Feeling so Discouraged

[zerodegrees]

Hi All,
It's been a while since I have been on here.

Quick history:  Diagnosed with MS almost 2 years ago. Been on Tecfidera for over a year. I'm having such a bout with fatigue that I just want to go to bed and not wake up. EVER. I feel a ton worse now then I did when I was diagnosed ( which happened quickly at an ER visit and then confirmed 3 weeks later).

I am not depressed, never have been and have always had a positive attitude about my disease.  I do not feel sad, I am simply....T.I.R.E.D!!!!!

I had a brain MRI and lab work and everything is unchanged. While I am happy to hear this, I wonder how I can feel so crappy yet not be in a relapse. Every symptom I've ever gotten has NEVER left, I mean seriously never.

Is this really all there is in my life?  Going through each day staggering around like a drunk, stiff, uncoordinated, blurry vision, feeling confused, and not  being able to keep my eyes open? Elderly people pass me by when I am walking. WTH???

I am taking Ritalin for my fatigue and it was helping for a few weeks, but now I don't know why I even take it. On Christmas Day I hosted a dinner for friends. I rested as much as I could throughout the day.  I curled my hair, which is just past my shoulders - it didn't take long to do, but I had to take a nap after that before I could start cooking. Really? Who needs a nap after curling their hair?

Is this really my new norm. I guess I don't really have a question, just needed to tell someone who understands.

Thanks for listening.

[Corriel]

Good for you!

It is hard trying to decide if you should see another specialist or not.

Keep us posted,

Corrie

[zerodegrees]

Thanks guys for the replies. Today, I decided to switch doctors. I am going to go to a neurologist that specializes in MS.  I had to do a lot of digging to find one that is in my network, but I finally did.

I will continue to worry about my future for the next 2.5 years because I have two kids that rely on me for everything. After they both graduate from high school, then I will only need to worry about me and that will be easier.  

[HVAC]

One thing I will never forget working as a veterinary assistant. When a dog lost a leg you would cover the run with blankets. When the dog woke up he would try to get up and fall. He would keep trying for hours. It would take awhile but he would finally find his balance with out the leg. You would give him encouragement and the tail would be wagging. You could tell he was sore from the surgery but that did not stop him. In a few days it was as if he was always three legged.

When I was diagnosed with both MS and cancer I went through the guilt since I could no longer work and had higher medical bills. I wanted to be the way I was before cancer. With Cancer the guilt was worse. I can do less and the bills are higher. I feel down right lazy sometimes. I will also die young and there is nothing I can do about it. I will cause great hurt to my husband and I hate that the most.I wish I were like the dogs who have no emotions tied to their conditions. They just know they have to do things differently. Most days I take that lesson to heart and am happy. I am different from Alex of 2007.

I might question the Tecfidera. I am on a chemo that is keeping the cancer stable. The other chemos decreased it so I am asking for something to push it back. I am not happy with just stalemate. Stalemate is good but not good enough.

Alex

[kwarendorf]

I agree 100% with everything immie just said!

I also think that it's vital that we "get over ourselves". By this I mean that life as we new it pre MS is no longer an option. We are now faced with life with MS. It s*cks but it is. I believe in not wasting time or energy thinking about what was or worrying about a future which, in the big picture, we cannot control.

Kyle

[immisceo]

I think you need a pep-talk in self-advocacy. Your life is being negatively impacted. There may be options to feel better. Demand to know about them. Demand they be discussed. Ritalin not cutting it anymore? Tell them. Ask for other options. Unsure if Tecfidera is working? Demand a c-spine MRI.

A lot of us have to get over the fear or aversion to being 'that patient' over the course of our MS career. Why are you not worth getting some relief? Why do you have to resign yourself to how you currently feel when you might not have to? Why do you have to go without answers when there may be answers out there?

We all know how mentally draining all of the above can be. We really do. But you have to ask yourself "are the professionals assisting me in living at my physical best in the context of my disease"? If not, they get the pink slip. Be ruthless. You ARE worth it.

[zerodegrees]

Well, I don't know why I didn't think of this before!  It came to me while responding on another thread.

In addition to my brain lesions, I also have a few lesions in my spinal cord (cervical and thoracic).  Last week when I saw my neuro for increased symptoms (and some new ones) he only scanned my brain.  No change.

