When is this going to stop?

[shel67]

I felt good (I use the term loosely) Friday and by  Saturday I began to go downhill again. Every time I feel good, maybe even this rollercoaster will settle down for a little while and I feel I might even be able to make it, I feel bad again. Symptoms will even feel "better" in some way. I'm less imbalanced, clearer head, I feel like I want to move instinctively and feel like body wants to be normal.  But by late afternoon and when I woke up this morning,  I feel like I'm getting worse again. I'm so afraid more is happening to me subtly. Now my eyes are scraring me. Off and on blurriness.

Is this the way this goes? Isn't there a leveling off at some point?

[doublevision1]

I get it. I had a REALLY hard time with my diagnosis while coping with some of the worst symptoms I've had in my entire eight years with this disease. Couldn't drive, barely left the house, was so tearful and emotional, didn't want anyone to know. I think I was in a prolonged state of shock. I have no history of mental health issues either. I just had a really hard time. I don't know why some of us take it harder than others. I'd been through many of the ups and downs in life that most people go through, and I'd always been very resilient. But being diagnosed with MS just shattered me, for many months. I wasn't interested in counselling or meds. Eventually I adjusted, it just sunk in and I got used to the idea of having it. The only thing that really got me over it was time.

BTW those early, awful symptoms did subside. I think I told you I had double vision for about a year. I've never had a recurrence as bad as it was back then. It's too soon to know if your symptoms are permanent. I know it's easy to dwell on, that's pretty much all I did back then. I remember reading one of my neurology reports in which my neuro stated that I had "very active" early MS but that often once patients are on treatment they stabilize and disease activity settles down. I was certain I would not be so lucky. Fortunately I was wrong. Once I was on treatment I went from three relapses in a year to one every three years on average. You are right, no one can say for sure we'll be okay, all we can do is take advantage of the treatments available to us and make sure to take care of our overall health. Overall our chance of doing well is so much better than generations before us. I shudder to think of being diagnosed pre-DMDs.

As for why bad things happen? In the wise words of Dr. Gregory House, "People don't get what they deserve. They get what they get."  Best not to overthink it, because there is no good answer to that question.

[shel67]

Thanks JJ... I need this to be understood by everyone, I have never had any history of having any mental heath/ anxiety/ panic/ depression issues, ever. Not even in the last 5 years of having this disease did I have these issues. I had the wired head/ weird eyes last year but it wasnt like this and it went away. I was left with dizziness or imblance issues that were not too bad.

This is the first time I ever had these issues and thought of as having mental heath issuess. I simply had none of these issues. I believe its situational, due to the shock of the diagnosis, mainly that the disease morphed over night literally. Went from mild symptoms with full to pretty close to full recoveries to permanent damage that may never heal.  Dealing with this is hard. I can't find a silver lining, I can't see a light at the end of this tunnel. I can't envision myself living with the head symptoms. As aggravating as the physical symptoms are, if my head felt clear and my eyes would quite being weird i think i would be okay. That is what gets to me. Not being able to go to the store and by grocries with out feeling overwhelmed and like I have ADD on steroids. I don't know if its  anxiety/depression or brain issues caused by the disease. And I certainty don't know how to fix it.

I'm sad for a number of reasons, that I can't do anything I want to with my kids right now, that I feel I never had a chance with this disease to slow it down before it got this bad. Had I had heath anxiety I would not have blown off all those mild early symptoms, believing it was stress, menopause. I know I need to get over what I can't change but it will take time. I just wish I knew how.

Its that this disease isn't predictable, not even the treatment can be predictable. Its that no one can truly reassure me that its going to be okay. No one knows. I know I need to be positive and strong and live one day at a time but I just don't know how to do that.

I also have guilt that I feel so sorry for myself when I know we all have this disease. I know I'm not special and this ***** for us all. I just wish I understood why bad things happen, none of us deserve this. But I don't have mental heath issues. I'm just sad that this has happened to me and to everyone else.

[supermum_ms]

BREATH!

You are currently dealing with high levels of anxiety and experiencing panic attacks, MS brain lesions can directly effect emotional responses depending on lesion location or indirectly cause depression, general or health anxiety etc with the more disabling of symptoms, in the newly diagnosed and or be an additional pre-existing medical condition.........please do not make the mistake of dismissing the worsening effects an anxious mind has on the physical issues caused by MS!  

It's understandable if you're more sensitive to conversations about anxiety and mental health because of your past experiences but it is in your best interest to put aside your past and focus on your 'current' mental health situation. Anxiety even when experienced by pwMS will cause their thoughts to hyper focus onto their MS symptoms, how much attention is given to symptoms, fear and anxiousness can make anything appear to be worse than it truly is, because anxiety creates the fearful thoughts and negative emotional responses.

There is a lot of misconceptions regarding all the different mental health conditions and misunderstanding on how they differ in there effect on an individual. It isn't as uncommon as people think, for a person newly diagnosed with MS to additionally experience 'health anxiety', experiencing an extremely rapid decline, symptom development without corroborating clinical evidence of abnormality etc, the developmental pattern and missing diagnostic evidence more consistent with their health anxiety than their organic condition.  

Collectively we have a lot of personal and or professional experience, some of us truly understand how even an MSer with non disabling symptoms can rapidly become disabled by their fears and anxieties focus..........please seriously consider being proactive about your mental health, with your current levels of anxiety and panic attacks, I truly believe it is in your best interest to be brave and seek medical assistance for this specific medical issue to help you in the short and long term!

Hugs........JJ  

[essdipity]

I don't understand why you are not seeking relief from your symptoms as you await another neuro appointment. General practitioners/family doctors can prescribe a number of meds that can help.

You post many times a day, which in itself is fine, but to me indicates you are fixating on MS to an extreme degree. My advice is to detach, to the extent you can. Get immediate help for symptoms, await your next MS intervention, but meanwhile live your life.

Many here, including me, have dealt with this, and we know about MS and its issues. You are not unique in this, but you may be making things worse by your intense focus. Lots of us have severe symptoms, and lots of us also do not have significant mental health problems. We do research medications, and are generally aware of life with MS. There are thousands of posts that demonstrate what I'm saying. We know how to put things in perspective, and we know that trying to control every aspect of MS is not only unwise, but is futile. Things do tend to work out, believe me.

ess

[Corriel]

Atta girl, one thing at a time. Since MS varies so much from person to person it is key to just listen to your body and not try to understand every symptom unless it becomes a longterm symptom. A lot of symptoms are transient and just occur sporadically.

Take it one day at a time as opposed to worrying about down the road. How you react today will help you in the long run.

I have learned that not every new symptom means a progression which took me a while to understand. I have almost a dozen new longterm symptoms in the 2 years since I was diagnosed but my MRIs remain the same, no new lesions.

C.

[HVAC]

Understand that the MS drugs do nothing for symptoms. Most of the time you do not noticing anything different.

Alex