Need advice!

Hello everyone.  I have a question to throw out there.

I have an appointment with an ms specialist on June 1st.
I am going there to either diagnose or rule out ms and put me on the right path to diagnosis.
I am pretty sure from all of my research, testing and speaking to people in the forum that i have MS.
I just need a doctor to tell me.

I know that most of you had a long journey to a diagnosis and know how much frustration there is in the process.
I don't have a real doctor, I use a physician assistant.  I think he's pretty competent and has done as much as he can up to now with his abilities,  he says that I need to be seen by a neuro and the soonest appt I could get was above.

Now i am in a position where i may not be able to continue working as a teacher because of my unsteady gait.  It gets worse as the week progresses.  By the end of the week I am completely shot and am useless to everyone. Including my family.  I am at a point where I almost have to decide whether to keep working and just bail on doing anything in then house or stop doing the job I have always wanted and love.  It really ***** and i am tired of this because I am pretty sure that if I do have ms and get the medicine i need i will get back to pretty normal and be able to function almost like i was before.

In three months i have had to stop singing in my band because of weakness and fatigue, I have had to stop volunteering at my church where i am very active and now I may have to stop teaching music.  The job I have always wanted and just started this past September.

Help!!!!!  I just don't know what is right and I feel afflicted which I never have before.  I have never given up on anything.  But I never had physical disability that made me immobile.

Thanks for listening and I am hoping to hear from anyone who has experience with this.

[twopack]

I wish you patience for the next month and answers after that.  It seems you could wait to make any decisions on your career and lifestyle until after you see the MS specialist since in many places the school year will finish this month.

I assume you discovered in your research that MS is a progressive disease.  There are many ways to treat symptoms and we always hope our DMDs will slow progression but nothing really gets or keeps us anywhere close to where we used to be.  Still, some days are much better than others and you learn to pace yourself between what must be done and what you enjoy doing.

Otherwise, I'm not sure if you had a specific question you wanted answered.  I'll try to check back later.

Mary

[Sidesteps]

I'm sorry you are going through this. I'm in limboland as well.

I thought usually (not always) with MS you have good spells and bad spells. You have an attack then it gets better....then another attack and it gets better. How long have you been feeling this way? Did it progress slowly or hit you all at once and you just didn't heal? Have you ever been on steroid treatment?

My suggestion is to pull every test you have had - labs and MRI scans to bring with you - and create your own folder. Draw a clear timeline of your symptoms.

For me, my MS Speciailist did one of the the fastest appts. I had. It felt rushed. He didn't even go over the list of symptoms I had. He did a rather simplistic neuro exam (the best neuro exam I've had was from my Hematologist who was evaluating me for my blood disease. Kinda scary huh?)

The MS Specialist clued into a couple things and sent me off. He ordered a couple other tests that were missed (Lyme, Sarcoid and a VEP for Optic Neuritis.) They were all negative and he had no interest in look at more (I called and left a message for the nurse with no answer) so I am now pulling EVERYTHING (chart notes, labs and ALL other tests I've had since this start last year) to take to my regular (previous) physician. I'm hoping he will no where to go from here.

I wish you well.

[sllowe]

Hi there,

Nice to meet you. I can appreciate your position. You want to be able to get along, albeit it tough, and that can't be done after a day at work.

Picking/sticking w/ work means you sacrifice home and body, but you get a paycheck and some quality of life and sense of worth with it (not to mention what it took to get it). And home, you sacrifice the paycheck but gain quality of life because you can manage the new lifestyle with more time.

Tough, tough scenario. You may have to put this on paper. Look at the pros and cons no matter how silly the thought is and then of course the hard core facts. The decision may be obvious once you see it written down.

In the meantime, June is around the corner, and you'll get to the specialist to know for sure what is going on. Don't beat yourself up over not volunteering and doing the extras now. Taking that burden off yourself will relieve a lot of pressure. And, when you can do it - go. Your friends there will understand :)

Thanks for joining us,
-Shell

[wiggles94]

Hi- I haven't been around the forum for a while, and don't think I have met you.

