@CheshireCat

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CheshireCat

Newbie, diagnosed, worried!

Hi all. It's my first post and I'm sort of... shy. I was diagnosed 2 years ago. Had my left eye almost blind and went to ophthamlmologist who decided to ask for an MRI (I told her I had diplopia 10 years before and she had a patient with a similar story that had MS). It was confirmed, so I went to a neurologist. He wanted me to go to hospital on Steroids. But I decided to get more opinions (and make net search, of course), just to find out that all neurologists wanted me to take heavy medicine, which I prefer to avoid as much as I can, while I can. In the meanwhile my eye recovered, to almost the same as before. Only a slight blur and not constant, I could see very well. I went to a homeopath who also makes electro acupuncture, so he could see all my weakness points and gave me natural meds for all. I keep going there every 5 or 6 months and am doing fine. Yes, I sometimes have needles and pins in my hands, I'm very aware of what fatigue means on a daily basis (never was before, even as a hard worker), and I feel my left leg weird, like if I was going to limp a bit, but never really limping at all. This happens only if I walk too much and specially when it's cold. That's all. Other than these annoying symptoms I make my life normally. Sleep, play, dance, run, only feel exhausted, but I can do everything. Now I'm worried!!!!! Very, very worried, to be honest. What if I should do that hard medicine? What if something huge happens that spoils everything just because I am doing nothing more than a healthy nutrition and nice supplements? Any opinions? Anybody else in a similar condition? Any help will be very much appreciated, thanks. Paz (Portuguese name meaning Peace)

Stumbler

@Stumbler

Hi @cheshirecat and welcome. I can understand your conundrum. If only we can see the future....... But, what we need to try and avoid is reaching the future and wishing we had made a different decision in the past. MS is wildly unpredictable and periods of remission can last years. You were diagnosed two years ago, when you would have had an MRI scan. It may be worthwhile having another scan and then comparing then and now. That way you can see whether there has been any progression.......

cameron

@cameron

You may change your opinion on treatment once you've read comments here. I do hope so. xx

CheshireCat

@CheshireCat

Thank you @Stumbler and @cameron . I appreciated both your answers. @Stumbler , you are right in everything you say. I'll have a second MRI done in a month, and also a lumbar puncture and the evoked potentials. This last one is not invasive and can tell a lot about the nervous system and MS. But I'll also have the others done, for sure. They are just exams after all. And very accurate ones, which is good. @cameron , of course I may change my opinion, that's the reason why I came here - to ask people about it and then... think! I'll be reading around, trying to get answers to my questions. The more I read and learn, the better. What makes me wonder so much is my good condition. I don't like the idea of taking a lot of medicine that I may not need by now. And I hate the idea of not taking anything and then find out I would have needed it and it may be too late. That's my dilemma. I was diagnosed two years ago but I had it (MS) much before, at least ten years before that, cause I had a diplopia. I had a normal life during these ten years and never thought I could have this condition (or any other, I was fine). What if there is some sort of MS that's not so bad and comes every ten years? I'd be 57 when outbreak #3 would happen... I'm not so fine as I was before outbreak #2 (2 years ago) like I said in my post. But my symptoms are, well... light? Sorry, I promise you I am not being arrogant, I know it is possible that all of a sudden I see myself in big trouble. But who knows? I can't stop asking... All the best for you, @Stumbler and @cameron . Paz

Stumbler

@Stumbler

@cheshirecat , I'd skip the Lumber Puncture. This is mildly invasive and doesn't need to be repeated once you have a diagnosis. The MRI Scan is the important test, to see whether your MS has physically progressed.

cameron

@cameron

If you haven't already done so, can I recommend a daily read of the Barts MS research blogspot. This is the best source I am aware of - not an easy read, but once you're familiar with it, you'll see the bigger MS issues (e.g. brain health, pros and cons of all the drugs) in the context of the latest research. Its authors are neuros at the forefront of MS research in the UK and you also get occasional posts about their clinical practice - which make fascinating reading.

