Anyone ALWAYS have at least some symptoms?

[mrs1885]

As I've been reading other posts and looking for answers, it seems that most people may have some bad days and then they're lucky enough for them to pass for a while. But does anyone have symptoms that are never totally gone? Hubby has a HUGE list of problems and some of them come and go, but others are always present. At least some amount of exhaustion and weakness, always a lot of pain, etc.

Maybe this is me still grasping at straws, hoping that maybe if his symptoms, their frequency and duration don't match up that perhaps that's why there is no diagnosis from the MRI. I've been reading these posts with hubby over my shoulder and he commented, so I thought I'd ask? At this point his life is lived in one single room of our house. On his oxygen, once in a while getting up to check email or Facebook to chat with friends. But it's gotten to the point that whatever is wrong has just robbed him of a quality of life.

[misslux]

Everyone is different, but I always have symptoms no matter what. These include fatigue (always present in varying degrees), neuropathic pain, tingling in both hands, hemiparesis, overall weakness...

I have "good" days where I don't feel so awful, but I never feel "good" if that made sense. This is my new normal.

I'm sorry that your husband is suffering.

[amyrising]

I always have nagging nerve pain, dizziness, fuzzy vision, brain fog, numb toes on my left foot and fatigue. Now that I have started Ritalin/ Hydrocodone and Gabapentin, the pain and fatigue is manageable and I feel a lot better. The other stuff in my new normal (or so I am told).

[venice]

I have symptoms almost all the time. Day to day they might be different, but it is getting increasingly difficult to remember what it felt like not to feel something "happening" to me.

I've not had my diagnosis long (a few months), though it's likely I had at least one flare, possibly more than, a few years ago, so I don't know what to expect. I have a hard time figuring out if a new or really horribly experience of an old symptom is part of a flare or just my new normal. It seems my neuro thinks that unless I become incapacitated functionally, the symptoms are just part of my new normal. Which sucks.

I still hold out (somewhat faint) hope that the symptoms are just part of one long flare, and they will dissipate, at least for a while.

[miwealia]

at least some, all the time

Some of my symptoms are unceasing, all the time - tingling (fingers and now toes too), balance messed up, tinnitus. But even though they're constant, the degree to which I experience them is not. Sometimes they're just on the edge of my consciousness; sometimes they're in my face, so strong I can't pay attention to hardly anything else.

[loopey]

I have symptoms all the time since June 2011. Some days are better than others but I always have bad balance, dizziness, and hot feet and tongue.

I have found that exercise like walking (a lot) do not make me feel worse. Stress, lack of sleep and heat are usually the things that cause really bad days. And then there are the days I wake up and just feel really sick for no other reason than a bad MS day.

I have come to appreciate the better days and try not to let my self panic on the bad ones. Sometimes I just don't know how not to be afraid. Afraid of progression, or that the Aubagio isn't working or all the other nasty things that could occur.

[JerryD]

I am Dx'd with PPMS and my symptoms are always with me. I have blurry vision, lack of hand co-ordination, lack of balance, etc... I don't have flares but my new normal simply aggravates me. This disease sucks.

[dyin_myelin]

Yes, but one thing I'm grateful for is that there's no pain. Discomfort, embarrassment, fatigue, weirdness, yes, but the kind of soul breaking pain you get with cramps, headaches, stomach aches never. And, imagine if you could feel those lesions! (I know some people get pain with this and I'm sorry )

[pyablon]

The Flip Side

On the flip side, I finally have my LP, blood, cytology and MRI results and the only positive is a single "specific" lesion. All tests are negative including Evokes. I do have a stiffness from lower back to knee but I also have numerous orthopedic problems and can lose my balance.

All my discomfort and pain are in my joints...back, hip and knee. And yet I have been diagnosed with PPMS. Something doesn't seem to add up. I'm confused, frustrated and concerned that my doctor is missing something. Anyone else with a single positive test result???

[wookieland]

My dr says some of the symptoms will always remain due to the "damage ". Like the l hermitttes I always have a slight buzzing when I bend my neck.

[hope32]

My first MS attack was 12 years ago and overall my disease has been relatively mild overall (though my first and third attacks were both pretty debilitating and i spent 10 days in a Taiwanese hospital trying to get the first one figured out).

I do have some chronic symptoms though: urinary urgency and frequency (I'm on meds for that but they don't control it as fully as I'd like); pins and needles on my left side that are easily triggered; visual-spatial issues that somewhat affect my driving. I deal with fatigue a lot though I never feel sure whether it's MS-related or not. And for a long time after my first attack (years) I had reduced strength in my right leg, about 70% strength compared to the left. That discrepancy has vanished though my right leg still has a tendency to "buckle" at times.

[Cat Mom]

Yes, much like the other Members who posted. The level of discomfort from those symptoms do vary but always there. Plus my left eye is permanently blind since 2005 due to repeated inflammation from back-to-back ON.

Jen

[tommylee]

Yes. 15 years ago it was more numbness and loss of body control.
It has been a long steady progression to constant pressure, stiff painful body, and other fun crap that ramps up and down but never leaves me.

I try to stay "up-beat" but sometimes I do feel cursed.
Sure there are many meds to "manage" my symptoms but most everything I have found either has some wicked side effects or puts me into a coma.

Yes I am a food Nazi and follow a strict diet. I keep fit and exercise regularly. My Dr.'s tell me I am in great shape, "keep up the good work"....
But I have felt like poop for more than a decade.

I never could have imagined feeling this bad and never getting better.
It is a strange trip learning how to just accept crappy as normal and trying to be ready for Extra Horrible Crappy at a moments notice.
It is strange to shift my goals to such simple things as continuing to be independent and take care of myself.

I try to be grateful but sometimes I do feel like MS has taken a Massive Sh!& on my life.
Sorry to be such a downer but if I sugar coated it I would feel like a liar.

[AlaskaAnn]

On the flip side, I finally have my LP, blood, cytology and MRI results and the only positive is a single "specific" lesion. All tests are negative including Evokes.
All my discomfort and pain are in my joints...back, hip and knee. And yet I have been diagnosed with PPMS. Something doesn't seem to add up. I'm confused, frustrated and concerned that my doctor is missing something. Anyone else with a single positive test result???

My last MRI (just read yesterday) shows a single ms lesion...however it has grown...from the MRI done years ago. Also my records state there were two lesions at that time. (They cannot find the actual film so have to rely on notes). My evokes were positive then and now.

[Jules A]

Yes, although I have been blessed to remain fairly active I have some constant MS symptoms.