I can relate to your story, as I am a teacher - and I retired a bit earlier than I wanted to due to possible MS.   I was dx at 55 - and began disease modifying meds, and was able to take off for a year as I tried to get back to normal.  I realized that my new "normal" did not allow me to teach anymore - just didn't have the energy.  I taught first grade, and after 18 years, I fully understand the energy, time and focus needed to do that job.

Even for me (I am older than you) the decision to leave my job was very difficult.  As Shell mentioned, summer is coming soon (but I know it probably seems a LONG way off if you're not feeling up to your job!) - but can you hang on until then?  Can you find someone at home to support with the housekeeping etc so you don't have to worry about that and you can rest up on the weekend?

I was able to take a year off (I had lots of sick days) to see if I could get back to work.  Are you able to take any time off as you work to figure things out?  

One great thing about working - it took my mind off my health issues - and of course I love working with children.  But I had reached a point where I just knew it wasn't in my best interest, my families best interest, or my student's best interest to continue anymore.  

This is a very individual decision, and with lots of thoughtful consideration, help from families and friends (and people on this great forum)and hopefully a great DOC,  - you will come to the decision that is best for you.  I did LOTS of writing during this time - pros/cons - etc - This helped clarify things for me.  

One more thing I wonder - are you able to get any help with your symptoms from your docs now?  My biggest issue was fatigue and focus - I tried adderall (adderrall) - Instead of waiting until you see the neuro, could your PA help with symptom management?
Best of luck to you - and feel free to send me a private message anytime!
Carol

[kerrtelli]

Hello.  I appreciate all of your replies and am going to take the advice.

At school today, my Principal sat down with me and explained at she s concerned about my health and that working so much will make me worse since i have to wait to see the doc.  She shortened my days, since I am hourly, and made my schedule much more bearable.

I work in a catholic school and that is where the flexibility on their part comes from.  S for now, i think i will be able to deal with the new schedule.  I will work two full days and three half days.  This will give me the chance to rest before my kids get home from school.

I have a physician assistant that i see and he has said there is nothing he can do.  He doesn't what to give me mess that will mask my symptoms prior to the appt with the ms specialist.

I was wondering if there is anything i should say to the doc if they. Are dismissive related to my symptoms.  I have had problems since the beginning of April.  They haven't subsided since then.  A woman at work is a former neuro RN.  She said that the reason my symptoms aren't subsiding is because normally, people with MS are on mess that slow or stop the progressive symptoms.  Since i haven't received anything in terms of medication, my symptoms aren't stopping.  I am usually pretty good in the AM but start having a harder time towards the afternoon.

That's it for now.  I have to say that if this doc tells me I am fine, i am liable to have break down right there in the office.  I would rather be armed with information and not get emotional.  I am not the hysterical type by any means but I am gutting fed up with the medical people.  I haven't even been going through this nearly as long as some of the people on this forum.  I guess once summer rolls around it won't be so difficult because i will be able to move at my own pace.  A very slow and unsteady pace.  I any of you knew me before this you would realize how slow I am moving.  I am usually doing many things at a quick pace.  This forced slow down is tough.

Once again thanks for all of the help and i look forward to responses and hearing from you all regularly.  I don't know who I would be talking to if not for this forum.

Kerri

[wiggles94]

So glad you have people at work who seem to understand what you are going through and are working with your schedule - just so sorry that you are going through all this.

I went back through your old posts to get some more info re what testing etc you already have done.

AS far as your appt on June 1 - go in with an open mind - don't go in telling the doc you have MS>  Let him listen, look, and make sure you have all your questions/concerns written down so if he isn't going in the direction you think he should - you can lead him there.  Don't leave until you have a solid plan/direction, all your questions answered, and know what the next step is.  You may not have many answers your first appt.  I know many neuros like to really take their time, and watch a patient over time if MS doesn't shout out at them.  ANd you want to make sure you have the right dx - no reason to be treated for the wrong disease!

