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kelsey248
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/19/2009 4:19 AM (GMT -6)   
This is my first post and I'm not sure if I really belong here.  My story is a little different,or perhaps not.  We think it started a year ago just after I had my hysterectomy. That was done at the end of August 2007.  In November of that year I woke up one morning with the baby finger and ring finger on my left hand feeling like it had gone to sleep - but permanently.  I went to my chiropractor thinking maybe I had pinched a nerve in my neck. Treatments didn't help and the feeling just settled in deeper.  I went to my family doctor in Jan 08 who told me it was a classic case of a pinched nerve in my elbow and and sent me on to a specialist.  He in turn had me go to an Neurologist who did some testing on my arm - much like being zapped by a cattle prod for half hour or so. The specialist when he read the report thought it very strange that there was definite blockage but couldn't determine exactly where and so therefore would have to do surgury on my elbow and my wrist.  The surgury took place at the beginning of July 2008.  Here's were the story gets fun,or not so being the case.  about 2 weeks after the surgury I noticed my right eye hurt at times when I moved it. I explained it as feeling like when you have the flu and it hurts to move your eyes.  I called my optometrist and made an appointment for the middle of August.They weren't too concerned, so I figured I shouldn't be either.  At this point the headaches started, but it was hard to tell how bad they were because I was on pain killers for my arm.   On the Monday morning of the Civic Holiday (August 1st weekend in Canada) I woke up to find I had lost some vision in my right eye.  This started to scare me.  I work in the Emergency Services field and I knew headaches and vision loss was not a good thing.   I went to the local emerg and explained my situation - I thought I may have thrown a blood clot due to the surgury (there was a previous hx of such) The doctor in er looked in my eye with a light and told me to go home and take aspirin for 24 hours. At this point the headache with it was pretty good. Even with the painkillers it still was noticable. 
The next day I managed to get in to see my optomitrist thinking maybe it was actually my eyes.  He told me I probably had a sinus infection and to take antihistamines to see if it cleared up.  By the third day and the vision in my eye getting steadily worse as well as the headaches I went back to the local er dept.  This experience had to be the worst - long story short - this doc basically told me I had no business  being there and then told me that yes there was definitly something wrong but he didn't know what it was and to go to see my family doctor .(He was on holidays)
The following day I drove myself with the impaired vision to the hospital in the city and waited in the walk in.  Thank God, I got an awesome doctor who took the time to listen to my tale.  He even at one point sat down and said "tell me again, there's something missing".  He finally went and made some phone calls to an opthomologist who told him that he had described "optic neuritis".  He came back into the room to tell me what they believed it to be and then stated it was usually the first symtom for MS. Wow, not what I was expecting.  He then arranged for a MRI to be done asap and set up an appointment with a neurologist. 
Of course, nothing goes as planned - the walk in lost my requistion form for the MRI so when I called to find out about the times was told they knew nothing about it. blah blah blah . I ended up seeing the neurologist the day after my MRI so he didn't have the results. As best he could tell it was possible that this was the beginning of MS but couldn't be sure without the results. He felt that the arm thing was actually an episode. According to the MRI I have a few small high-FLAIR  and T2 signal foci within the centrum semiovale white matter on both sides. There are 12-15 on both sides. There are apprx 3 small  bright FLAIR foci with in the deep white matter in the centrum semiovale.
When I finally went to my own doctor he told me I had moved from the possible to the probable, but would have to have another episode to get a definite diagnosis.  So here I sit, waiting, for what I'm not sure.  
My vision came back by the end of August , but the headaches stayed well into October.  Now I only get a headache every couple weeks, and I know if I wake up with it, its good for the day at least.  My eyes I find still have tendency to feel like they are bruised when rolled - ususally if I'm tired or had a busy day at work.  I get flashes at night in my right eye. 
My big question is - how long does it take to heal? do the headaches ever go away?  what are my chances of having another episode of optic neuritis - is it going to be worse next time?  Other then the headaches and sore eyes I feel pretty good.  This has scared the daylights out of me and I'm not sure what I'm supposed to be feeling right now. I do know I'm very lucky that it is not much much worse. I've been reading some of your stories and believe you to all be earthbound angels. The courage is what stands out the most.  I guess I just needed to tell someone my story. Thanks for listening.    PS There has been nothing done for follow up - I was told if it comes back to call the office right away and he wants to put me on a steroid treatment - from what I've been reading that's not such a great idea and will refuse it.
 

bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/19/2009 10:54 AM (GMT -6)   
Hi Kelsey,
I am so sorry that you are experiencing such symptoms. As you probably are already aware, if you do have MS, that each person has a different experience with it. The doctors that you saw brings back memories for me. Before I was finally diagnosed with MS, I saw no less than 5 doctors explaining my symptoms to them. I think they all thought I was nuts so I stopped going to see them. I finally moved back to Idaho and saw a Community Care Doctor in town. He was a young doctor that was finishing his internship at the clinic but he listened intently to what I was telling him. He even had my wife leave the room so he could pay attention to what I had to say. After listening to me and doing a few checks on me he directed me to go see a Neurologist in the nearby town. I went and saw the neuro there and told him my symptoms and he directed me to take an MRI. I took one and he called me about 4 days later and asked me to come into his office again to talk to him. He then told me his diagnosis that I had about 12-14 lesions on my brain and he diagnosed me with Relapsing/Remitting MS. I was both shocked and relieved that someone finally listened to me and found out exactly what I had. I started on Avonex about a week later and took that for around 6 months when he took me off of it because it didn't seem to be doing me any good. He then put me on Copaxone and after 7 months of that he took me off of that also because I wasn't responding to anything. That's when he re-diagnosed me as having Primary Progressive MS and put on 2 CellCept Pills every day and after 6 months or so of those he told me that those weren't working either. He then scheduled me to go to Chicago to see Dr. Stefoski at Rush Presbeterian Hospital. I went to Chicago and Dr. Stefoski put me into the hospital to give me Treatments of Cytoxin. Cytoxin helped me tremondously but he warned me that it would only be short term. I didn't care because it felt so good to be almost myself again. I was then sent back home to Idaho and told to stay off treatments for 3 months so I could have all of the Cytoxin washed out of my system before starting me on Tysabri Treatments. I had 5 of those treatments and then my Neuro here in Idaho went to an MS Seminar and brought up my case to around 25 Professional Neurologists and they all told him that I should not be on Tysabri. One of the reasons I think had to do with the 2 cases of PML (Fatal Brain Disease) in Europe. I am now waiting to start my next treatment, which has been over 4 months now, and I hope to start them real soon. Well, that's my story. Hope it wasn't too boring for you. I am trying everything my Neurologist tells me so that someday this monster can be cured and others won't have to go through what the good people with MS are going through. Good luck Kelsey and God Bless you. We here don't exactly know what you are going through but we will give you all the support we can. Take care my new friend.


 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.

Post Edited (bohuck2) : 1/19/2009 10:00:35 AM (GMT-7)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3532
   Posted 1/19/2009 12:15 PM (GMT -6)   
Ok you two, first things first.  Please type with lots of little paragraphs.  When you type with one giant paragraph, it makes it nearly impossible for us MSers with bad eyes to track and follow what you have written.  I had to resort to hold up a book mark to read what you typed! 
 
Kelsey,
 
Of course I am not a doctor, but it most definetly seems as you have MS.  I know you are sitting on "probable" but in Canada, they have very different diagnostic rules due to social medicine.  The treatments are very expensive and they are not going to start you unless they are sure. 
 
In the US you would have the diagnosis already and if you had decent insurance, you could be receiving treatment.  You will just have to wait until you have another episode (also called a flare or exacerbation). 
 
You need to learn as much as you can about MS.  There is a lot you can be doing while waiting for another episode.  You need to live the healthiest lifestyle you can manage.  You need to eat well (avoiding animal fats) and exercise.  You need to add supplements especially vitamin D3.  Be careful not to take anything that will kick your (already very active) immune system into over-drive.  Don't take things like "airborne" or echinacea.  Get lots of sleep and maintain a regular sleep schedule. 
 
You can go pretty extreme on various MS supportive diets.  It is really up to you and what you think you can do with diet.  I am pretty into the diet deal but still just learning. 
 
Good luck and keep us posted as to how you are doing.  Welcome to Healingwell and I hope you find great support and friendship here.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3532
   Posted 1/19/2009 12:20 PM (GMT -6)   

One more thing, Kelsey.  Please ask lots questions if you want.  Tell me what you need?  Recommendations for books?  Sites?  Just ask, we are here for you.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/19/2009 4:12 PM (GMT -6)   
Yes Mother Gretchen. I shall use lots of paragraphs. :)

I guess I just got carried away.
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 1/19/2009 5:01 PM (GMT -6)   
Hi there, I am from Canada too - Edmonton, Alberta to be exact.....your story is so much like many others here, being sent to many different doctors - eye doctors, receiving dx for pinched nerve, etc - I have done it all!
 
Keep in mind that with MS, everyone is soooooo different. What Imight get, you may not, and vise versa.  Where I say that it may not return, it might for others...I can just go on general information that I have researched over the last three years
 
When I was first being diagnosed, the neurologist advised me that they like to see 10 lesions show up on an MRI before they are confident that it is MS. I have learned since then that this is being changed, going on not the number of lesions you have, but the symptoms that you get as a result of lesion placement etc.
 
