Diagnosis maze

This topic contains 37 replies, has 8 voices, and was last updated by  MSBeans 7 years, 8 months ago.

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  • May 26, 2011 at 2:10 am #6407

    prisoneroftoday
    Participant

    I’m stuck in limboland right now, been symptomatic for 8 years though (just coming off the worst relapse I’ve ever had). Waiting for my MRI results to confirm the diagnosis (still stuck as “possible MS” right now so I haven’t had anything to help me through the spasms, pain, depression, everything). Anyone else in limboland? For those diagnosed: how long did it take to get your diagnosis?

    May 26, 2011 at 4:02 am #6542

    Lelainia
    Participant

    Hi Prisoneroftoday,

    So sorry to hear you are struggling right now. It sounds like you’ve been through alot.

    Because MS is a complicated disease, sometimes being diagnosed can take awhile. There are several diseases that have symptoms that can look an awful lot like MS and the doctors want to be sure they are making the right diagnosis so they can help you in the most effective way.

    It can be frustrating not knowing what’s wrong and scary waiting for results to come back. I’ve been there too. I had mysterious symptoms off and on for 7 years before I was diagnosed. I had a serious relapse in July of 2007 which lead to a trip to a neurologist in August of that year. He was pretty sure after doing the “touch my finger, touch your nose” tests in his office that I had MS.

    Following that appointment, he sent me for all the diagnostic testing, which took awhile, (due to wait times for MRIs, etc.) and by mid-December, we had the results. The way my MS was showing up in my body was a bit unusual, so I had to do some additional testing, just to be sure I had the correct diagnosis. My diagnosis was finally confirmed beyond a shadow of a doubt in early March of 2008.

    It’s hard to remain patient with the process when you are in pain. I hope that your wellness team can find the answers you need soon. Stay strong and let me know how you are doing. I am glad you are here.

    May 26, 2011 at 10:37 am #6543

    prisoneroftoday
    Participant

    Hi Lelainia, thank you for responding.

    It’s so nice to be able to talk to someone that really understands what it feels like. Friends and family have been really supportive but it’s not the same. It’s hard on them too but it’s just not possible to really explain how bad the pain is and how frustrating all the physical limitations are.

    I was 17 when I first started getting tremors and numbness in my hand. I saw the only neurologist in my city and he brushed me off completely, refused to even do a basic exam. I got sent to an endocrinologist and was checked for diabetes and thyroid problems a rediculous amount of times (I think it was 7 blood tests in 3 months) but the results were always normal. After that I stopped bothering with doctors because everything was going nowhere. I started looking things up on my own and was worried that it might be parkinson’s since tremor was my worst symptom in the beginning. Over the years I had a few relapses with violent tremors, numbness, fatigue, and intense migraines (I call them ice pick headaches because it feels like there is an ice pick going through my right eye and out the back of my head).

    I switched family doctors in 2008 and started my worst relapse at the end of March. Once I couldn’t use my left arm anymore (which was heartbreaking, I just looked at my bass and cried because I couldn’t play anymore) I finally saw my new GP about it. She has been amazing, she pushes harder for me than I push for myself. She sent me to the ER for a CT scan and it was normal. The ER doctor was really confused by what was wrong with me, but gave me a bunch of information sheets on tremors and told me it was not likely parkinson’s because of the type of tremor I have. She circled an area on one of the papers and said that was most like what I had (the part she circled started with “most likely cause: multiple sclerosis”). My family doc gave me a referral back to the same neurologist but sent a letter along with the referral pretty much saying “you’d better order an MRI” (the doctor that I saw in the ER signed it as well). He was hesitant to order it, but he did. He did an exam and found that I have no reflexes anymore, just a babinski reflex in my left foot (which scared the daylights out of me when I saw it).

    When I started to lose the ability to walk I saw my GP again because the pain and depression were just devastating and I started having visual disturbances (flashes of light). She sent me to the ER in another city to try to rush my MRI, but no luck with that. They ordered blood work and everything they checked was normal, but the ER doc there was amazing and took a good amount of time to talk to me about what he thought it was. The only thing he found odd was how young I was when this started, but said he felt that everything that I’ve gone through makes him positive it’s relapsing remitting MS. He gave me a referral to a neurologist at that hospital because he agreed that the one I’m seeing now isn’t taking this seriously enough. I go to see the new neuro in June.

