Some real questions abt real relapses

[saveone]

MS is pretty new to me.  All tho when I look back I realize it has been around a long time.  I don't have an official dx of "probable MS", demylenating disease, and progressive memory loss.  Sound familiar?  Since July I have been paying close attention to my symptoms.  I have been tested, poked and prodded as much as anyone could be.  I say they have to give me a dx soon because they have nowhere else to look.  Back on topic.  In July I was dx with severe anemia of an unknown origin and my MRI showed plaques around the horns of the front lateral ventricles and around the right peduncle all indicative of MS.  Ovoid in shape, etc.  Some symptoms went away as my iron levels increased, i.e. rapid heartbeat, angina, total fatigue (now it comes and goes). Some symptoms continued to increase, loss of balance, brain fog, falling, and a whole host of others.  Then about two weeks ago I started feeling better.  It was like I woke up and it was there.  Now after 2 weeks, I awoke this morning with my symptoms worse than ever esp the brain fog.  I let my 13 yr old dog out in 33 degree weather and forgot him until it was time to feed him.  I don't even remember letting him out.  I usually set a timer so I won't forget him.  I just closed the door and left. (Can you tell I feel really bad about this?)  I put a skillet on the stove, I was going to fry an egg for bkft.  I turned on the burner and walked off and left it.  It has been like this all day.  I have had to be really careful.  I also told honey a moment ago I would be grateful if I could make it through the night without falling.

Since MS came into my life I have read everything I can get my hands on.  I am a person who has to know good or bad so I can deal with it.  The online info on relapsing doesn't really tell me a lot ( however the one Heather wrote for the Health pages was good) about ppl  experiencing relapses.  I am not even sure this is what is happening to me but I have more than enough of the symptoms she listed.   I wonder, can a relapse come on that quick?  What is the longest relapse members here have experienced, etc.

So I would like to have input from the forum family.  I sure would appreciate it.  Sorry this is so long.  I'll blame it on the brain fog.  Thanks a head of time. Looking back I think I have rattled on .  Sorry to out of it to fix it.

[Wobbly]

well, this is something you have to be VERY Carefull with, please see your Dr about your memory...OK.. it sounds like a dangerous situation.

When do you see the Dr and have you had a LP yet?  or are you going to have one?  

this is the first time I heard of low Iron being apart of this...do they have any idea why your were low on Iron?  

sorry, I have lots of questions...
do you have other symptoms...?  when did they give you this dxs?

take care
wobbly
undx

[saveone]

Thanks Wobbly for your concern.  My neuro is aware of the problem with my memory.  How much he cares I am not sure.  I have had an MRI, ordered in early August by my GP.  I don't know the strength of the machine.  The MRI was ordered because I was experiencing headaches and dizziness.  That MRI started this whole thing.  The MRI was not done under MS protocol because that was not what the GP was looking for.  The anemia I don't believe is related to the MS.  The GP wants to do some more testing but I have ask him to wait until some of the neuro stuff is done.  With the iron supplements my hgb and ferritin are rising.  I have had EVPs, auditory, visual,and sensory.  The first two were normal the sensory showed some "mildly prolonged central somatosensory conduction after left tibial stimulation". The 29th of Oct. I had a neuro/psych exam that is where the diagnosis of "progressive memory loss" came in to play.  It was the dx the neuro wrote on the referral for the exam. I think that the referring dx can abt because I went to pump gas and couldn't remember how.  That happened on a day I was going to the neuro.   I can tell you the results of the neuro/psych exam aren't going to be pretty.  Even I could recognize area of deficiency.  I see the neuro again on 12/1 to discuss the exam. tommorow I see my  counselor.  I asked that a copy of the results of the exam be sent to him.  So maybe tomorrow I will know more.  The neuropsychologist did say he felt I probably had relapsing/remitting MS.  But his opinion don't count as far as getting started on treatment.  As to the LP the neuro doesn't want to do one until it is absolutely necessary.  Hope this helps to answer some of your questions.  If you have more feel free to ask.  And don't worry to much, after I realized I had left the skillet on the stove I was very careful the rest of the day.

[Lulu54]

Dear saveone,
Like you I wasn't looking for a dx of MSwhen I went to the doctor and mentioned my numb leg.  The MRI and the speed at which I was dx'd still boggles my mind.  I've also been trying to figure out what is a relapse and what is just a continuation of my symptoms.  At tines the dizziness/balance issues aren't too bad and then some days it is a constant companion.  

I had one of those days a while back where I felt so good I really knew I felt good and told everyone at work that ---- it lasted one day and the next day like you I was back to feeling not good and worse than I had before.  Is this a relapse too?  

Please be cautious with the angina and heart issues - don't take any chances with those, OK?

Anxious to see other's answers to you, Lulu

[saveone]

Thanks LuLu.  I have been careful with the heart issues.  I saw a cardiologist.  I wore a Holter monitor for 48 hours and I did a nuclear stress test.  Everything was fine.  No blockages or damage to my heart.  When the PA told me I said, "JD if I wouldn't embarrass myself I would get up from here and do the happy dance".  I was so tired of bad news.  So I check back in 6 mos and I take my Lipitor.  The only thing I have going on in that dept. is PVCs and they pose no risk since I have no heart problems or damage.  He offered a beta blocker or said I could just learn to live with it.  Considering I take 17 pills each day I choose to live with it.  I appreciate your concern.  Maybe someone will see this post and share their experiences with us.  I just realized that is what you said.  I told you today was a foggy day.