My very first symptom was Optic Neuristis - where I had couble vision in one eye for 3 weeks. It did go away. But I am still troubled with vision problems, with some blurriness, dimming, etc - not often, but it is still there. Many of not all symptoms surface due to two common reasons - fatigue, and heat exposure. Will the optic neuritis come back, I am told that it is slim that it will, but vision problems will likely remain present from time to time.
 
Another similarity from me to you - is the development of more MS symptoms after surgery. I had a gall bladdeer op in the fall of 2005, and MS symptoms seemed to kick in a couple moths after that...
 
Im not sure what they are waiting for.....could you provide a list of your present day symptoms...ie...headaches/numb fingers/vision problems, etc.  If they are waiting for a "flair" it might not happen for awhile - but if you are having constant symptoms .... and you had lesions on your MRI - I am thinking that the next step for you should be right away.....
 
When a symptom does seem to act up, lay down and rest, sleep, etc.... as fatigue and or heat will bring this on......
 
One thing to keep in mind, MS is not the end of the world - there are treatments and coping mechanisms in place that will minimize some of your symptoms, and there are a ton of resourse people out there that are there to assist you.
 
as Gretchen says, ask any question that you have, we are all here to help, and there is a wealth of information right here in this forum
 
dont forget to send your current symptoms - pls and thanks
Gary
 

kelsey248
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/20/2009 5:12 PM (GMT -6)   
First. let me say "thank you" for the replies - 2nd - sorry about the paragraphs, I'll do better. I couldn't rely yesterday, because I guess I was hoping that maybe this was just a dream and someone would tell me it couldn't be. By you all stating it is - that threw me for a loop - had a little melt down.

As for present symtoms - my fingers on my left hand are still numb even after the surgury. I get headaches on a regular basis - some worse then others. I have lost some vision in the right eye , but mostly acuity - gets little blurry sometimes. I also get flashes noticable at night in the right eye.

I started taking a good multi-vitamin, omega 3's and just bought some Vitamin D3 when I first found out. As for resting, I try, but I work 12 hour days and nights. The night shifts kick the stuffing out of me - takes 1 or 2 days to recover , then I only have 2 days and its back to work again.

Thank you again - for your support it is greatly appreciated.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3532
   Posted 1/20/2009 6:56 PM (GMT -6)   

Oooh kelsey,

I am sorry if we brought the bottom up too quickly on this fall into MS land.  Those meltdowns are normal and necessary.  This can be a very tough adjustment.  Please know that we have all been there and you have our compassion and support.  Please let us know how you are doing.  For me the emotional part was everybit as harrowing as the physical part.  Please hang in there.  While you are waiting for your next episode, try learning as much as you can and research diet and exercise and meditaion or anything else you might think to improve your spirits as well as your body. 

Do you have the option for a second opinion?  You might want to try that as a way to increase your chances of getting on a treatment program.
 
Good luck and keep posting.  Thanks for the paragraphs!!!  I so appreciate it.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/22/2009 1:49 PM (GMT -6)   
Kelsey,
I can't believe you are working 12 hour shifts. That's terrible for someone who has MS to do that.  shocked
I was workling 4-tens every week but I was so exhausted that I told my boss that I would rather work 5 eight hour days so that's what I am doing now, and as for night shifts? That's a thing of the past for me.  rolleyes   I can't even start to comprehend how you do it. You must really be exhausted on the weekends. I feel really bad for you my friend. I have been there before, and I hadn't even been diagnosed with MS yet and I really got worn out doing it!  nono
 
Well my friend, please hang in there and please don't wear yourself out. Hope to see you on here sometimes. Take care and God Bless you!    
 


 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.

Post Edited (bohuck2) : 1/22/2009 12:55:00 PM (GMT-7)


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 1/23/2009 11:15 PM (GMT -6)   

Hi Kelsey,

Gretchen has given you really good advice.  I found I lost the bad fatigue when I cut out fats (dairy, anything fried, fatty meat, chicken skin) and focussed on lots of veg & fruit, lean meat.  I also take 3000 fish oil every day as it is an anti inflammatory and it seemed to get me over a blurry vision episode really quickly.  Try not to anticipate the worst cos everyone is different & I had relapsing/remitting for 35 years with only 3 episodes & I lived a full, active & normal life.  Then I became secondary progressive with symptoms all the time & getting worse, though the MRI at this stage only showed 1 small lesion.  These days there are good drugs that can stop the progression.    Wishing you all the best & a long & happy life  smilewinkgrin


Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream

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