    I had my first MRI on May 13th (the wonderful sweet woman that did my MRI chuckled at my F.U. MS shirt). I’m still waiting for the results but I’m going to start calling that neurologist to make sure he’s not just being lazy. I’m refusing to let him send the results to the new neurologist, I don’t trust him. I’m taking the results with me when I leave his office and will deliver them to the new neuro myself.

    As of yesterday, I can walk again without a cane. I still have spasms in my legs and arms but they are nowhere near as bad and I’m not in that much pain anymore and I don’t mind the numbness and pins and needles. Look a little drunk when I walk since my balance isn’t too great, but at least I’m not relying on a cane anymore (at the worst of it I couldn’t walk at all, I had to drag myself up my stairs and push myself around my house in a computer chair). The sense of accomplishment from just walking is incredible. It feels so good to finally start feeling healthy again, but I know that if I just drop this now it’ll come back eventually and maybe even be worse next time.

    My biggest worry at this point is something showing up on the MRI then having to wait for a second relapse or second MRI (or spinal tap) to confirm a diagnosis. I’ve dealt with this long enough on my own, I don’t want to dely treatment any more. Is it normal to hold off on treatment until it’s confirmed beyond a shadow of a doubt?

    May 26, 2011 at 10:39 am #6544

    prisoneroftoday
    Participant

    *started my worst relapse at the end of March of this year.

    May 26, 2011 at 2:18 pm #6545

    Anonymous

    Hi Prisoneroftoday,

    As I was reading your post, I was sitting here nodding my head. While your experience is unique to you, there are elements of it that others with MS can relate to from their own experiences. I too have numbness in my arms and hands and have a permanant migraine as part of my symptoms. I’ll be sharing how that’s affected my life and how I cope with it in my blog posts in the days to come. Perhaps some of my experience will ring true for you.

    To go from struggling to walk to being able to do so without a cane is HUGE. Good for you! It’s amazing how resiliant we can be-I think sometimes we surprise ourselves.

    You asked is it normal to hold off on treatment until it’s confirmed beyond a shadow of a doubt. Every case is so individual, it’s hard to answer one way or another. I know how hard it is to wait. It’s difficult when you feel like you need to do something but you have to wait for someone else to give the okay. But here’s the thing: you ARE doing something! You’re taking action by going through testing and asking questions.You are also reaching out here to get support while you deal with this phase of being in limbo. You’re doing the absolute best you can, given the situation at the moment.

    It’s a big mystery to unravel, but you’ve begun the process. I am holding good thoughts for you that this process will go as quickly and smoothly as possible.

    May 26, 2011 at 2:52 pm #6546

    Anonymous

    The site wasn’t working for me yesterday so I just had a chance to read these posts….prisoneroftoday keep fighting, getting diagnosed was the scariest part of my disease, and walking without a cane is a MASSIVE improvement…I had a relapse last february and I can just now sort of walk without a cane (by sort of I mean I walk without using it but can only go for like 1 min before I have to give in). It took doctors months before they finally diagnosed me…and I am pretty convinced I just got lucky. Ms is in my family so my mom asked every health professional who would listen if my symptoms were MS until finally I ended up at Sick Kids (I was 16). I have mad respect for your courage and your perseverance, I think your story is the reason why this site was designed. Lelainia has taken the words out of my mouth-every case is different…but we unite in our struggle to keep kicking a$$ ;)

    I hope to hear more from you :)

    p.s. I love the fums merchandise!…were you BT’s juno fest concert by chance?

    May 26, 2011 at 3:41 pm #6547

    prisoneroftoday
    Participant

    Thank you so much for the reponses Lelainia and Amanda. So sorry to hear about your relapse, Amanda. Keep it up though, walking for 1 min at a time is still better than not walking at all. Have you done physiotherapy to help take your legs back from the MS beast? I started an exercise routine on my own that focused on strengthening my legs when it was really bad and did very short work outs several times a day. It was exhausting but so worth it.

    I’m keeping my fingers crossed that the new neurologist will be the aggressive type when it comes to treating things. I’ve gone through that whole cycle of grief thing so many times already, I just want to start fighting back even harder as soon as possible. I can’t help but be really angry with the neurologist I’m seeing now though; I can’t get the thought out of my head that if he hadn’t brushed me off all those years ago, I could maybe be in better shape now. I suppose that’s pretty common though (if this were in isolated case I would let it slide but I’ve heard nothing but bad things about this guy from other patients and even doctors, especially when it comes to female patients).

