After visit to Houston COE

September 22, 2011 at 6:38 pm


Thought I would provide an update….To answer the question above re: CSL, the spinal tap (March 22-11) showed within normal range for both the CSL Glucose and CSL protein. Another question ask was about the nerve conduction studies (I have results). I don’t quite understand everything, but both studies conclude: “Abnormal Study” and some key words from the study include: prolonged DML’s, CMAP had slow CV’s, ulnar SNAP not recordable, and the last sentence of the report study said “ Most SNAPs tested had low amplitudes, prolonged PLs and slow CV or a combination of the same.”

As for current prescriptions: I had IVIGs from May to the end of July-stopped, bc didn’t they were working. Started 60mg prednisone in June and 500mg of solumedrol IV in July. Currently week by week reducing both steroids. Should be off by mid October. Also taking Vit B’s & D, Calcium, blood pressure, amitriptyline. I only gained 12 pounds, but can’t shed any!

Lab reports from Clinical labs continue to show elevated Asailo GM1 IGM went to 93, then two weeks later (July) dropped to 76. Also the GM1 IGM moved up to 66 then two weeks later was at 53. The Dr. said the IVIG could affect those numbers, but it was concluded that the prednisone was helping suppress.

I finally made it to the Center of Excellence in Houston at the end of August. They were not sold that I had CIDP. They recommended that I taper off steroids and see what happens. My symptoms remain the same just a bit more intense, right hand extreme pain pinky, ring finger and palm. Pinky is clawing. Let foot tingles, burns, buzzes (worse now than in June). Both forearms and shins often burn, esp. when sleeping. Occasionally get aches in the knees and ankles, but come as quick as they go.

The Houston COE did lots of lab test and sent stuff to Athena labs and I received a call from the Dr. this week. He says blood work shows Monoclonal Gammopathy (IGM Lamdba ISO Type) or MGUS. He said to keep coming off steroids and then if pain progresses, we may need to do a nerve biopsy. Also recommended I see a Hematologist. Their office is mailing me all the lab findings this week.

During the summer, I also saw an rheumatoid arthritis doctor (and other dx), and was tested for diabetes, glucose intolerance, RA and sjogren’s syndrome-all negative (one test was borderline). During these test, it was also discovered that I have dynamic subluxation of the right ulnar nerve and recommend transposition surgery (funny the first symptom started 24 hours after bowling on Jan 27-2011 with the buzzing of my right pinky). The Houston COE said there is a good chance that the surgery will NOT help, so be prepared-but recommends if pain affects quality of life (which hand pain soars after an hour of computer use). My prime Neuro in Richardson, TX wants more information about the surgery and she has to sign off before the Worrell Clinic proceeds. I do want to add that my Dr. in Dallas has been very open to speaking with other doctors including the Houston COE.

Again I hope someone finds this of use and thanks for everybody else for all the various post….My thoughts are with yall!