Relapse again?!?! Virtigo... Seriously??

[Cann1980]

I am really frustrated!

I am pretty sure I am in the middle of another relapse or the beginning of... Ugh. :(

It started the same as the last 2 ... Very tired (more than usual) then my IBS kicks in high gear... Then my bladder joins the party with pain (sometimes feels like a contraction) nd frequency... Then I sit and wait for what is to come next... I was a little dizzy last week... Now today I can't walk one step heel to toe without wobbling... Eyes closed is even worst  ... For normal walking I seem ok to me, just not heel to toe. I can't shake my head yes or no ... I feel nauseous looking up and down. Slight dbl vision in right eye
I am not to a point that I would intervene but I think it is another relapse which bothers me....
April 2013 optic neuritis
Sept 2013 numbness /fatigue/hug?
Now?? Already? Seriously?

I am so done .. I want to be normal!  I wish I was not in this club!

Is it normal to have this many in a row?
Can this be stress if it is a new symptom?
I have had slight virtigo before ..  But not like this.
Do flare ups usually begin the same way each time? It seems mine have a common start... Not that I am complaining bc I am beginning to understand myself again.

Anyway thanks to all for listening and always being my sounding board! I don't know what I would do without the support of this group!
Thanks!

[cubbiesfan918]

Yikes, sorry you are going thru so much lately. Keeping my fingers crossed for a better appointment in January. I hope you get some relief asap!

[Cann1980]

Update:
Went to neuro Monday
Let them know all this stuff going on... He did not even do any neuro tests.. He just believed me and that was that. Wow.. That was a surprise.
I am going for a new MRI in January to see changes due to all my constant symptoms and flare to see if this is changing anything inside my noggin.
Ms nurse said I should call her if anything gets worst... She knows I was not on board for steroids unless things get bad.

He switched my amantadine to alertec or modavil .. Tried this today and it really seemed to help. The amantadine was not working.

Also bumped my rebif to the higher dose, eek... Not looking forward to this.

[Cann1980]

Alex... It is relly always a mystery ... Never an answer of what the cause could be.. It is hard to accept this sometimes. :( but carry on we will.
I should not complain really with my sight issues only bothering me this year. I could not imagine learning to drive with dbl vision.

[Cann1980]

Thank you! We need to catch up :)

[Cann1980]

Thank you so much for all your kind thoughts and information.. I will for sure look into these, :)

[mjfalend]

Greetings,

I just found this site while looking for something else.  I have had RRMS for 40+ years - before there was such a thing as DMD or MRIs.  Attitude is EVERYTHING!  Don't let it get to you and exercise as much as you can (within limits).  There is almost nothing you can do to improve upon the MS fatigue except exercise, but it has to be within the limits of your daily energy store.  We all know that you only get so much energy within a day, and how quickly you expend it determines how you can spend the rest of the day.  Look at it as a cliff, you can walk up to the edge of the cliff, but don't go over. If I ever "go over" - did too much that day, I can be down for 3 days.  Not a good way to use your vacation days.  

It is just as a few others have pointed out, MS is different for everyone and not everything works for everyone.  But I do know that there is truth to the  saying 'Use it or lose'.  I have lost my eyesight completely 9 times over the last 40+ years.  Steroids used to work for me.  They don't work for me anymore now that I am SPMS.  That's OK.  I found Neuroplasticity and it is really making a difference for me. I fixed my eyesight without drugs.  I have to keep doing the exercises off and on for almost a year before my brain 'remembered' what I wanted.  It has been three years now and it doesn't forget anymore.

Put in a Google search for Neuroplasticity and MS  and you will find a bunch of great links.  Here are some of my favorites:

http://lifeneurologycenter.com/about-fnc/
http://www.positscience.com/
http://www.normandoidge.com/normandoidge/
http://chiropracticneurologist.org/
http://www.sharpbrains.com/

Neuroscience is being used to treat all kinds of diseases and impairments TBI, Stroke, MS, Cerebral Palsy, - even OCD!

http://www.hope4ocd.com/schwartz.php

If you are not feeling well, then always call your doctor.  There is too much medicine out there to put up with feeling poorly.  Always remember -  they call it 'practicing medicine' for a reason.  No one, even most doctors, has all the answers.  

You have to find your own answers sometimes - but you do have control over your attitude.  Don't let it get to you.  Talking with others that have this disease helps, but it really is up to you to take matters into you own hands.   I wish you all the best and pray that soon they will come up with a fix for this disease.  In the meantime, never stop moving, no matter how slowly, and never stop looking for alternatives.  I am on a mission to be the oldest living person with MS that is still walking!

