Newly Dx and feeling lost

[bubbles_04]

Hi everyone, I’m not sure where to start…. Just before Christmas my left leg went numb, then my right leg joined in and I was numb from the waist down by the time I went to the doc 4 days later. I was still able to move, just numbness and I was tired a lot. She had an MRI of my back ordered because I thought it was sciatica. Which 3 years ago I was Dx with (however both my right leg and right arm were pins and needles and numb, was over in about 2-3wks I remember).  She said it was weird to have both legs numb and nothing showed up on the MRI. Then a week after my leg went numb my finger tips on both hands went numb. Told doc she ordered a MRI of my brain. They found “several” lesions in prime MS spots, so she called me in and told me “you have MS, and I think that sciatica 3 years ago was your first attack”. I cried, I cried really hard. Had lots of qs but couldn’t talk. By this time my legs were almost back to normal (just 2 wks) but even now my hands are still numb and weird. I’m not seeing a neurologist for another two weeks. My PCP dx MS with just symptoms and an MRI, so is this a dx? I have MS?? She didn’t say maybe, she said you have MS. I’m so lost and confused and I have so many questions…. I’m 28 thinking of starting a family…… It’s just really tough waiting this long to see the neuro and ask him qs. Is it normal for an attack/relapse to happen in one area and then spread to another area a week later? Or did 2 separate lesions cause my legs and my hands? I’ve lost no motor or cogitative function so that’s good….. but I’m scared, I feel alone and just was hoping for words of wisdom and support??

[bubbles_04]

Thanks jacksmom, I'm not too worried about it, its gotta happen so what can I do? Just gotta grin and bear it :).

I do have a question though the neurologist seemed to want to do it sooner rather than later but they couldn't schedule me till the 14th of march. Do you think I should just double check with him if possible? He seemed concerned that I was getting better and that the proteins might not be present by the time they do the LP. I would hate to have it done only to have it negative because its was too long after the flare. Anyone got any thoughts on this??

I know I will seem whiny but I just don't trust doctors to get it right sometimes, you gotta be on top of your health yourself. I'm going to be pretty upset if they do the LP and then the doc is like "oh its neg, prob because you are in remission...." Basically making the LP and the time off work a waste of time. Sorry if I'm seeming whiny to you all too :) Thanks for listening to my rants. I'm still ajusting to the whole idea of MS.

[Jacksmom516]

Hi!

While being in limbo is not fun - spent 6 months there myself - it does take time to get answers.  And while getting an LP is not fun either, it is not that bad,  I think the time waiting to have it done is the worst part of it.s  It is not as long process and as long as you do what they tell you it should be okay.  Caffeine before and after and laying down after can help prevent the dreaded headache.  I was fortunate, no headache after and just a sore back where she did the puncture and that was because she was trying not to mess up my tattoo!  LOL  I have a entire piece on my back - I told her I doubted someone would notice a pinhole and then it was
fine.

Do your reading, listen to what the doctor tells  you to do and you will handle this with flying colors!

Take care and we are always here if you need us!

[bubbles_04]

So the 31st came and the doc did a few neuro tests to test my nerves and all seemed great. I passed with flying colours. So at the moment I'm lucky no problems other than numbness. He ordered another MRI of my whole spine to look for lesions there because they think, from the brain scan, there is one in my cerval spinal cord around C3. He also ordered the dreaded LP which I'm having done on the 14th of march. It's scary but I understand its important in dx MS. He also referred me to the eye doc sorry can't spell the correct name to check my optic nerve.

I spend most of the time with the nurse seen the doc for about 5-10mins only and its seems after the LP I will be seeing the nurse again not the doc, I'm not sure if thats normal.

so to rap up doc said it could be MS because of the two accounts of numbness and the brain lesions, so I guess now hes just making sure with the other tests. Till thats all done though I still feel like im in limboland and will be for awhile.