As far as your symptoms stopping - the meds that slow the progression don't take care of the symptoms.  That's why others on the forum were encouraging you to ask your regular doc to help with meds for the symptoms.  With relapsing remitting MS the symptoms come and go - but the disease modifying drugs don't put you in remission.  I know others on the forum have gone on steroids to help get them through a flair quicker - maybe someone could chime in on that.

For now - rest as needed - avoid stress (HAHAHAHHA) - try and do things you love - anything that will calm and soothe you while relaxing your brain and body.  For now - you may put yourself first - and hopefully you will get this all sorted out.  Hopefully the more time you can spend resting, the less your symptoms will flair.

Best of luck to you Kerri.
Carol

[kerrtelli]

Thanks so much.  I did notice that when irest, the symptoms aren't as bad.  You did shine light in the med question.  I did think that the mess the neuro gives for ms stop the symptoms.  Do you think i should wait to see wthe neuro before taking anything?

I am just afraid that i will get there without screaming symptoms and they wont believe me.  Isn't that silly that would I  rather suffer than have the doc think i am not telling the truth?
Since you looked thru my precious posts, what would you suggest I take for the sympsoms?  My instead gait and spasms in left leg are what cause the most mobility problems.  My foggy thinking, loss of words and fatigue are the invisible symptoms not as noticeable.  When i am really fatigued my speech starts to slur.

So, it looks like if I lay down and do nothing I will be fine. HA HA HA HA!
Again, thanks for your words of wisdom, they really help.
Kerri

[wiggles94]

You ask some very insightful questions - and you remind me of the journey I was going through a year and a half ago - (and still am - just at a different level I guess).  I am more accepting of what's happening and feel less anxiety as I understand my body, the process and MS better.

None of your thoughts are  silly - When you read a lot of these posts - you may get the idea that many docs just ignore patients - and don't believe what they are experiencing - Don't fall into the trap of negative thinking. (easier said than done sometimes)  THere are good neuros out there - Don't go to your appt with any apologies - what you are experiencing is real - and if your doc is good - he/she will listen and help -  You will know pretty quickly if it's the right doc for you.  Don't waste time with a doc who won't listen and acknowledge what you are experiencing.  MS is a very complicated disease that affects physical and mental aspects of who we are.  In that sense you may feel very vulnerable and scared.  Take yourself seriously - and take your docs seriously - and this is the hard part - try not to take your docs personally.  They are people too with a whole history we know nothing about  - just find one that clicks with you - and validates you and is willing to help you go through whatever is happening.

You are your best advocate - and one of the reasons you need to keep a journal is so that you share your symptoms - and briefly describe all that you have been feeling.  A good neuro knows that MS symptoms come and go.  That's the nature of the beast.  So you have to decide on quality of life as you work at getting a diagnosis.  So while you are waiting to see your neuro - you could ask your regular doc if he could prescribe - or rest as much as possible and then discuss with the neuro.  It all depends upon how badly your symptoms are I guess - But I would think if you are going on June 1 - by the time you get in with your regular doc - it may not make much difference. And I would think your neuro would know what you need to manage symptoms better than your GP.

As far as meds to ease symptoms - I have tried adderall (adderrall) for the fatigue - hoping that would help with the foggy brain, spaciness and difficulty attending I was experiencing.  I didn't take it for too long, as it made me a bit hyper and I found I was still foggy and had difficulty but then it turned into feeling those more acutely - and I would still be tired, but wouldn't be able to quiet my body to sleep.  I know provigil and nuvigil are also prescribed for fatigue.  My sister takes provigil and seems to do well with it (yes she is going through what we are as well)>

For difficulty with spasms and gait (which can be affected by spasticity) I know others take baclofen.  If you go to this page :

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Common-Multiple-Sclerosis-Drugs--Medications--Treatments/show/108?cid=36

you will find many common drugs that are used to treat MS symptoms.  Remember - these are not disease modifying drugs - they do not slow the progression or lessen the number of exacerbations - they are used for symptom management.  I got this site from the "health pages" at the top right hand sit of your screen.  There are many excellent articles there that can help educate you as you go through this.