I feel really stupid now, but no longer feel like I am crazy!  I wonder why he only scanned my head?  Last time my symptoms flared I had a scheduled appt coming up 2 weeks later, so I just told him at that appt. I went for brain and spine scans a couple days before that appt as part of my regular follow up. My old C2 lesion enhanced with the contrast. So he said I had a relapse and progression. I did not treat with steroids and the symptoms did get better (but not totally gone) and that was over a year ago.

I don't want to go ask for a spine scan. What's the point?  It's not bad enough to need treatment at this point. We already know that the disease is going to progress. Do we really need an expensive picture to prove it?

I wonder why he is only focusing on my head though. He actually told me in the past that my cervical spine lesion is what probably gives me the most trouble because he said it can disrupt from that point in the neck down; therefore causing symptoms anywhere from the neck down.

[zerodegrees]

My neuro tells me my MS is stable too.  Really?  Is that why I feel like a pile of crap. ha ha

They don't know why my symptoms are acting up but they can tell me the disease has not progressed, whatever that means. I am feeling better today though.  

Although I am fairly newly diagnosed, I have had symptoms for a long time;  symptoms that I ignored and never sought help for.  I think I have had it for a lat least 10 years would be my guess.  

At diagnosis I had "a lot of lesions" in my brain and a "few" in my spinal cord.  He would not tell me how many and when I asked him how long did he think I had it, he said there is no way to know.

I wish we could just know what our future holds with MS. I sometimes worry about that, especially now that I am divorced.

Today, I was walking to lunch with my work team through downtown (1 mile each way) and a couple of them kept teasing me about how I could not keep up with them. I just laughed and blamed it on my short legs (which they are) and they are all taller than me.  

Honestly, a part of me wanted to cry. I thought for a minute of telling them, but I want to prove my competency in this job first as I've only been there about 2.5 months. Also, they are sweet, young girls and I knew they would be mortified for teasing me if they found out why I can't walk fast.  We all work in  healthcare so......enough said.

Also, I remember when I used to be like that too. Unfortunately I was one of those people that didn't see a disability out in the community unless it was blatantly obvious. Sad considering my own mother was in a wheelchair since I was a kid (MS) and I am a nurse!

I definitely respond to people's movement in public very differently now and I don't make comments because you just never know their situation!

[Corriel]

Hi there, like you I am taking Tec and have been on it a year and a half. I have had one major flare during that time and a lot of new symptoms that seem permanent and some slightly progressive during that time.

Despite all of that, I have no new lesions. My neuro considers me stable and to me stable means no progression be it on MRI or with new or progressing symptoms so I disagree.

I am now waiting for a referral to an MS specialist to see what he thinks.

On a side note, the weather where I live is only starting to get really cold but my fatigue has been crazy for almost 4 months.

I agree that you and your neuro should consider switching meds and see if your ongoing symptoms can be treated.

Good luck and keep us posted,
Corrie

[immisceo]

"I feel a ton worse now then I did when I was diagnosed" tells me it's not working sufficiently. Typically, the first year after diagnosis (in the cases of relatively quick, early diagnoses) is kind of a crazy one, but things tend to settle down a bit after that. But I say this while still acknowledging MS doesn't always play by the "rules".

MRIs aren't able to image every relapse, but even that's beside the point. Your daily life is being negatively impacted by something that's almost certainly related to your MS, be it a full-on relapse or a debilitating symptom. It sounds like time for bigger guns (be it DMDs or symptomatic medications) and you deserve a doctor who's on board with that.

[zerodegrees]

I had mono as a kid. I do not "feel sick" especially like I have that, since I remember how it felt.

I was actually starting to wonder if I am having cold intolerance. Is that a "thing?"

I believe the Tec is working and that is why I am not having any new lesions. But for some reason, my symptoms are acting up.  

[immisceo]

Your neurologist should be discussing another treatment. Tec doesn't sound like it's working sufficiently for you.

[gjjl]

Just a quick question....have you been tested for ebstein barr?

[idcharlie]

Slept in till noon , then took 2 naps on Christmas day. I remember days where speaking was more than I could handle. Not sure how long it lasted, several months. But when I felt better I had more compassion for others going through difficulty's.