[danawe]

Welcome.  I am late in the greeting and as newly DX'ed can't offer much help, but can welcome you.    

I am posting my own questions, but do NOT think MS will overly change my life.  At least, I have no intention of letting it!!!

Get to a doc and do the research.  

Welcome Again -  Dana

[kwarendorf]

So old and new lesions are visible without contrast and the contrast images show you which ones are which?

[Lulu54]

Hi bubbles, You are wise to wait until you see the neuro, but let me share a really basic lesson about lesions and enhancement.

What the radiologist is saying is that when you were given the contrast agent and more mris images were done, none of the existing lesions enhanced (which is a way they describe lesions that are "lit up" by the contrast.

Enhancing lesions in MS are lesions that are younger than about 40 days - they are the newer ones.  Old lesions and new lesions will both be visible without contrast.

Don't feel bad if this is confusing - it is a hard concept to grasp sometimes.    Anyway, just keep waiting - your neuro appt is soon.

[bubbles_04]

Thanks for the replies! I just did some internet digging and I think that I don't have any new lesions... because the MRI said 'There is no abnormal
enhancement" (I know I know, wait for the neuro) but I did have severe migraines in my teens... Auras, slurred speech, throwing up, fainting... for a good few years (I'm ok now but need to treat headaches fast or they will turn into migraines. So many thats why I have lesions... but it doesn't explain my symtoms or the potential lesion in my spinal cord..... Oh well I know I know WAIT for the Neuro :). I'm glad you are all here for me to talk to, it makes this whole process easier. Thank you all!!

[kerrtelli]

Hello and welcome.

To start off, I am a mother of four young children and diagnosed since October 2011.  I am new at this too.

Please don't despair.  Like others have said, MS is different for everyone.

You are young and can start meds that can delay progression which is great thing.

As far as having children, I have read in many different places that women with MS seldom get flare ups while pregnant.  Which says to me that having children can still happen for you.

Like I said, I have four and my youngest is four years old.
Love from a child is unconditional and blind.  So regardless of where your MS takes you, anything is possible.

I take copaxone every night and although I haven't seen any changes yet, there is hope that I will.

I am also 41 which in my own opinion makes a difference in progression of disease.  If I had been diagnosed at 21 when this supposedly all started, I would be much better off.

So what I am trying to say is that although you have MS, you are young and full of hope.

I hope my post makes sense. I tend to ramble.
Please feel free to contact me if you have any questions.

Kerri

[NormanG22]

Bubbles,

I would say my symptoms are worse as the day wears on, I have to pace myself to make sure I don't over do thing in the morning when I feel better.  I try to schedule my appointments or do other things in the mornings.  I get worn out fairly easily and around mid day to early afternoon I nap to regain some energy for the rest of the day.

Hoping the best for you with your appointment on the 31st.

Norm

[bubbles_04]

Thanks for all the comments and advise. I know you are all right I just have to wait to see the Neuro but I just can't help worrying and thinking about it. I think it is ok to do my research though, one professional MD (my PCP) that its MS, which means it must be very much on the table so can't hurt to learn.... you are right Lulu about being treated for the right disease and a good Neuro will hopefully explore this and I'm really glad to hear about the steroids!!.

I do have a Q though my symtoms got worse after my PCP told me (I guess makes sense) and in the mornings when I wake up they feel worse. Do you guys have a time of the day when your symtoms are worse??

[Lulu54]

Bubbles, the hard thing to understand is that most problems with MS advance slowly - neurological time crawls,  so waiting a while for a doctor appt or a treatment usually won't be a problem physically but it sure is difficult emotionally.

The steroids you were given, I am guessing, were probably oral pills.  And probably in very small doses.  To truly kick our system with steroids it needs to be a mega dose - it would be the equivalent of 25 prednisone tablets. So please don't think much about the steroids not helping.

Scared?  Most of us are trying to figure this out.  I can't encourage you enough to learn all you can about MS - it is powerful to have that knowledge.  As for family and future joys, there is no reason to not think about having children, but it is worth talking over with the neurologist.

