As I mentioned in my last post, I was scheduled for an appointment with a neurologist after being able to more accurately and effectively communicate what’s going on with my hands. I’ve tried to describe it consistently as “they just don’t work right…they don’t do what my brain tells them to do…they’re clumsy and weak…I feel like I’m losing my fine motor control” But yet the doctors (the ones that didn’t flat out ignore this symptom of mine) tended to equate it more with numbness and tingling. That’s why I first went for the NCS/EMG study that showed normal nerve conduction and muscle response to those nerve signals. But when I went back to the rheumatologist after that test and continued to describe my issue with my hands further, I feel like he got closer to understanding it – suggesting that is more of a central nerve concern than a peripheral nerve issue.
Whatever the issue, it continues and it’s highly irritating, not to mention scary and (depending on the severity of it at any given time) debilitating.
I had the MRI done of my head two days after Christmas. They saw a few FLAIR hyperintensities, but when I went to the neurologist she looked at them (I got to see pictures of my brain!) and said they were probably just normal and not causing my issues – they’re not in the parts of the brain that would cause these issues and they’re small (we can all get them from injuries or just the aging process).
She did, however, note that I am weak. She commented that I have far more weakness in my major muscles than I should for my age. Now I’ve never been a strong person – I tend to take a more supervisory position when heavy lifting is required – but I was able to function. I helped build a patio with 50 pound cement pavers this past August/September – carrying them from one side of my yard to the patio location, placing, picking up and replacing them to get them level and lined up correctly. So, no, I’m not in peak physical shape by any means, but I could function.
But now I have a really hard time opening the Gatorade bottles for the girls a the dance studio – way harder than it should be. I get half-way up the stairs to my office at work (2 flights) and I feel like I can’t lift my legs up to continue – my quads feel unbelievably weak. This morning I was walking to my office from the parking lot (to be fair to myself, it’s a freaking half a mile and it is uphill – no kidding, it really is, I’ve measured it and part of the hill is fairly steep! When classes are in session I have to park at a parking lot that is half a mile from my office building because everything else is full by the time I can get here after seeing my kids off to school and driving the hour to campus) and about half-way there I had to cross a street and step up on a curb to keep going. Not a huge step, mind you, a normal, 6-inch tall curb. After walking about 1/4 mile, I struggled to step up that 6-inch curb. My quad was weak lifting my leg to step on it and was also weak pushing myself up to get the other leg up, too. I wasn’t falling down or crawling or anything, but just the fact that stepping up on a 6-inch curb produces enough noticeably muscle weakness that I paused for a second and registered it is not normal.
I’m only 36. I climb stairs in my house (1/2 flight from main level down to living room and another 1/2 flight from living room down to finished basement). But I don’t usually do it after walking 1/4 mile. It’s usually just a few steps from one room to the stairs to another room. So apparently my muscle weakness gets worse with even a small amount of exercise.
I’ve been walking on the treadmill a few days a week since we got it for Christmas – and I can walk a mile and a half while watching a TV show, so I know it’s not that I’m so sedentary that I can’t walk from the parking lot. But I always do the treadmill flat. I’ve never tried to walk for a while and then use my quads to go up steps right after.
Something is definitely going on with my muscles and it’s getting noticeably worse in the last 4 months or so and I don’t like it.
Back to the neurologist. She ordered an MRI of the cervical spine (7:30am on Feb 14th…happy Valentine’s day to me!), some blood work that hadn’t been done (after she checked my online records of blood work done since October) and scheduled me to come back in 2 months.
Why is everything in 2 months with doctors? That’s the most common length of time I’m asked to come back in. In the meantime I’m sitting here for those two months – with fatigue, pain, dry eyes and mouth, fine motor control issues, muscle weakness and worrying about what’s going on with me, if they’ll ever truly pin it all down (since they still don’t seem to be confident in much) and if any treatment will work (since nothing has so far).
In the meantime I go back to my Rheumatologist on Feb 20th (which will be 2 months after the last time I saw him…see!) We’re supposed to FINALLY try my first treatment since switching to KU Med in October of 2013 – he’s said he’ll start me on Rituxan (an infusion drug) if there was no infection or other issue that would complicate it causing the neurological/muscle issues (which is why he sent me to the neurologist – to rule out that stuff). However, after he orders the treatment on Feb 20th (if he indeed does and doesn’t think of another test or specialist I need to see and then send me away to come back in another 2 months), then we’ll have to go through the hoops with my insurance company to approve the treatment and who knows how long that will take!
I was lying here in bed today and thinking about whether I will be able to walk when I get up, or walk down the stairs tomorrow to get to my car to go to the Dr’s office. I also, like you, have muscle weakness in legs, arms, neck, and arms, and I have Sjogrens. I am older than you, but until 12/2015, I could at least walk up a hill and walk up stairs. I am trying to see my 6th neurologist to determine what is going on, to determine what has caused such a rapid decline in muscle weakness. No one seems to know, but they do not hesitate to speculate , and I have so many diagnoses I should hold the record for the most number of neurological conditions diagnosed as one person having, simultaneously. I am going crazy! Everytime I see a new doctor, they are confused, and just look at me and they cannot believe it. It is as if they are wondering what they are going to do with the thing sitting in front of them. However, To the point of my message, I was crying and googleing (sp) today muscle weakness, and I started to read your blog, and my crying turned to laughing and crying, and then laughing! You made my day. No one seems to understand how difficult it is have your health decline so rapidly. I think that you do, and I believe that we have some of the same symptoms. Over Christmas, I was helping a friend decorate for a Christmas Party, where her daughter takes horse riding lessons, and after decorating I could not lift my legs to make the next step. It was maybe 6 inches high. I could not believe it, and of course, I would never tell anyone, I want to be my old self. Active and normal. So, I will be a regular follower of your blog, and at some point, maybe we could talk. I have read about the neurological manifestations of Sjogrens, but not much research has been done, thus far. Has anyone mentioned that your symptoms may be caused by Sjogrens. I have not read all of your blogs, but I plan to read , and get a copy of your book. Thanks