Another Long Trip to the Docs…

Mr. CrankyPants and I made the very long 10 hour round trip drive to see two of my specialists in one day plus I had a nerve conduction test done. We wanted to get both docs in so as not to have to make more trips. This was on Tues. Sept. 18/18.

I saw a Neurologist up there for the first time. Thankfully she was amazing. I was seeing her due to a tremor I had. The nerve conduction test was normal thankfully but…

She found I had abnormal reflexes. They were too strong. So..

I now have to have a head and spine MRI done to look for MS. It’s not like I hadn’t thought of this possibility before, but when a doc has concern about it, then it becomes more real.

My second appointment was a follow up with my Rheumie. The Humira is helping me which is good. But (Yes again)…

It’s not helping enough and so technically I need to be taking it more often. Unfortunately I can’t do that right now.

I can’t do that because my Rheumie wonders if the Humira isn’t causing some of my neurological symptoms. So we actually had to make a decision whether or not I continue on Humira whilst I wait for an MRI or not. We decided to continue, because when the Humira starts to wear of the pain gets really bad. So we’re not upping it, just staying on the same dose for now.

Having said that I don’t think that Humira is what’s causing my symptoms and here’s why. When I saw a Neurologist as a kid for my epilepsy, I remember him being concerned about my reflexes back then. I was never on Humira then. Also the cognitive symptoms like struggling to get words out and finishing sentences started when I was on Methotrexate and not on Humira. My Rheumie said she’s heard of mxt causing that but she’s never heard of it continuing for people after they came off of it. I’m always a damn ground breaker.

My memory was bad before Humira and much worse after Methotrexate. So to me, the symptoms don’t line up with taking Humira.

I guess I will find out. Who knows when. The wait for an MRI can be a very long one. I don’t know if they’ll fast track it given my circumstances at all but I don’t hold my breath.

I have to say I really like the Neurologist. She was kind, funny, thorough and really listened. She went through my whole list of concerns. I totally trust her with my care. That’s saying a lot coming from me. I’ve had a lot of bad experiences and I don’t trust many docs. I’m glad that I can trust the one looking after my brain.

My Rheumie on the other hand, I’d love to smack her. She’s giving me the meds I need, but she’s arrogant. She doesn’t like to listen and god forbid you might suggest something to her. Or let her know what you’re not willing to put in your body. I tolerate her for now because I need her. I stood my ground and made sure she listened to and answered all my questions and concerns. I pushed for what I needed whether she liked it or not. It’s too bad though that I had to fight for it. It’s tiring. We were up at 4:30 am to make the long trip there so I was going to make sure she gave me the time of day. And I did.

Word has it they will be bringing a Rheumie into our city once a month again. If that happens and it’s a decent one I will switch so I don’t have to travel anymore or deal with arrogance. (Hopefully).

I’m trying not to think too much about what could come of this MRI, but it’s hard not to be scared. Last year I was given 3 diagnosis in one year and I’ve hardly had time to wrap my head around them, now this.

I’m tired and overwhelmed. And ticked off that we’ve had a lot of snow this Sept. Argh! Having said that things have been so busy, I just keep going.

How are you all doing?

Warmer Days & No Snow,

CrankyPants

19 thoughts on “Another Long Trip to the Docs…

  1. I’ve had a few of those nerve conduction tests, myself. That electrical shock feeling is no fun. Speech problems, eh? Hate to say it, but I’ve heard that’s another symptom of MS. But what the hell do I know, I’m a retired mailman.

    Liked by 1 person

    1. Hey Tippy! I know you from somewhere..lol I didn’t find the test too bad actually and thankfully. Sorry it was hard on you. Did you get results? Yes the speech thing is one of the reasons I’ve worried about ms. You know lots like when is my mail coming?

      Liked by 1 person

  2. Damn girl I was being to think you disappeared! I am so glad your husband was so wonderful! It is great to have a supportive and loving partner for this life we deal with. I hope you get your MRI results soon so you have answers to your questions. Always remember to get the rest your body needs and take care sweetie!

    Liked by 1 person

    1. Hey Alyssa. Sorry about that. I’m just so busy with the FB page that I mostly only blog when I need to document things for future reference. Thank you so much. I’m so grateful Hubby is willing to take me on these trips and be in the appointments with me. I couldn’t do it otherwise. There is possibility I could have to wait up to 6 months to even get the mri. I hope that they fast track it some though. How are you doing/feeling?

      Liked by 1 person

      1. Oh no apologies needed. I will probably be away from blogging for at least a few days. We are finally moving. Moving is exhausting and REALLY STRESSFUL! I hope you and your hubby have a great and relaxing weekend.

        Liked by 1 person

      2. I wish you all the best with the move. We had our house up for sale this summer for three months. It didn’t sell unfortunately. So we have to weather another winter up here and try again in the spring. We’ve already had a fair amount of snow. Take care of you in your move. It’s definitely stressful moving.

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      3. We sure have. It’s gone right now thankfully. Yes we’re in Northern Alberta Canada but this is the earliest we’ve ever had snow up here in the 7 years we’ve been here. And apparently the earliest in many years breaking a record. Usually we get snow starting in Oct.

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      4. The weather is a tricky thing and I think mother nature just does what she wants, whenever she wants! When I lived in Vermont, we would always get flurries of snow on my birthday, which is at the end of September!

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  3. It’s so frustrating when symptoms dot make sense and its hard to work out what the heck us causing them or whether they’re medications related. My dad doesn’t seem to have experienced any cognitive side-effects with methotrexate, but then again I don’t think they’re helping him enough joint-wise, either. Everybody reacts differently to things. I’m glad they’re running more tests and hopefully MS can be ruled out, but you’ll cross that bridge when you get there & I’ll be keeping my fingers crossed for you. Damned if you do and damned if you don’t really; you want to find something to explain the issues you’re having, but don’t want to find another condition to add to the list. I’m so sorry you’re having to go through all of this, and deal with a so-and-so of a rheumy! Sounds a bit like the neurologist I saw the other week; so ignorant, didn’t want to hear my thoughts, was beyond disinterested when I said I didn’t want certain medications because of the side-effects. You should be proud for staying your ground and making her listen. Do you have a date for the MRI yet? Sending hugs your way – deep breath, you can do this  ♥
    Caz xx

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    1. It is. You’re right. I feel damned if I do or don’t. If I don’t have it then they will take me off Humira and I’ll never be able to have any meds in that family again. That’s kind of scary. The reason I chose to stay on them for now is the thought of going back to that horrible pain at it’s worst was not comforting. Listening to a bunch of stories on You Tube about people with ms, some of my symptoms are very similar others aren’t. I don’t know. Thank you so much for your support. Sorry you had crappy Dr. It doesn’t help at all. Good for you for letting yours know what you’re willing and not willing to take. We are the ones who have to live with the side effects and we know our bodies best so we know better sometimes what we can and won’t be able to tolerate. No date set yet. I’ll be surprised if I get one any time soon. It can be a 6 month to a year wait but I’m going to call I think and ask to be put on a cancellation list.

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