Rarely will a PCP give a dx of MS, because it is a complicated disease. You want to make sure you are being treated for the right disease.  

hang  in there, the 31st will come pretty fast.
~L

[Sparkysarah]

I just wanted to say hello and welcome and there are so many new faces and names on the forum in this post that I feel quite an "oldie" although it not yet two years since i was diagnosed.

I remember so well wanting to speak to the neuro, get on treatment and hurry things along thinking that once this happened that it may all get better. It is a long steep learning curve and takes time to understand about the condition and your own personal experience.

You have been given great advice by everyone and i cannot add much more but just want to say be kind to yourself and ask for help when you need it as those around you are unlikely to see what you are feeling.

best wishes

Sarah

[bubbles_04]

Thanks for the warm welcome, very true lulu its not a club anyone wants to be in. Thanks sllowe, its true its not a death sentence but I worry about not being able to swallow or walk or worse... I guess I'm just scared.... BUT I am doing lot better, this is going to be day 3 no tears and its gonna be great. I think I'm coming out of the relapse as well, think in a few weeks I'll be feeling alot better.

Sooo the story so far... I go to doc about another thing (well lady) and I had been numb from the waist down for 4 days, so I casually tell her the situation and tell her I have sciatica 3 years ago before I moved to the states. Although the "sciatica" gave me pins and needles in my right arm and leg. She said to me... you seem too young for sciatica it could be MS or ALS... (the seed is planted) and gives me some steroids to help the "sciatica". I'm thinking I know its not ALS. If its ALS I'm the youngest person to ever get it, but MS yep I was a "perfect" candidate for that! but I highly doubted it. This was before xmas, I took the steroids over xmas but no real improvement. Then My finger tips went numb on my left hand, then my right hand and after a few days it traveled up my hand on one side of the hand.

The doc ordered a MRI of my back (nothing slight protrusion of L5 disc) THEN she referred me to the neuro but the neuro couldn't see me till the 31st of Jan. I hadn't told her about my hands, so I emailed her a complete dialog of my symptoms and she ordered a brain MRI with and without contrast. I knew what she was looking for but really hoped and thought it would come back negative. No such luck for me, lesions were found and the radiologist said suspicious of MS.... so she called me in and told me... You have MS. I cried as I guess it was all happening fast and I really, really didn't expect or want it. She told me now we wait till I see the neuro. Only problem I see is that my PCP couldn't read the MRI (well I don't think so) and just took the words of the radiologist. I now have sooo many questions about that MRI.... are the old lesions or just new? how many? how big?

Arrghh think my PCP could be wrong??

[sllowe]

HI Bubbles,

Adding on a belated welcome! Oh, don't cry! MS is not a death sentence. You had improvement after 2 weeks, and that's a good thing and the nature of the beast. If this does indeed turn out to be MS, then your official dx (at least in the states) would come from a neurologist. Your pcp should have referred you to a neuro once your brain mri results came in.

Not all lesions are MS, and you likely have just begun this journey into finding out the true culprit.

Did the pcp refer you to a neuro?

If this turns out to be MS there are disease modifying meds to treat MS. These meds can slow or even stop progression and drastically alter the course of MS. There is also symptomatic treatment for other complications from MS. A good neuro will investigate this for you. I hope you are going to one :)

Hang in there, and thank you for trusting us for advice :)
See you around,
-shell

[Lulu54]

It looks like I am late to the welcome party here.  You have received excellent advice and tips from the fine folks who already wrote  to you and there's not much I want to add right now, other than -

take this slow.  Give yourself time to process this diagnosis and take each step of this next process as it comes.  Don't over think it, but do spend some time learning more about MS so you can have informed conversations with these doctors and other medical personnel.