[Heather3418]

Since you feel that what you are experiencing has been happening to you for a long time, I have to agree with you, that you probably HAVE had this for alot longer than just starting at a diagnosis point.

In the very first stages of MS or even the first attack, it can usually be identified as to the actual start of the relapse and a definite end.  At least this is the way that most people start their course of MS.  In some people the very first attack, leave them with some lingering symptoms, although their other symptoms seem to abate altogether.

I too, know that I have had MS many years before I actually got a diagnosis.  Just random symptoms that I couldn't put all together.  Here and there I would have a problem, then finally I had a whopper of an attack that seemed to appear overnight.  It was about two weeks after a pretty bad upper respiratory infection.  I literally woke up one morning with my entire right side numb from my head to my waist.  Then the spasms started which I felt that I had never experienced before. L'hermitte's, syndrome, pain eye movement in my right eye with blurred vision.  Within one month, I had to use a walker to walk, along with a kind of fatigue that I have never experienced before.  Speech problems, forgetfulness, short-term memory loss, etc.  These symptoms lasted about 2 months, until I was put on a course of Solumedrol.  Things started to get better, but from that very "first" attack , not all of my symptoms ever went away.

The lessened in severity for a few months, then I was back in an attack again.  Suddenly all my symptoms became more pronounced again and the spasms were worse.  This time I experienced bladder problems, the MS Hug and bladder infections.  Then alot of numbness and tingling started.  Feelings of bugs crawling in one side of my head.  The feeling of water running down my leg.  This went on for almost 3 months, before my symptoms started to get less noticeable...but they were still present.

In the 13 years since I have been diagnosed, all of my symptoms have never gone away completely.  There hasn't been one day since that first attack that I have not had some kind of MS symptom.  The major one being spasms in my legs and severe spasms at that.  I have never known a day without leg spasms since I began this ordeal.

I judge my relapses and remissions, by an increase in the severity of my symptoms and then a lessening in severity of my symptoms.  This is the only way I can tell at all.  I do notice that the distinction between relapses and remissions are becoming even less distinct.  It is all seemingly running together.  Fatigue increase may be a major red flag for me.  If I have a very sudden, very severe increase with crushing fatigue, I can almost bet that I am going into another attack.

Now after 13 years I am having new symptoms of frequent tremors and more difficulty walking.  This is new for me.  And this has been going on now since the beginning of October.  My daily fatigue has also worsened for me as well as the feeling that my legs are heavier and heavier after walking only a short distance. Thank god for walls, or I would not be able to walk without falling down.  Heat tolerance was bad for me before, but now it's becoming worse.  That may not be MS at all, but menopause combined with worsening MS symptoms.

You are right...it can be difficult to know when you are in a relapse or when you are in a remission.  The changes may be slight or profound.  It seems to me that it gets less easy to be able to distinguish between the two, as the years go by.  Now it seems like it's becoming one long relapse with little to no remission for me.  Such is the course of many that start out with RRMS after about 10 or 15 years after diagnosis.

The very longest I have had a definite relapse was almost 6 months.  I really thought it would never end.  That was about 4 years ago.

The later the stage and length you have been diagnosed with MS, the more difficult it may become to know when something starts and when something stops.

Please be careful of your memory fog.  As Laura said, this can be very dangerous for you, if you are by yourself.  You need to make everyone in your family aware that this is happening to you.  Since it seems to be short-term memory loss, I WOULD conisder this from the MS.  A follow up with your Neuro every couple of months while this is going on is very important, I believe.

Please take care of yourself.  If we can help in any way, please let us know.

Big Forum Hugs and Best Wishes,
Heather

[Lulu54]

Heather,
Thanks for sharing your own experiences - that was helpful to me and I'm sure it will be to saveone as well.  Thanks again ,  Lulu

[saveone]

Heather thank you so much.  I think that is the first time I have come even close to understanding.  Also thank you for your concern.  Before the last two weeks where I have been feeling better, I had experienced the same symptoms with my memory.  I had developed ways to stay safe.  I would set the kitchen timer anytime I put something on the stove so I would remember to check on it.  I also set it when I let my dog out, etc.  This morning I didn't realize my fog had returned full strength so I failed to initiate my safety precautions.  I really didn't realize it could return that quickly and with such force.  Thank you for sharing.  I really appreciate it.

LuLu - I failed to mention the heart problems were a symptom of the anemia where it was so severe.  As my levels have increased the heart problems have all but disappeared.

[saveone]

Heather I forgot to say that was a good tip about the fatigue.  I slept all day yesterday.  I was so fatigued I couldn't keep my eyes open.  This without the MS isn't normal for me, a nap maybe, but not an all day sleep in.  I will watch for this in the future.

[saveone]

Bump.  I would still like to hear about others experiences as MS is unique to each.