lilbird

@lilbird

Hi there @cheshirecat I read your post & sat thinking about it for a little while. You've described some thoughts similar to some I had early after diagnosis, so having given it some thought I hope I'm able to explain my thoughts clearly without too much ramble :) It sounds like there are two parts of you in action here, the first part that is still a little in denial that hopes because all is well now that you'll be lucky & stay that way. Then the second part that can't quite let that lie because this is serious & forever & what if you're not that lucky. The first part wants to hang on to how well & normal you feel & doesn't want to mess that up by adding in medication that brings a regular reminder that all is not well along with possible side effects & unknown difficulties. The second part realises that the price for hanging on to that normal, well feeling could be far bigger than you are willing to pay & thinks that maybe you should act as soon as possible because this is serious & is forever, etc, etc. Sadly the only way to find out if the first part is right is to wait & see what happens whilst silent damage may be accruing in your CNS, all the time with that second part of you whispering little doubts & worries about what scary situation you might wake up to tomorrow, or the next day, or the next.... I decided I wasn't prepared to take that risk. I read a lot & talked (well typed) to lots of people on this site with much wider ranges of experience than mine. I read various stories about symptoms & years with or without illness. Eventually I came to the conclusion that I had to do everything in my power to skew the odds in my favour, everything i could to avoid the many & varied potential effects of this scary disease. One of the many advantages of a site like this is that you can get in touch with people who have been there & tried the wait & see approach & others & can help you identify in them a little of how you might feel in their place looking back. Basically what I'm trying to ask you is, if you have these doubts now, while as you say you feel well, how relaxed & happy could you really be for the next x many years waiting & hoping you stay that way? I hope this made some sense to you, didn't turn out too rambly & helps in some way!

CheshireCat

@CheshireCat

@lilbird what a great "point of the situation" you made for me! You got it, that's exactly what I feel, both the optimistic way and the very scared one. Thank you for thinking about my post with such a careful attention. Thank you for coming back with such a complete and helpful answer. Thank you for showing me that I am not alone in this scary way. I knew I wasn't, cause I have a great family. But my loved ones (fortunately!) can't share this like people here can. Here, we are all in the same boat... and I feel a great support with your help. I really want to return all the good you gave me, I'll be around and hope to be useful for everyone and provide comfort/help. I'l have several exams done, as I said before, and will bring news about it. I am so happy that I found this place, this forum, this people. Of course everything you said made a lot of sense to me. And BTW you weren't too rambly :)

CheshireCat

@CheshireCat

@Slumber the lumber puncture will not be a repetition cause I never did one, I only have an MRI done 2 years ago... Do you think an LP won't be needed at all? I'd love to skip it...

CheshireCat

@CheshireCat

@cameron took note of the Barts MS blog and will read it. Thank you for telling me, I had never heard about it!

CheshireCat

@CheshireCat

@sandwich That's what I'll do, I'll have a second MRI. Hoping for NEDA, aiming for it, like you said, but over all I should be prepared to face the result and take a position according to what will come out. That's it. Thanks.

Stumbler

@Stumbler

@cheshirecat , if you have a diagnosis of MS, then a Lumber Puncture will not provide any new information, apart from a confirmation of that diagnosis. Only the MRI Scan will provide details of whether your MS is progressing or not.

CheshireCat

@CheshireCat

@Stumbler good to know! I hate the idea of LP and I have my two Doctors in disagreement concerning that exam. The homeopath says I won't need it and only cares for MRI and blood tests; the neurologist says I should do it and, to tell you the truth, I don't see why. I don't even have severe symptoms by now. But I'm scared, I would dream of a "clean" MRI and see all this nightmare just disappear. Unfortunately, I'm aware that MS is a forever thing... :(

Stumbler

@Stumbler

@cheshirecat , I'm a bit surprised by the Neurologist. If they needed the confirmation that a Lumber Puncture gives, then this should have been done prior to giving you a diagnosis! A diagnosis of MS is a life-changing situation, so you would hope that that they were sure of their facts at the time. You have to question why they want this test and for what purpose.....

