weak :-) It's OK to accept these situations. It's important to respect the information you body is giving you.

Kyle

[falneth]

Jifr:
I may have misspoke when I said my counselor  was unwilling to help dig out the hidden issues dealing with my anger. What I meant was that she helps me work through any current issues I have but because I have such an issue with remembering things from my past, she is unable to pull the causes out. I think that the answers, or causes, lie in my subconscious because I cannot remember them on my own. My counselor does not believe in using hypnosis to help in counseling so I don't know what else to do in order to expose the issues.

My neurologist is the one who put the weight restriction on me. I was having issues keeping up at work which is why she put the limit on me. I had a neuropysch eval just October of last year. I live in southwest Missouri.

HVAC:
I applied for disability and for Missouri Healthnet (Medicaid) per my doctor's recommendation when I was in the hospital. I even had a representative to help me with both. However, I was denied both and my representative withdrew as my representative because he felt that there was almost no chance I would qualify for disability. In fact, the reason he withdrew was because he, and social security, felt that although I am not able to return to the work I was previously doing, I am capable of performing less physical and/or psychological demanding work. I actually received a letter from social security stating that my denial appeal was denied for that exact reason even though I had not had a hearing yet and that I did not qualify for SSI or SSD.

kwarendorf:
Solumedrol does sound familiar. I do believe that was it. This particular therapist is the first I have formed such a bond with. In fact, I do try to talk to her about any type of issue I might be having and she has no problem discussing any topics with me. As for me being angry about having MS, I know for a fact I am angry about it. However, I also know that I have been an angry person for far longer than I have been diagnosed with MS.

As for me dealing with my new reality, I know it is stupid but I have been living my life as if I did not have the diagnosis. I really should be making changes but I honestly have no clue what to change or how to do so. I am so deeply ingrained in my way of life that I do not know if I am even able to break out of it.

[kwarendorf]

Hi Falneth - Welcome to our little group.

Your first paragraph sounds very similar to my story. I chased individual symptoms for 20 years before MS connected all the dots :-)

What you received in the the hospital was likely IV Solumedrol (IVSM). This is high dose steroids, whose purpose is to reduce the inflammation of a current relapse. Once the inflammation is reduced most symptoms resolve, however some take longer than others. It's also possible that some symptoms might not ever fully retreat.

As your doctor said, there is no real way to predict how MS will effect you. We each have our own, unique version of MS. I have lesions in my brain, c-spine and t-spine but to see me you would never guess I had MS. Getting started on the right disease modifying drug (DMD) is important. At 2-3 years from your first symptom you are still pretty early in the game. I wasn't diagnosed until 20 years after my first relapse and I'm doing fine!

I'm not sure if MS itself can cause psychological/psychiatric issues, but processing the fact that you have MS sure can. I was really angry and I didn;t know why. I didn't think I was too bad, but others around me did.  I thought I was dealing with my new reality well, others didn't think so.

Counseling has been another important part of addressing  my MS. I spent a year seeing a therapist once a week. We worked through all manor if issues from my past and present. When we went through "all" of them I was still angry. Turns out that I was really angry about having MS. I just hadn't let myself think so :-) If you are seeing a therapist that is putting limits on what you can talk about you need to find another therapist! I would urge you to find someone with whom you feel comfortable discussing ANYTHING!

I can't help with Rebif, as I went right to Tysabri. About your physical limitations, your body should be your guide. There are likely to be things that you could do with ease yesterday, with which you will struggle tomorrow. This is the hard truth about MS. We just don;t know from day to day. That said I try and do as much as I can. I am in better shape following my diagnosis than I had been in the 20 years leading up to it. I eat well. Our bodies are at war with MS and I think every little thing I can do to help it is important.

Kyle

[HVAC]

This is very complicated. MS can cause emotional problems and mental ones. People with MS can also have other illnesses like Bipolar. If you have childhood issues working with a counselor is a good thing. It may take a long time to work out your problems. I have been in counseling for years. I can't speak to the MS and wanting sex since I have never had that problem. It could be possible. Whatever is causing your difficultly with relationships in the end you will still have to work at it. I feel when you have illnesses you have to work harder to get along with people for the simple reason you need them and do not want to drive them away.

You can always look into disability if you can't provide for your family that is what it is for.

I am sorry the Rebif is causing you problems. I did Copaxone because I did not want the side effects of the Rebif. The only issues is you inject daily.

Alex

[Jifr]

Hmmm... Soooooo many things sound not entirely right in what you posted above so I feel like there are probably pertinent details missing?  I was really distracted by the 10 lb lifting limit restriction you received.  

Did you receive that restriction from your neurologist?  Did they say why they were giving you a lifting limit?    That is so curious to me.  Usually, when I've seen that, it's when doctors give restrictions for work for a workers compensation concern??  Something doesn't feel right about that.

You may want to ask your doctor about a referral for neuropsych eval and also seek treatment with an MS psychologist or psychiatrist.

I see red flags all over the place in your statement about a counselor being unwilling to help with anger issues.  Did he/she really tell you no?  Maybe I am misunderstanding?

What part of the country are you in?