MS Symptoms

[Kurt25]

I posted this questions in another thread, it didn't get answered though.
I am going to repost it, and my apologies if this has been asked by some one else already.

Do MS symptoms happen only during flares? Or does it become part of the daily life?

What I mean do you get numb legs , vertigo, spasms, etc... 24/7 during a flare and then it all goes away and the body becomes normal once the flare ends?

Or

You get a numb hand for 10 minutes, then 2 hours later you get muscle twitches in the leg for 5 mins them 6 hours later you get vertigo for 2 hours, then it all stop to come back the next day with other symtoms, even if you are not experiencing a flare?

Do the symptoms happen during flares only? Or even in between flares?

what are your symptoms on a daily basis, and which ones you get during flares? how does the intensity varies?
Thanks for sharing.

[pecas88]

And let me add to my post Dear Kurt, I hope your medical problems do not lead you to MS, however if you have any questions..I will be happy to share any knowledge I have aquired. Wishing you all the happiness and joy.
Ill be here waiting for your reolys just trying to work on my smile :)
Ashley

[pecas88]

Hi everybody! I am 24 yrs old and have been diagnosed with ms since I was 19 yrs old. I have had a total of 3 big relapses. The first was just vertigo, blurred vision, and trouble turning my head (I had to physically use my hand to do so) it lasted about 3 months. The second was blurred vision, vertigo, terrible shaking, eyes going back and forth like crazy, headaches, back pains, tingling everywhere, that lasted about 9 months of my life. The third which is occuring now started about 5 days ago, I have blurred vision, vertigo, and a new horrible symptom..my left side of my face barely works..I can't smile..drink from a straw..barely close my left eye..it is not painful and I can still feel it is just not responding well..has this happened to anyone else? Does it go away during remission..I am very worried. I don't have insurance yet as it will be through my work in a couple of months. I have been trying to get some exersice..some sun..and I have been changing my diet and doing some facial and eye exersices everyday but I'm not getting any better. Does anybody have any helpful ideas? I don't want to live like this. I have a 8 month old daughter and 3 year old son and I can't even smile at them. It is very heartbreaking. Please if anyone has any answers I would greatly appreciate them. Thank you and I wish everybody great health and happy lives :)
Ashley

[sandythegeek2]

Hi Kurt.  Welcome to this forum. I'm sorry you are suffering and I do hope you get some answers soon. I am in limbo land as well. Please keep in mind that nobody here can diagnose you. If someone on here says you do not have MS, based on what information you give on here, does not mean that you don't have MS. Only your licensed doctors can give you any diagnosis.

Lulu gives great advice. I've been doing loads of reading and it helps a lot.

Looking forward to seeing more posts from you.

Sandy

[Lulu54]

Hi and let me add my belated welcomes to the mix here.  I hope you will stick around and ask your questions while you are looking for answers.  The journey might not lead you to MS but the folks here are knowledgeable about a whole range of other illnesses.

I have to back up and correct a statement - not having lesions appear on your MRI does not mean you don't have MS.  There are many ways you might not have your lesions seen through this imaging and we even have a health page dedicated to that very topic -

http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36

Please take some time to read that and it will give you a better understanding.

Just the other day I heard in discussion with a  very prominent MS scientist, Dr. Richard Ransohoff, that the VA is now required to look back at least seven years in the medical history to see if symptoms of MS were present but overlooked. That is especially good news for all of our military who have been discharged 'early' due to unexplained medical reasons.  

Welcome again and I hope we will see you around,
Lulu

[Kurt25]

Hi Doug,
Welcome to the forum and thanks for sharing your experience, and I hope that you are feeling better now that you are being treated for MS, the wait game seems much worse than the pain caused by MS.
I came across couple cases where the persons where X-military, tmakes me feel that MS is related to high stress.
My MRI has actually shown some  multiple tiny foci, one was located next to the corpus callosum, which is typical for MS. However it seems they need to prove that the lesions change with time in order to make a diagnosis. I am still waiting to see a Neuro.
My pins and needles/numbness is getting worse, I get it while walking, sleeping, sitting. my feet/hands don't go completely numb, but they have very bad buzz sensation, and i am still getting random muscle twitches all over my body. My memory is much worse, my eyes are slightly blurry, but I spend lotsa time working on computers, so it may be related to that.
I did a search on this site, and it seems many patients who had similar symptoms and their first MRI showed tiny scattered foci, were later on diagnosed with MS.
At this point I am well prepared emotionally to whatever it is. I just want to move on to the next phase, whether it is MS or not. It is like watching a bad movie that doesn't end.

[Doug0713]