There's plenty of time to ask questions of us - we're around all the time and here for you.

see you around - and welcome to the club that no one wants to belong to....
Lulu

[jenphilly]

Bubbles -

Saw your post on my thread, but thought I'd respond on yours!   You mentioned about my experience / feedback so far on copax...  And keep in mind its only been since Friday, so its really new feedback :)

I did not like the thought of daily shots, but honestly, the needle is nothing, a papercut truly hurts more!  I use the autoinjector and really don't even flinch when I do the shot (and I'm a wuss with needles, not like I have a high tolerance!!).   The only thing to be aware of and they don't tell you beforehand is that the med will sting right after injection.  Its not the actual shot, its the tissue reacting.  Its not horrible, from the bottom of my heart, its not bad...  It starts off as a mild sensation, then kinda feels like using peroxide or such on a cut and at the worst its like a bee sting.  Its not exactly pleasant, but I have made it my routine to do the shot while I'm making dinner, so I'm busy and doing something, kinda use the mind over matter approach.  Its a sting, doesn't cause shooting pain or anything, and if I'm focused on something else, its a mild enough discomfort I can put it out of mind for lack of a better term.  It lasts 10 minutes or less, not a guess, I've actually timed it :)  It builds to the bee sting, then tapers off, all in 10 minutes.   I'll take that kind of sensation anyday over the thought of injecting into muscle...  but again, remember I'm a wuss for needles!  

When you meet with your neuro, hopefully you'll have a doc that is open and will sit and talk to you.  I changed neuros right after dx, my first guy literally was a big weenie head... my new neuro is a woman, is really a sweetheart and sat and talked to me and my husband for about an hour.   I loved that she did not tell me what to do, narrowed it down to the three options she felt were best for my circumstances and then gave me a pile of reading materials...  sent me home to do reading and encouraged me to reach out to online communities and do all the research I wanted to make a decision.

In all honesty, if you're given the basic 4 choices of first line meds, there really isn't a bad choice, they all have about the same effectiveness.  It's all a matter of what appeals to you...  how the med works with your body; how it's injected; how often its injected; side effects are a major consideration too; and depending on what kind of insurance you have, that might also be a major factor to consider.  

My only real advice to you right now is to start a log of what you eat, what you do, weather, etc. and keep it daily for a while.  One thing I found that has impacted me more then anything else is food.  I would have these really bad days and would not have done anything drastically different the day before.  Started keeping the log and we found a pattern of gluten being a symptom trigger for me.   Never know what pattern you might find.  It does not 'cure' anything, but like you, my legs are a problem for me, since eliminating gluten I seldom have a day I wake up with major leg issues.  

I'm a big believer of taking the bull by the horns...  I know I feel much better looking at this head on and trying to find ways to deal!   Being in the online community is a huge plus also.  I am on another site also, but honestly, everything I have seen and read here, this is one of the most positive, helpful and caring group of people I've come across.  Kick myself for not finding it sooner, but happy I'm here now!!

Good luck and keep sharing.  :)

Jen

[bubbles_04]

That is soo true about the stats and I'm confident the MS field will come out with new info and treatments within the next few years (although I do have complaints about the availability of getting research articles on MS. I'm a researcher myself but in a different field. I don't want to pay to read MS articles but I want to read them. THEY SHOULD BE FREE ACCESS... argh). If the neuro suggests a DMD I'm gonna take it, the stats look alot more promising for people who do. I'm also going to keep active and eat a healthier diet. Whatever I can do to help stop the MS. Was thinking copaxone seems the best... but I'll have to wait and see what the neurologist says.

[kwarendorf]

You're attitude and approach are perfect! It suc*s that we have MS, but we do. Mine went undiagnosed for 20 years and I'm "fine". I still do everything I always did, just a little less of it some days.

I started on Tysabri 2 months ago. It's a monthly infusion that takes about an hour. Because my MS was undiagnosed for so long, my official dx in October was secondary progressive MS. The CRAB's like Rebif, Avonex, Betaseron etc. tend not to work as well at this stage. There are 0 side effects that I can tell. I've had 2 infusions and feel just fine afterwards.