    I can’t wait to read your blog, Lelainia. I’ve found a few so far and started my own (since most seem to all be post-diagnosis blogs and no pre-diagnosis ones) and I checked them frequently.

    p.s. I haven’t seen BT live yet, but I would love to. I can’t make it to Bluesfest, but I’m hoping they’ll play in my area again after the new album comes out. The FUMS merchandise is awesome, I’ve got stickers slathered all over my laptop and will be buying another shirt soon. I get asked a lot what FUMS is, which leads to the usual what is MS conversations, it feels pretty good to be able to help raise awareness for both.

    May 26, 2011 at 4:53 pm #6548

    Anonymous

    “I can’t help but be really angry with the neurologist I’m seeing now though; I can’t get the thought out of my head that if he hadn’t brushed me off all those years ago, I could maybe be in better shape now.”

    Again, nodding my head here. I think part of the problem is that the symptoms tend to mimic so many other illnesses. Family doctors, from what I’ve seen are not very knowledgable about the signs and symptoms of MS either. Not sure why a neuro would be slow on the uptake though and I can understand why you feel angry about it.

    Doctors are just like anyone else you’re going to meet-there are going to be some who you click with and some that you don’t. It’s important to feel like you have a good partnership with your wellness team-that they are listening to your concerns and addressing them.

    The grief thing tends to be an ongoing process. Any time you experience the loss of something that matters to you, it’s going to wash over you. There are good days and bad days and there will be some days where it’s a bit of both. I think life is like that most of the time, whether you have a chronic illness or not.

    It’s great that you’ve found so many ways to cope with the challenges you’ve faced so far. Blogging can be a very powerful tool in allowing yourself the space to express some of what you’re feeling and to get feedback from others. You’re working hard to keep moving forward. Keep up the good work!

    I think I need to get some FUMS stickers too-what a great conversation starter!

    June 2, 2011 at 9:12 pm #6549

    prisoneroftoday
    Participant

    I’m just…I’m completely stunned. The neurologist is once again on vacation but the secretary finally called me back to let me know that no, she will not provide me a copy of the report (I have to get that from my family doctor) and that she threw out the disc with all the images from my MRI on it because “the doctor never looks at those anyway.” She was unbelievably rude to me and I just can’t believe she threw out that disc and refused to give me a copy of the report (especially since she can’t legally refuse to give me a copy). All I can do is hope that the new neurologist at the MS clinic can get a new copy of the disc and report directly from the MRI clinic, or try to find some way to get to the clinic so I can sign their waiver and pick up the results myself. The stupidity of all this is mind numbing :P

    And yes, the FUMS stickers are fantastic, I love them. I got my bundle today so now I’ve got more shirts and the wristband to use as conversation starters when I don’t have my laptop with me *thumbs up*

    June 2, 2011 at 11:44 pm #6550

    Anonymous

    Wow, what a mess. I can’t even imagine how upsetting this is for you. Honestly, it makes no sense that the resceptionist would throw out your MRI images and refuse to give you a report. It’s stressful enough to be sick and to undergo testing and wait the normal amount of time to get the results, never mind having to deal with all this unprofessional behaviour as well.

    I am glad you are looking into getting a new neuro. I hope the new one is everything the current one is not. .

    Again, I am really sorry you’re having to go through this. No one deserves that. Hang in there Prisoneroftoday. I am holding good thoughts that things get better and you are able to connect with a neuro who is kind and compassionate and respectful towards you. May it be so.

    June 3, 2011 at 12:41 am #6551

    prisoneroftoday
    Participant

    Thanks Lelainia, it definitely helps to have somewhere to talk about this to people that have been through something similar.

    I’m really excited about the new neurologist that I’m seeing at the end of the month. I found out recently that I’m not being sent to the hospital’s neurology department, I’m going to the MS clinic. I looked up the doctor I’m referring to, and I’ve heard a lot of really good things about her (patient, very knowledgable, uses laymans terms). She’s part of the uhh…what’s it called…canadian network of MS clinics, so my hopes are high. I’m not entirely sure what to do now since the images are gone, but I suspect the new doctor will want to order a second MRI anyway (the one I had done did not include my spinal cord and was done without contrast).

    If there’s someone reading this going through something similar, don’t stop pushing. It’s your health, your life, and sometimes we just run into bad luck and have to push through it. Don’t let anyone push you around, and don’t stop until you have answers. It does feel like your life is being held hostage, and MS is the loaded gun pointed at your head. Just waiting for someone to pull the trigger, and every relapse is like getting pistol whipped to remind you the gun is still there. But keep fighting, and you’ll get through it.