Hey Kurt, this is my first post on here since joining today.  I was diagnosed with MS after having a severe bout with Optical Neuritis in Dec 2008.  Even though I had many symptoms of MS, like numbness in the left side of my face, and cognitive memory issues that are just horrible, the military healthcare specialists I was under would not send me for an MRI, so the disease was not discovered until the Optical issues in 2008.  The MRI I had confirmed that I had Multiple Sclerosis, and had it for many years.  The Neurologist just shook his head after reading my medical records and said you should have been sent in for an MRI, because your symptoms from years ago scream MS.  Anyway, back to your question, and note I am not an expert on anything.  It appears to me from you having an MRI and the fact that lesions were obviously not present, then you don't have MS.  Now keep in mind, I had eye twitching that lasted a couple weeks, and also I had a facial numbness that lasted a couple weeks.  Both went away without any medical treatment, but the facial numbness, along with severe cognitive issues were definitely caused by MS, which I believe was caused by a severe reaction to an Anthrax vaccine.  I was medically retired from the US Air Force after 19 years and one month service.  So they really wanted to get rid of me due to health reasons.  Note that I was not diagnosed with MS until a year after retiring.  I assure you if you have MS it will most definitely show up on an MRI.  I also suffer from Migraine headaches, severe depression, PTSD, arthritis, mixed sleep apnea, Irritable bowel syndrome, and more.  However the biggest is MS.  When I was first diagnosed with it I was crushed, but relieved to know finally what was really wrong with my health.  Sleep Apnea can cause cognitive memory issues, but not as bad as mine is.  MS has severely affected my brain in ways that are unbelievable as far as cognitive memory issues.  The Optical Neuritis which made me blind in by left eye, almost completely, went away with the IV steroids given to me.  It took about 6 months for the vision to get back to 70% of what it used to be.  Note, that my eyes had better than 20/20 vision before MS set in.  The fatigue that I had when I was on active duty was intense also, that hasn't gone away, I still get tired and dizzy at times.  I used to be in tip top shape from an aerobic point of view, I ran 12 miles every morning after working a 12 hour shift sometimes, and I was also a bi cycle cop at the free world largest Air Force base for years, and me and my partners would average over a hundred miles a 12 hour shift.  No, I did not run after those shifts, lol. The severe fatigue and pretty much all my health problems started after an Anthrax Vaccine.  My Neurologist, who was also military now retired (I was diagnosed on an AFB after I retired) said that I won't tell you that vaccines cause MS or other health problems, but will tell you the truth, and that there are way more instances per capita of MS from former US Military members, as compared to the civilian population.  I was started out on Avonex, and it was horrible, flu symptoms with high fever, ejection site problems ie redness swelling and big knot like tumors on my legs, liver enzymes being raised, and easy and ridiculous bruising.  It also seemed that my threshold for pain, like if one of my buddies punched me in the arm, you know the way guys are, lol, it seemed to hurt a million times worse than without Avonex, and I would have a huge bruise.  Just bumping into something would cause bruising.  I hated that medicine.  Now I take Gilenya, which words ok, and I don't have to give myself shots once a week.  I really, really, hate needles, and giving myself shots for over two years, once a week killed me.  My wife volunteered to give them to me, but I said don't you wish, lol.  I am a little concerned with the Gilenya deaths, but there is a high death percentage with avonex also, so you take your chances.  You don't have to worry about that, because you don't have MS.  As for the falling asleep of your limbs, mine do that every single night, and the heavier you are the more likely it is to happen.  It is not MS related, at least not in my case, and probably not yours either.  Keep in mind there are a lot of diseases of the nerves, and many are way worse than MS.  I just thank the Lord that my MS is not as bad as some peoples are, and I am not wheel chair bound.  Sorry to go on and on, and also sorry about the run on sentences, and hope this may have helped you some.

[tingletingle]

Hi Kurt,

MS is such an individual disease that affects us all so differenty.

I met with out MS peer support group today and we discussed this very point going around the table with our various symptoms. Most people had symptoms on either one side all the time in varyin degrees of severity depending on whether they were in a flare or not.

One lady had PPMS but didn't have any numbness or tingling just weakness which I thought was amazing.

For me my symptoms are on both sides (bilateral) and the numbness/tingling never goes away even if I shake a hand or a foot. I have it from the start of my chest to toes and in my hand and arm and my right hand.

You must be very frightened and frustrated with these weird symptoms but please know that there are so many diseases that mimic MS. It can also take a very long time to be diagnosed due to the complexity of ruling out all the other diseases first.

If you can shake away your pins and needles then to me that doesn't indicate nerve damage as per demylination, but rather, just as Sailorsong  suggested, perhaps you have cut off the circulation during sleep.

The very best of luck on your journey to find some answers. Please try not to let yourself become overwhelmed by all of this. Have patience and faith in the medical profession to help you get to the bottom of it all.

Peace brother
Blessings
Alex

[Sailorsong]

The numb fingers in the morning that become normal after shaking sounds more like you are cutting off the circulation in your hand while asleep. The same could be true for the pins and needles in your feet by how ever your are sitting during the day.

As for your question about how symptoms appear that is basically all of the above in simple terms. I have many symptoms that are permanent fixture in my life such as numb feet that never change. While others come and go as they want. These include my right hand tremor and daily hiccups among others.

Many years ago when I first developed MS I did have remissions where I felt almost normal, but never quite, and was followed by flares that for the most part left me non functional in many ways. But for the last several years I have just been getting worse each year.  So like DV said MS effects every person differently. Which is why the answer to your questions is all of the above. :)

Dennis

[Kurt25]

Thanks for the detailed response. I keep getting impressed by how knowledgable people are on this forums. I think even some doctors can't provide such good answers!
I am trying to figure out if what I am experiencing on a daily basis is related to MS. It has been 3 months since my symptoms started, even though they are mild most of the time and not disabling, I am extremely concerned.
My muscle twitches lasted only 1 month, but the pins and needles and general paresthesia are becoming part of my daily life for 3 months now.
If this is due to MS does this mean I am still experiencing a flare? Or perhaps this is due to sonthing else?
My symptoms are so random: waking up with numb fingers which become normal after shaking, random pins and needles in the feet during the day, random muscle twitches that last few seconds, some fatigue especially in the legs. I trully think if I wasn't so picky when it comes to my health, most of theses symptoms will go unnoticed. And now after my MRI came back inconclusive, I blame every thing I experience on MS .
Probably no one can answer my concerns especially that we are all different. Only time will tell.