[JaneK1975]

I haven't started treatment yet, but I am due to start in another week or so. Something I learned about stats after watching a video on the history of MS is that these stats cannot really take into account the effects of the disease modifying drugs (DMD's) out there since the DMD's came out in the 1990's.

I look at the current stats as a worst case scenario and feel confident that, not only do I have a better chance since I'm going to be on DMD's, but in another 10 years, there will probably be even better DMD's available.

When I was going through diagnosis I found that the people who loved me the most were often the ones who denied the possibility of MS the hardest. It was tough, because I sometimes felt as though they were minimizing the severity of what I was going through. I just tried to remember that it was hard news for them to hear, too.

[bubbles_04]

Thank you both for your comments, It's nice to talk to people who have MS and really understand how I'm feeling. My PCP only told me on friday and I think I'm starting to feel more myself. I havn't cried for two days!! I'm doing my research so I'm learning alot. I think my hubby and family are hoping its a wrong Dx and I guess I am too but I highly doubt it. It's ok though if I have it I have it I'm going to do my best to fight and look after my health. I too was scared I would lose the ability to swallow or walk within a short period of time but the stats say 50% of people are still walking after 10 years. Thats pretty good :). Are you two of any treatments? whats it like if you are?

[Jacksmom516]

As a newly dx'd member I feel your fear and completely understand it.  Do what Jane says - read - write list of questions and then when you see the neuro you are ready.  This disease hits each of us so differently  and every day is different.

I know it is scary but knowledge is power especially when it come to illness.  and you are the best person to figure out what is right for you.  Take care and we are here if you need us!  

[JaneK1975]

Bubbles! I'm sending virtual hugs your way! It's okay to feel lost and scared. That is 100% natural. Remember that no matter what the doctors tell you, you are still the same person today that you were last week. And you will still be the same person next year.

Kwarendorf knows what he's talking about. Don't feel like you have to have an answer today or tomorrow. Do your reading, learn all you can, but keep your cool. I'm just on the other side of the diagnosis (a couple weeks out), and I can tell you that you will get through this. Someday you'll be amazed at all that you've learned.

My symptoms started with numbness very similar to what you describe. No one can tell you what tomorrow holds, but I can tell you that being numb today doesn't mean you won't be walking tomorrow. I remember that is what I was afraid of before I learned and experienced more.

Wishing you all the best,
J

[kwarendorf]

Hi Bubbles :-)

First things first, there is no normal when it comes to MS. If you put 100 of us in a room and ask us to describe our MS, you will hear 100 different stories.

Your Official Certificate of Diagnosis does not have to come from a neurologist, although most do. The first neuro I saw said she was 85% sure I had MS but told me I needed to see a specialist. So I did. He moved the % up to 98 and said I needed a lumbar puncture/spinal tap for confirmation. He did the LP but was a nightmare so I took the LP results to a new specialist who moved the % to 100!

I tell this tale to show you what the dx process may look like. The doc, regardless of his or her label, will do an extensive physical exam, see MRI's of your brain and c-spine with and without contrast and my want an LP.

MS can be diagnosed without having every item on the list. Your sciatica episode was possible your first MS episode. Mine was 20 years before my dx. This timeline will show up in your MRI. Old lesions tend not to show up in images taken with contrast, but do show up without contrast. The contrast images will show current, active lesions. It's the existence of both old and new lesions that would indicate MS.

Relapses are widely varied. Yes, you can have one set of symptoms on day 1 and new or different sx on day 3. During my last relapse, in July, I had a topical burning sensation on my legs one day and double vision the next. It all depends on where the lesions are and their current state on any given day.

One thing about MS is that it is most often not urgent. Other than your desire for information, it doesn't matter medically if you see your neuro today or in 2 weeks.

Welcome to our Club, unfortunately :-)