I am no expert in any of this - I just know what I have read from many of the wonderful postings here - I have done a lot of research in books and reputable sites such as the national MS society, and professional journals - I have spent many hours trying to find answers to questions that sadly enough - still can't be answered when it comes to MS.  And since my sister is on the same journey - I have her as well to share/learn from.  But I am just like you - trying to figure it all out.  That's why I love this site - we can lean on one another.

Be patient with yourself and others as you go through this journey but surround yourself with nurturing people.  Rest rest and rest some more.  I get into trouble when I beat myself up for resting - do too much - and end up having to rest more than ever.  It's a balancing act - how much can I do without over doing - changing expectations and accepting what is.  

I think you are very smart for reaching out to others - asking lots of good questions and preparing.  All hard work!  
Be well.
Carol

[summerluvr]

Hi I just wanted to say hi.  I don't have MS, but had MS symptoms that kept getting worse and the doctors could not figure out what was wrong with me.  I have a rare blood/ bone marrow cancer called Multiple Myeloma. I am in a remission now after aggressive treatment. My diagnosis took a few years.

It was very hard time for me.  I felt so bad most of the time and the MS doctor (specialist, though I would not really like to call him that) kept saying there was nothing wrong with me (yeah he missed my cancer diagnosis) Somehow I still managed to get up everyday and go to work, but I was going to sleep everyday on the couch at 7pm and not all there at times.   I was diagnosed with MM in the ER when I got very sick and collapsed at work and went to the er.

I hope your Appointment goes well.  I know the next month will take forever for you. But in the grand scheme of life, it's only 1 month right ;)  I just want to caution you to be strong.  My experience with MS doctors is they seem to be quite arrogant, and do not treat the patient as a human, only as a case to rule in MS with standard signs, or else the lump you in the *other* pile and discard you without looking for answers.

Can you get your PA to order an MRI ahead of time? (my dr. did this) and also have your doctor do a bunch of blood work to rule out other stuff. I don't know your story so maybe you have already done this


For my sitution a basic blood pannel would have shown I was quite sick

Also, Dont Get Ahead of Yourself too much!  Right now focus on some answers, but don't quit your career!  You can find ways to work if you really love your job!  Maybe in the future you will work part time, but right now the year is almost up and you will have the summer to think things through!  You can always take a  leave of absence until you get your health under control.

I am just back at work now after 15 months off and I am ver happy to be here and joining the "normal" work life agian.

[kerrtelli]

Hello everyone.  I appreciate all of your answers.  My gait was pretty good today and I left school early because of my new hours.  I came home and slept for two hours.  I got out of bed and low and behold my legs were acting up again.  They were like lead pipes.  It is so strange.  The leg problem comes and goes on a whim.  Some days and can move fairly smoothly and other days i look like  am 90 years old.  Is this typical with ms.  I always have my cane because my left leg gives and i never know when it will happen.  As soon as i think i don't need my cane, I need it again.

I am going to check into the med issue.  I am wondering if my gait will every get better.  Does someone with ms who has the unsteady gait get more steady with time?

I m just wondering if i will ever be able to dance with my little guy again.  My three year old was dancing in the living room and asked me to dance with him and i told him i couldn't.  He said, "mommy did you fall?". I didn't know what to say to him.  He doesn't understand my legs are weak.  I don't  even understand whats gong on.

Either way, my husband came in advanced with him and he was happy.
Thanks again and I'll  check in soon.
Kerri