Follow up visit- differential diagnosis

[Audrey_M]

I had my follow up visit with the new neuro today, after a massive panel of blood tests, LP, MRIs of the C and T spine and a visual field test.

Before I get into the meat of this, for all of you in Limbo Land, I hope this post is one that helps you to keep an open mind in terms of possible dx.

Her preliminary diagnosis is that many of my neurological symptoms are caused by degenerative disc disease and she is especially concerned about the nerve impingement and spinal cord compression in my C spine. I also have disc problems in the lumbar spine as well as a cyst in the T spine. I canot remember if she said whether there was any nerve impingement from the meningeal cyst (doubtfu, given the role of the nerve functions of the T spine).

If you‘d like to know how the visit went, I’d be happy to share.

I had copies of all the test results and summarized them before my appointment. I listed off abnormal results and possible problematic results for the blood and CSF results and put next to them what conditions are typically associated with those results. Next I listed findings and ambiguities with the radiologist’s report. Lastly, I listed off questions from my first visit and the test results.

I let her talk first. She told me all the blood work and CSF test results came back fine. We then went over my observations of test results and questions, which she answered in a way that I really appreciated. She was able to explain contradictory results and symptoms and never took a defensive posture towards any question. She was enlightening in her responses and seemed to appreciate my preparedness and questions. She was also very personable, and yes, humorous!

At this point, no test results are suggestive of MS or Sarcoidosis. She feels that the panel of tests ordered are sufficient to rule out Lyme Disease, (I live in East Lyme, basically where Lyme Disease was first identified and my son has had it 4 times), yet she was still willing to refer me to an infectious disease specialist if I was not comfortable with her ruling out Lyme. After listening to her and the multitude of tests that she ordered, along with my knowledge of Lyme and having been on several courses of antibiotics in the past 3 years without any Herx, I tended to agree with her.

One of my major issues is balance problems, which is accompanied by lightheadedness, vision problems and nausea. Spinal cord compression or nerve impingement can cause balance problems and the balance system is complex, so that dysfunction in one area can cause problems in other areas.

As far as the brain lesions are concerned, in my initial visit, she said that they are not typical of MS. I asked for clarification today. She told me that my lesions are ellipsoid which is not typical for MS. Also, the lesions are not in areas typical of MS and tend to be more punctuate in nature. Still digesting this one, as first MRI said most lesions are from a few mm up to 7 mm. She also explained that with my erratic blood pressure, Favor V Leiden mutation and being a smoker could all contribute to ischemic changes in white matter. This could explain some of the other symtom I experience.

She is scheduling me for a follow up MRI of the C spine in three months. We are looking for a facility that has a 2T machine; I would have to go to New York or Boston for a 3T resolution machine.

This is my third round of trying to find out what has been going on with my body. So far, I feel that I am in good hands.

I'm nearing 8 years of problems and many rounds of doctors. For all of you still searching, take a break when you need it and when you start up again, keep an open mind and tey to find somebody really good. At the present time, I do feel that I am with someone who will work with me, just as I will with her.

Audrey

[siv1]

Hi,
Hope you find an answer soon. it is nice to have a DR that listen to patient, especially when you are the one paying. I was lucky one to find a MS specialized neuro, I went to spinel clicnic and spine specialist told me hope you feel well in 6 months ( that was a month ago)  and a family DR that won't accept i don't know answer. I've been through alot of blood tests you've described except CSF. Brian MRI put me here and finally a relieve to know i have name for the symptoms after almost 6 months also happy to know i am not crazy. :)  I do have a cyst bet c5 - c6, but cancelled my followup MRI. I've DD too all those are minor compared to the symptoms.  

[rendean]

Audrey,

It sounds like you have found a great neuro and that you two have established a great rapport.

It's great that she answers all of your questions and continues to try a definitive answer for you.

Thanks for sharing!

Ren

[tonyad]

   Sounds like you are very happy w/ your visit today :)  That is always nice to here for a change. usually it is the opposite..Lol

   I personally want to Thank You for this post to help those that are in Limbo Land, to either take a break if needed, or to possibly look at other mimics as all the sx one is feeling is not always MS..

    Now let me clarify myself....I DO think that everyone knows their body better than anyone and what is and what is not normal for them and what is not! With that being said, one should seek medical advice for evaluations on this matter. And make sure that they get answers that are Intelligent, and a Doctor who is one that is truly Listening and concerened w/ their patient!

     So again, Thank you for this Post. I hope it will help othersto push (if needed) for an answer and that answer may not be what they Expect it to be......Hope I am making some kind of sense :0...Lol

Take Care,
~Tonya