“When you were diagnosed with Fibrosing Mediastinitis, you were automatically put in to the weird category”

So I met with neurology today and in the beginning I wasn’t sure how it would go. When they checked me in of course they had to do my blood pressure. The nurse was going to do my right arm so I told him the pressure is always higher in that arm but I don’t think he heard me or thought I was joking because he continued to wrap the cuff around my right arm. Once he saw the result was high he simply said “you must be excited to see us.” I just smiled and looked at Tim. 

Once back to the room, the med student began his series of questions asking about my symptoms, how long I’ve had the symptoms, if I feel it’s getting worse, etc. He then pulled out a sheet of paper with even more questions, except this…was an evaluation…for dementia. I was asked to remember certain words, to draw what he drew, to write a sentence, he asked what date it was, where I was and then asked what county I was in. I looked at him and said I did not know but that I lived in Bremer County. He looked at Tim to confirm this then said he would give me the points. Ha, well thank you! He also asked me what was on his wrist and what it was used for aka…watch. Whewww, glad I got that one right! But really, what am I doing here?!

Tim was then asked a few questions about my symptoms and one of his responses was something to the fact that he had told me he figured the doctors would just confirm that I was goofy! Seriously?!  I mean I can see him telling my regular doctor this, but a new one?! Oh, and the guy did not laugh!!

After about 40 minutes of this, he finally left the room then returned with the doctor. As the doctor was reading through my chart he looks up at me and says “when you were diagnosed with Fibrosing Mediastinitis you were automatically put in to the weird category.” Everytime he said my disease he would look at my shirt as if to help him remember!! Haha! He admitted that with this disease, it’s very hard to figure out what is going on. I had informed him that I was scheduled for a sleep study in September, which he thought was a good idea, however, due to that being so far away he decided that he would also like to have an MRI of my brain done as soon as possible. Then, the twist comes.

He went on to say that it could be a number of issues from here to here (putting one hand at each end of the table on opposite sides) and anything in between. Again, he said with my FM, it is very hard to diagnose the real problem. 

IFFFF the MRI or sleep study does not show anything then he would encourage me to have a spinal tap done to make sure I do not have a build up of spinal fluid somewhere that would cause my symptoms due to the fluid not being able to drain adequately because of my SVC syndrome. Whoa, what?! I asked him if he did a spinal tap if that would for sure give me answers and he said no but it would at least rule out this possibility which is a very serious issue.

So, that is that and something I really wasn’t expecting, and something I probably won’t do…and I’m going to definitely give this one to God and not worry about it. Will just have to pray that answers are discovered on the MRI or with the sleep study.  

On another note though, I took Skyler to go get her school permit so no appointments that I have this week will be as hard on me as that was!! 😉😂 

Tomorrow is the big eye appointment so…to be continued!

5 thoughts on ““When you were diagnosed with Fibrosing Mediastinitis, you were automatically put in to the weird category”

  1. Barb says:

    Becky, you are in my prayers as you continue to try to get answers. Your faith is so strong and you amaze me more and more every time I read your blog. I look forward to seeing you on the 17th!!!! Love you, your favorite aunt!

    Liked by 1 person

  2. Lindsay says:

    You are so strong. Keep writing. And keep searching for answers. Unequal blood pressure + chest pain can be caused by Subclavian Steal. Need ultrasound and angiogram to confirm. Hope this helps.

    Liked by 1 person

  3. Lindsay says:

    You are so strong. Don’t give up trying to get answers. There ARE answers out there.

    Unequal blood pressure can be caused by Subclavian Steal Syndrome. This can also cause chest pain and fatigue. Need ultrasound and angiogram to confirm.

    Restless legs can be caused by venous insufficiency. Need ultrasound – and yes, you can have this w/o varicose veins!

    Also, ultrasound on neck veins (int. jugular) might help.

    Liked by 1 person

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