I saw my neuro today whom I just love! After talking about all my symptoms and lots of other things, he said he was concerned about my level of progression. He was not aware how fast things were changing (that is fault). I tend to be the type that inly mentions thw things that are really bothering me. But this time, i made a list of all my symptoms and handed him my phone w it. So Monday I go for a new MRI.
I'll let everyone know the results when I get them.
OK Karen, keep us informed.
I'm so very saddened to hear about your escalating progression, Karen. Thankfully, they are getting you in promptly for another MRI, and you may soon have the benefit of keen insight from a trusted neurologist.
Please do post updates when you have them. Meanwhile, I'll have you and your family in my prayers.
Christopher
Hi Karen good to know that you have a good neurologist who is willing to listen to you and do something for you. What doctors etc don't seem to realise is that the appointment that you have made should be all about you, and the time they have allocated is your time. It's so refreshing to get someone who will listen and then do there best to help. I also like them who will call a spade a spade, and who will communicate in laymens terms. I have had difficult doctors In the past and got so frustrated with them that the next time I visited I took my sister with me and introduced her as my doctor which she was, she is now retired, the difference it made. I may have not known all they were talking about but I got action. I know I am fortunate in this experience but what I am trying to say some doctors will try and fob you off,, as we become just a number. Anyway how are things, are you coping ok? Blessings Jimeka
When I found out that I had breast cancer, I asked my husband's Aunt to go with me to my first appointment, she even told me which surgeon to choose. You see, she had retired as the head nurse over ICU for 35 years, at the same hospital and had breast cancer the year before. She was a great help when I forgot to ask the questions that I wanted to ask and asking those that I needed to ask.
Hi jimeka I am coping alright with the loss of Berk. I keep hearing him barking though...he is very missed.
Lucky you with a sis for a doctor! I bet that made the neuro sit up and take notice. The great thing about my neuro is that no one is a number. My first visit with him was 3 hours and I have never talked with him less than an hour. I don't know how he can afford to do it but he does!
Karen-X it's Fancy1959. I am so glad that your neurologist it's listening to you and got you set up for a new MRI promptly. Jimeka and the others who replied felt the same way for a good reason. MS is a disease you cannot hide from. If you turn your back on it and pretend it's not eating away at your body it might torpedo you in the back and knock you down making you totally disabled in no time at all. Don't take that chance and be proactive and make sure you know exactly what and where Ms is seeping into at all times. That way you have a much better chance a fighting it and keeping it contained. Please take care of yourself. Remember that together we are stronger!
Veey good. You organized yourself to explain better what has been going on invisible.Then he got the view. I did the same 2weeks ago, with a big notebook for dont forget any point and askes my Neuro before start new treatment for an new MRI, just did last week. Normally they request after 6 months for evaluation. And I need IV medication now.
Hi Karen-x
Your post is the second reminder I've had this week that I need to be more thorough in communicating everything going on to my neuro. Like you, I tend to only talk about the most troubling things. I hate feeling like a complainer so I minimize things at times. I also hate how long my list can be if I include everything!
Good luck with your MRI!
Hi Karen-x
Hope the MRI is good (or as good as it can. Be).
I only see my neuro every 6 mos. and since some symptoms are transient or mild enough that I adapt to, I'm guilty of not "complaining" of them or making light of them too.
Karen-x lm so sorry about what your Neuro is saying😞 l am going to focus on the positive here though.
I love how you kept track of EVERYTHING! It's so important, and l really need to do that myself. Ugh.
You also had your list with you! And your Dr listened.
These minor everyday things add up. And unless WE let our Drs know, they can't help us!😊
Karen, Good Luck
Jes🌠
I too have been trying to keep a running list on my iPhone for both my neuro and my PCP... 30 years of fighting the MonSter has claimed too many brain units (LOL)... Excellent idea keeping a running list! Honestly, I need to be more MINDFUL of doing this myself. As always, advice like yours HELPS US ALL!!! xo Cj
I'm praying for the best results and for clarity. I, too, started a daily log of symptoms when I realized how quickly they changed or appeared and disappeared. My doctor was surprisingly thrilled that I could hand her a printed list that she could keep with the chart. I figured she would think that all I do is focus on every symptom, but it was very helpful to her and saved a lot of time. With family here for the holidays, I've slacked off and am grateful for the reminder.
Hi Everyone,
Several of you have mentioned keeping a daily log of symptoms. I also keep a medical history log listing dates of scans, tests, changing of meds, etc. It's very helpful at doctor appointments as the same questions are asked at different visits.
Is there an APP that useful for tracking daily symptoms?
Hello Lisaanne0309, from Fancy1959 and welcome to this incredible Chat Room. You found a safe place where you can feel free to ask questions voice concerns or just join in the conversation like you've just did. Yes there are apps you can down load. Some of that depends on what type of phone you use. Whether it's an iPhone or an Android. Others depend on if you want to keep track of medication or injections. Other apps keep track of symptoms and their start-up dates, etc.
Just goggle MS apps and you will find 5 or 6. All were free except 1 or 2. I think the one i had was called was, "My Ms Manaģer or Managing My MS".
Please keep in touch with us and stay busy with the chat room. We can always use new members especially ones like yourself. Until we talk again I would like you to remember that together we are stronger. Fancy.
My thoughts are with you.
No follow up yet. It WS only Monday and I'm certain if it was bad my neuro would have called.
Karen-x I typed out a list last time and printed it out. She then immediately wrote the orders for my MRI's and changed my diagnosis from RRMS to SPMS. Also call some fancy guru downtown Chicago for me to go see. Sometimes I hate telling them everything. Because then they act all crazy and scare me a little.
See, you nailed it. Sometimes I don't want to say too much just because I fear they will tell me progressive. And no meds, well, I guess w the new one coming out for that its not so hopeless.( sorry for that phrasing). I even said to my neuro, in a whisper hoping he couldn't really hear me, that the P word had been running through my mind.
Did your neuro change your diagnosis after the MRI results or before?
Karen-x I have been diagnosed for 2 years, She just changed it last week. However, knowing I have had it for minimum a decade or more looking back. I think I was when I was diagnosed. my MRI isn't until next week. My symptoms just keep sticking around no matter the meds. So she finally put 2+2 together. I have been asking if there is something else wrong, like artists or something else on top of my ms. you know besides my dozen or for surgeries, Diabetes and broken bones. They kept saying no. Now they are changing their tune since all my blood work has come back negative for all that crap.
Interesting, I had it for at least a decade or more before diagnosis and I think that not unusual. My symptoms never really go away either. Well, cognitive comes and goes just w fatigue. Its never very far away.
Karen-x,
My first and second episode I had zero lingering effects. After my third I notice that I have some lingering effects that can either stay or come and go. My question is what that would be called in the MS world?
No new lesions or activity on MRI!
Symptoms but no MRI change?
Contrast no longer routine for MRI 