    June 3, 2011 at 2:17 am #6552

    Anonymous

    I went through the diganostic process twice. I had the full head & spinal cord MRI both times,(2 1/2 hours each time “shootin’ the tube”) but never with contrast. I don’t know if they always need contrast, so don’t stress too much if they don’t use it. For sure, ask them if it’s necessary and get them to explain why or why not, just for your own peace of mind.

    The new neuro sounds promising and it’s great that you will get to be seen at the MS clinic. I have been a patient of the one near me for 3 years. We have 2 clinics in my area, both of which are a part of the network. I can’t say enough positive things about the standard of care I receive there. I’ve spent alot of time having treatment through my clinic and it’s comforting to be treated in a setting where they are knowledgeable about the ins and outs of MS.

    June 8, 2011 at 4:06 am #6553

    prisoneroftoday
    Participant

    Ugh man, 2 rounds of testing does not sound fun :S My MRI took about 20 minutes, I was really surprised by how fast it was. Heh, shootin the tube, I haven’t heard that before, I like it haha.

    Just over two more weeks, that’s all I gotta wait, just 2 more weeks. I keep telling myself that but it’s not really helping :P Keep having little mini freakouts (which I’m having now). My biggest concern is that I’ve read that active lesions sometimes don’t show up on MRI without contrast, and older lesions can heal over just enough to not be visible on MRI. So I’m worried that nothing is going to show up, I’ll get blown off again, and I’ll be stuck fending for myself even longer or worse, never getting an answer. From what I’ve read of this new neurologist though I really shouldn’t be concerned about that, she is an expert…after this much time, it feels like I’m going crazy a little, the only thing that’s stopping me from forcing myself to pretend it’s just all in my head is my lack of reflexes and a babinski reflex.

    I think just for my own peace of mind I’m going to have to write up a detailed list of all the symptoms I’ve had over the years and bring it with me to the specialist. I’ve had things happen that I really couldn’t explain and never even thought to contribute them to this even after being told it’s possible MS (things that didn’t click until reading up on this site, actually).

    June 8, 2011 at 4:36 am #6554

    Lelainia
    Participant

    Hi Prisoneroftoday,

    GLad you got your MRI taken care of. I think writing things down is an excellent idea! I usually write a list to give to my MS specialist when I go. Doing the thinking and writing in advance, when I am at home and can relax and focus on what I want to address is easier than trying to fly by the seat of my pants once I am in the exam room.

    I include things like:

    -symptoms I’m having, when they started and how long they lasted

    -any pain I’m experiencing

    -a list of current medications with the dosages and any side effects I’ve had

    -a list of tests I’ve had, who ordered them, where and when and any info I have on the results

    -any questions I want to ask

    Before I leave the exam room, I make sure I have any perscriptions I may have been told I need and I ask when should I see the specialist again for follow up. If there were any referrals mentioned, I ask when I should expect to hear from the office about those appointments. (So I know when to call them and remind them, in case they forget-it happens!) If I need to come back in, I make the appointment before I leave.

    My experience has been that if I show up to see any doc and I have my ducks in a row, the appointment seems far more productive for both of us. Usually the docs make notes right on the pages I’ve printed out for them, which I think is great because it shows me they are paying attention to the information I’ve given them.

    I hope your appointment with the MS specialist goes well and you make progress towards getting clarification on what’s happening to you. *fingers crossed*

    June 22, 2011 at 5:44 pm #6555

    prisoneroftoday
    Participant

    Well then, good news and bad news.

    Bad news: the MRI clinic never sent the results to the new neurologist. It’s a busy clinic, bound to happen that a request would get lost somewhere so no sweat.

    The good news: the MS clinic in Ottawa. I do not have enough good things to say about how I was treated today. The nurse, the receptionists, the doctor, they were all amazing. Patient, kind, good sense of humour, very calm relaxing environment. I’m overjoyed to be under the care of this doctor now. She really listened to everything I said, was extremely thorough in the exams (realized through her tests that I have permanent decreased sensation and weakness on the entire left side of my body), absolutely amazing. Extremely knowledgable, fantastic bedside manner. Since she didn’t have the MRI results, she sent me for bloodwork to do some hunting through my thyroid (it’s been checked before and always turned out normal) by B12 levels (which as of last month were normal) and to check for lupus. It’s pretty much come down to it either being MS or lupus now, and I feel oddly at peace with it. Either way, I know that I have a wonderful GP and neurologist on my side that will do whatever it takes to help me get better during the tough times :)

    I go back again on July 20th for the bloodwork and MRI results, and I’m looking forward to it.

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