All the best!  Marge

[cubbiesfan918]

Sorry to hear about your troubles, vertigo is for the birds. I am thinking of you and your family and sending good vibes way up north!

XOXO
Lizzie

[HVAC]

The vision could cause the vertigo or it could be the same set of nerves causing the vertigo and the vision. For me it relates to the damage in my brain stem. I use to work construction and climb three story ladders with vertigo and double vision. That was before I knew I had MS. I even learned to drive with double vision. I am lucky because I have never known any different since mine has been this way since I was an infant. Getting used to it as adult is harder.

Alex

[Cann1980]

Alex I am hopeful the rebif will work but too soon to tell I guess. :/ thank you for your wealth of information. :)

GG... I am hoping my vertigo is as far as this one goes... I am still ok with how it is now and I am scared of more steroids... Fingers crossed I have hit the worst part.

So I noticed last night that my double vision get worst when I tilt my head to the right .... Then I did it and took a selfie... Omg... My eye is turning up when my head tilts but only to one side... Google has brought me to learn that it is probably damage to a nerve behind my eye making my muscle lazy... Now I am wondering if this is causing the vertigo???

I am glad to be going to neuro on Monday.

[Guitar_grrrl]

I had two flares, 5 years apart, that started with vertigo, followed by trigeminal neuralgia.  Most of my flares early on were burning patches on my right arm and leg.

The thing is, every flare can be different, even in the same person. Weird as it sounds, I'm kind of interested to see what's next in myself.  :-P

I hope you feel better soon, and that the Rebif kicks in sooner!

[HVAC]

There are two things going on with MS inflammation and nerve damage. Most people have problems with inflammation. This is where relapses come in. First off it is important to find the right DMD for you. If you are on one more than six months to year and are having lots of relapses it may be time to try another one. Stress adds to inflammation but its hard to get away from stress. Some people try low inflammatory diets but for some people that does not work. Some people can do light exercise for stress others can't because of their MS. Some people try meditation and again for some it does not work. Steroids work for some people to relieve inflammation and for some people they do not work. This disease works differently in everyone. What I have done is by trial and error with my Neurologist and my PCP found what works for me.

Some people try things and it works some people try everything and the disease just progresses and nothing works. Most people are somewhere in the middle. It is important to have a good Neurologist and or PCP and to let them know every time you think you have a relapse.

There is no one size fits all treatment for MS. I for example have a kind of MS the DMDs and steroids do not work for.

I am stuck with symptom relief. My pain clinic and PCP have been working for years to get the right combination of medications for symptom relief. They are always tweaking it. Its a work in progress.

Alex

[Cann1980]

Thanks corrie!!! That makes me feel better that you are in the same boat with so many relapses... Sadly .. Sorry :/

I have a regular scheduled appt with neuro on Monday so I am just going to talk to them then... I will not be taking steroids again unless it is very very much needed and this i can handle so far. :) just off and very annoying.... But do able :)

[Cann1980]

Ren
Thanks for reply! Yes I am barely into my rebif .. About 3 months now.
I just find it frustrating lately. Thanks or listening / reading!!

I am glad to be figuring some things out and understanding myself is quite powerful!! I know this was one thing that bothered me very bad in the beginning and it is a little better now :)

[Corriel]

Oh sweetie, what a teribble couple of months you are having!

I recently had some mild vertigo and it lasted 2 weeks, that was new for me and I am still not sure it was MS related.  Shortly before that I had a new spasticity issue in both arms and it took weeks to get better. It was a little over a month after my last relapse so I think it may have been another flare which would give me 4 relapses in 12 months.

Ren is right about Rebif still needing time to work, I know mine is still just under 6 months in my system.

You should see what your MS nurse has to say to be on the safe side.

I am sorry you are having such a tough time.

Hugs,
Corrie

[rendean]

Hi! Sorry to hear of another relapse starting!! Vertigo is the worst! I had it for 3 months straight at one point.

As for a another relapse so close, you haven't been on Rebif that long, just short of six months? Sometimes it takes a whie for your DMD to take command and slow down the relapses.

My relapses do have several common things occur when they start. Mainly old symptoms that have quelled down raise their ugly heads again, like my nystamus and my TN starts acting up.

As you said , you are learning your body and know when things are sliding downhill. That ,to me, was a good thing to learn.

We're always here for questions, vents and support!  If things get tto bad, call your neuro for advice!

Hugs,
Ren