CheshireCat

@CheshireCat

@Slumber Thank you so much for being so helpful and thoughtful about my postings! I know nothing about these exams... I wish I would be a bit more well informed about all that crap. The first Neurologist who saw my MRI 2 years ago, diagnosed me. He made a full exam, reflexes, view range - mainly peripheral -, made me walk around doing things to see the balance, touch my nose point with eyes closed, and things like that. He said I was ok, very full of life, but had MS. I also felt I did make a very good job during this first medical appointment, I could easily perform every ability he asked for, so his diagnose was based on the MRI only. That's for sure! Then, as I wasn't happy with what he said and wanted a second (or more) opinion, I saw two more Neurologist docs, they saw the MRI and confirmed what was said by the first doc. They made similar exams, asked for same things, one made questions about world news, and I was aware and could perfectly discuss details with him, and he also said random words that I should remember in the end of the appointment, and I did. But only the first one asked for the LP, the other ones said "well if it shows to be needed". I ended up with a homeopath that has reputation and goes abroad for conferences and things like that. He also makes electro-acupuncture and has been taking care of me... and I am feeling good. If I had never made an MRI I wouldn't know I have MS. I only feel and know I have it bcs of all the research I made in the net... and the MRI. The research matches a lot with MS: I always had light but strange symptoms that combine perfectly with what is known about this condition. The sometimes slightly clouded left eye; the sensation of limping - but actually I don't limp, I ask my husband to walk behind me, my daughter too, they both say I don't, I just have the sensation I do, like my left foot is heavier than the right one; and the needles and pins in my hands. I also need to sleep a lot, always did. I mean more than 9 hours is perfect. I skipped dinner many times to go to bed and sleep early because of next morning schedule at work. I guess that, even without that MRI I would suspect... And I'm scared! That is why I am thinking about all the medical exams. I don't want to start on heavy medicine without knowing the extension of my MS. But I'm glad to know your opinion about the LP not being necessary! And I decided to find another Neurologist maybe one specialist in MS (some are). It's obvious, just by talking to you and all the wonderful people here, and by reading around some forum posts, that I'm too lonely, too ignorant and unprotected in this path. I need something that I still haven't found out. Someone who gives the feeling that I can rely on - and obviously it's a Neurologist!

CheshireCat

@CheshireCat

@Slumber Oh, and I forgot something important! When I say I have two docs - one homeopath and one neurologist, I'm referring to the first neurologist, who I visited only twice. I kept the Homeopath but, as the other two neurologists I saw confirmed the opinion of the first one, I kind of chose him to go back in case I need to... :(

CheshireCat

@CheshireCat

I'm sorry @Stumbler !! I called you Slumber in my two previous posts!! English is not my native language but my work was always bilingual, I had to say everything, everyday both in Portuguese and English, so I have no excuse and feel very upset about calling you something you obviously are not. I must admit I even thought to myself "why did he chose that name, maybe because of the fatigue?" I guess I'm nervous... Sorry! And BTW, sorry everyone if I make some mistakes writing. I'm an easy speaker but not so good writing.

Stumbler

@Stumbler

@cheshirecat , your English is very good. It's better than some of our native people can speak! :wink: And don't worry about Stumbler or Slumber. I'm Stumbler because I stumble, so I could very well be Slumber as well! As far as your MS is concerned, do see if you can arrange another MRI so that this can be compared with your original scans from your diagnosis. This will tell you whether there has been any progress in your MS or not. Unfortunately, with MS, this will not provide any indication of whether the MS will develop or not. It's a very unpredictable condition. As for improving your knowledge of MS, can I suggest a couple of websites :- https://www.mstrust.org.uk/ ; and https://www.mssociety.org.uk/ . Both UK based, but contain a wealth of information. Or you can always ask here......

