Holding Pattern

I am currently sitting in a quiet corner at Mayo Clinic, which is a hard thing to find around here, looking out the windows, watching the world go by. We just finished a late lunch, after I had been fasting for a test all day, and I am now enjoying my first cup of coffee for the day at 2 pm. Since my last post, it has been a whirlwind of tests and appointments. I still have a bit of a spinal headache and low back pain from yesterday's spinal tap, mixed with this mornings test that was uncomfortable, then the fasting before another hour and a half in an MRI tube (third time in an MRI machine since last Thursday), all tipped the scales this morning for the inevitable meltdown. This trip has been exhausting, both physically and emotionally, and stressful, both mentally and financially. I finally needed to go into a bathroom and have a good cry.

First, can I just say how truly thankful I am for all the texts, and emails, and FB messages/comments sending encouragement and letting me know you are praying. It has been a real blessing to know that others are thinking of me and praying for me, even when I have been at the end of my rope, too tired to offer up a prayer of my own beyond crying, "Lord, help me." So thank you all!

Next, I just want to say, if it has ever been suggested that you should come to Mayo Clinic for any medical issue you are dealing with, DO IT! I was not completely sold on the idea. I worried it would just be an expensive waste of time. While it hasn't been cheap, it was a great decision to come. They run this place with more precision than the military, more compassion and friendliness than any local hospital, and seem eager to learn from any mistakes. We only had one issue, which lead to the 3rd trip to the MRI tube, and it got the Neurology, Radiology, and Patient Experience teams, along with the chairs of both departments, to communicate what the issue was, why it went wrong, how to fix it. Then they informed us of the loop hole they found in a new computer system that caused the miscommunication. They are working to fix it, and plan to follow up with us in a couple weeks to let us know what solution was implemented to make sure it doesn't happen again. WOW!

Also, if you stop moving anywhere for more than a brief minute, a volunteer or passing staff member is sure to inquire if you are lost and need directions. It really has been remarkable! Like 5-star hotel service, but in a medical setting. There is NO gap in medical records communication either. Their portal (or app) gives you complete access to tests results, reports, doctor notes, and everything in between, in a very short time. I had some of the spinal tap lab results available in my portal before I even was allowed to get up off the table!

Now, I will give you the easy version of where we stand right now (I will finish up today with the detailed medical version in the next section). If you read the last post, you know we got some difficult news to process. While I have undergone several more tests, and officially had my consultation in the office with Dr Dyck, we haven't found out much more in terms of definitive diagnosis, as they are awaiting the pathology slides from Northwestern Hospital. That can take a few weeks, so we are in a holding pattern. They really want to see those slides, and possibly do their own biopsy, before officially confirming the diagnosis. After those last few steps, they will give me the prognosis for my case, since this disease can vary in degree of severeness.

So, CIDP (Chronic Inflammatory Demyelinating Polyradiculoneuropathy) has a close sibling. They are in the same family, share many of the same physical traits, and mannerisms, but like any family member, there are many differences in personality traits. That is the best way I can describe the alternative diagnosis of CISP (Chronic Inflammatory Sensory Polyradiculopathy) They are so similar, they are hard for us to even tell apart, like identical twins. The doctors, like the parents of twins, seem to clearly see the differences, while we see identical ones. In the end, it doesn't really matter, since they are treated in the same manner, and the doctor says I either have a non-pure form of CISP or a non-pure form of CIDP, the biopsy should push them over the edge towards one or the other. Which leads to our return visit in the middle of September, when it is likely they will do a biopsy, and we will go home with the final verdict, and treatment plan. In the meantime, I appreciate your continued prayers for strength and wisdom.

As for the rheumatological and chronic pain issues, the rheumatologist does agree that I am in remission from whatever diagnosis I had back in 1998. I have been off all of those meds since around 2009, and was feeling pretty good for a couple years. I do have constant neck and back pain, and testing shows worsening of the degenerative disc disease. She did say that it was a early onset, since this much degeneration is something normally seen in older patients. Our daughter was diagnosed with it at age 17. There is a genetic predisposition in some people, making them more prone to an early onset form, and it can become debilitating. Additionally, the change in my walking gait since the "tumor" surgery is contributing to my pain and worsening degeneration. I was referred to a specialist, but that appointment will also have to wait for our return trip. I just wanna go home (and we will soon do just that!). My general neurologist, Dr Boes (pronounced "base") added me to the end of his day at 5:30. He will have the MRI reports and scans that I had this morning by then, and be able to give us the final game plan, and answer remaining questions. We will be sleeping in our own bed tonight, although it may be after midnight by the time we get there! I am still excited to be heading home! Yay!

For all the medical nerds like me who are reading, I can give you a few more details:  😃

• MRI's all showed my peripheral nerves and nerve roots are inflamed, particularly at L2-3, L3-4. This inflammation was seen on the original 2009 MRI at Northwestern which the report labeled as a likely nerve sheath tumor, but also said they could not rule out an inflammatory neuropathy (oh, how I wish I knew this then). The inflammation has returned to the remaining sections of the left femoral nerve, and worsened in other nerves. As a very cool side note, the portal/Mayo app includes the actual images of the MRI scans! That is way better than asking for a disc to take home and look at!
• The EMG was abnormal, indicating both the demyelination of nerves in upper and lower extremities, and confirming that this is not purely sensory, but also a motor neuropathy. That being said, CISP normally has a mostly sensory presentation, and normal EMGs, where CIDP presents with mostly motor involvement, less sensory, but EMGs that look like mine.
• Spinal tap showed elevated protein and albumin but lower IgG levels. Elevated protein is common in CIDP, but usually at a very elevated rate above 200. Mine is 69, normal is 0-35. Labs were mostly normal, which is good since a lot of them were for other diagnoses like: POEMS syndrome, pernicious anemia, and neoplastic disease. A few of the numbers were slightly off, but nothing of consequence.
• Somatosensory Evoked Potential and Quantitative Sensory testing were both abnormal, but apparently in an expected way for either CIDP or CISP. They again show upper extremity involvement.
• Still awaiting brain MRI results, and did not have the neuro-ophthalmologist appointment yet. This is more precautionary than anything, I think, because of the mild optic neuritis I had a couple months ago. We will have this last MRI result at our 5:30 appointment today, and the eye exam at the follow up trip in September. 

That about sums it up for now! I really am sorry for all the super long posts lately. You people rock! I know many of you have read every word, and I am impressed with your persistence.

We will be coming back to Mayo. We are fairly certain there will not be multiple return trips, but then again I came here with hotel reservations in NY, thinking we would only be here a few days (those darn expectations). Of course, I also thought I had a tumor AND a neurological disorder, and am leaving here with doctors 99% convinced that I have had a neurological disease since 2004 when symptoms first started, and no tumor ever, so things do change. I am leaving here with no spoons, and a lot of emotions to work through, but I am leaving here encouraged by family and friends. I am thankful for a husband who loves me, and is the strongest person I know. He masterfully pushes my wheelchair through a crowd, while pulling a suitcase, and does it (mostly) without complaint.  I am so thankful for my loving Savior who strengthens me when I am at my weakest, who uses me in waiting rooms, and who lovingly and graciously keeps a smile on my face through the dark of valleys. Praise be to God!

Until Next Time~

Shari


P.S. I forgot to mention that I got to take a Tesla for a spin. The T3 Tesla MRI machine, to be exact :) Supposedly stronger magnets for better imaging.