CheshireCat

@CheshireCat

@Stumbler thanks for your advice and for your sense of humour - this is precious! I'll check the links and will keep reading around and asking here. I really need information. @orlando27 Hum... I don't know, I also feel that I am not sure about this MS DX and would love it to show up as totally wrong. But I sort of know it's not, because of the light symptoms I've been mentioning and always had them. And both of the outbreaks, even with 10 years in between them. All matches too well... Thank you for your advice and also for the sense of humour - precious, as I said to Stumbler I'm out of time now, will be back later and open the links provided by Stumbler

CheshireCat

@CheshireCat

@orlando27 I used the word "light" as opposite of heavy, so I guess I mislead you, sorry - English is not my native language and I don't get some subtleties. I should have said slight. When I say "light" symptoms I mean slight symptoms (won't forget this one) :) I don't have sensibility to the light (everybody has depending on the source), not particularly. I had diplopia 12 years ago; and left eye almost blind 2 years ago. Sometimes I feel a kind of mist in my left eye, since the 2nd episode. A slight mist. I totally recovered from diplopia and at first I thought I had completely recovered from the "almost blind eye" too. But there's that slight mist every now and then, only in the left eye. You are absolutely right. I'll find a Neurologist - MS specialist - and show him my second MRI, will have it done and will not let it fall in the wrong hands. I don't want to lose time, I need a DX, an accurate and right one. I suspect it will be MS but... I have to be sure. And mostly I have to know I can rely on the doctor that will be taking care of the condition, whatever it'll end up to be and, yes, I hope that will be something with a known cure (I have to say it's very hard to believe, cause I sort of know it is MS). I'm such a mess about this subject: I say yes, then I say I don't know, after that I suspect, and in the end I sort of know. Hugh...! Anything towards a DX will be a relief. Sorry for rambling! I feel ashamed. Thank you for your help.

CheshireCat

@CheshireCat

@Stumbler Great great links, the ones you suggested! I will have a lot to read, and even more because I'll be accumulating with this place here. I already feel a strong connection with people here, you are helpful, you care, you help, you are amazing! I made 9 friends and want to be close to you all, and others that may come. I want to be helpful too. I need to feel that I do for someone the things you all have been doing for me. I hope I can! Thank you. :)

Stumbler

@Stumbler

@cheshirecat , I can see that you have a big heart. We are all on a journey of discovery and acceptance with our MS. The further we are on this journey, the more experience and knowledge we acquire. So, be patient and in time, you will have this knowledge and experience, which you can use to support other members. We all have this common link of MS, which connects us together.

barryb

@barryb

First post to forum had MS for 12+ years (diagnosed) @cheshirecat I would recommend going on a MDM as soon as it is confirmed you have MS, that now seems to be the recommendation from the MS Nurses these days (well my one atleast when I seen her today). I played the wait and see do it naturally, MS diets, supplements the lot and they didn't seem to have an impact on the disease. Take whatever tools are at your disposal to inhibit this disease. The sooner you curb / lessen potential relapses the better. In addition eat well, sleep well and look after your physical and emotional hearts ;) and above all else do not keep doing things at the same level just because you used to, break chores up in to bite size chunks. Just my 2 pence :) All the best

barryb

@barryb

Apologies I work in Technology MDM = mobile device management lol so not relevant here, it should have been DMD Disease Modifying Drugs

CheshireCat

@CheshireCat

@orlando27 yes, the first thing will be going to the MS Specialist and he'll know what MRI I'll need. And of course I'll be back here with the results, and will bring information and just be chatting around with you all. :) It's quite normal that speaking foreign languages is not emphasized in the States, cause English is a "must know" language everywhere. And programming languages are becoming more important everyday... so you are a polyglot! I mean it :) @Stumbler I'm happy that you think I have a big heart. Maybe you're right, let's hope so :) I know I want to bring support to others in this hard path. And will. Everything I happen to know or find out or experience I'll share! @barryb Hi! Don't worry about the initials thing... All those are so new for me that when I saw your MDM I kind of read DMD because it's one of the few I already learned. :) You're absolutely right, I won't play the wait and see anymore. I'll keep the diet (mine is the Paleo diet, by Dra. Terry Wahls) because it really makes me feel good in every way, apart MS. I'll bring this subject in a different post, cause it's great! You're also right when you say I shouldn't try to do the things I'm used to do as I did before. By now I can do. I'm feeling good, just too tired. But I won't push or force myself in case I feel I can't. Thank you for your 2 pence! You know?, every 2 pence here worth a huge fortune!