Well guys had my neurologist visit. He swore up and down it was Vascular Circulatory Disease so sent me to have a vascular study done. Surprise, surprise it came back normal. No other lab tests, procedures were ordered. So I am to call him today and find out what the heck.... He totally ignored the original tentative diagnosis of CIDP provided by my spine specialist, which really irritates me. I will mention it today when talking to him. My other great frustration is I have nothing to take except Tylenol so am back struggling with the pain symptoms. I have the Nerve Support formula but only 1 days worth of Neurontin left. Going to be a quiet weekend at my home. Am so glad this group is here for me to "dump" my frustrations on. Will share as I know more.
:-) trying to stay positive but it is a great challenge
Learned that information from the visit with the physician who diagnoised the CIDP NEVER arrived at the neurologist office. Why does this have to be so complicated and frustrating?
Sorry for the runaround, Anne. Soldier on, and I hope things will be straightened out soon. I hope the weekend isn't too bad. Perhaps ask some of our members for tips on how they cope when pain meds aren't available?
Dancermom thank you so much!
I am scheduled for an EMG on Monday February 16. It is still a ways out but at least maybe we will make some progress. I am using a nerve support formula someone else suggested and my Tylenol for now. Have had a lot of muscle pain in my legs and hips in addition to numbness and tingling in my legs but am hanging in there.
In addition to the medical frustrations I have been informed my job is under serious review so am gearing up to look for a different job closer to family as my father lives 8-9 hours away and my brother's family is over 24 hours away. Struggling to know if I should begin applications now or wait until after the EMG. .
Wow DazedandConfused thank you so much!! It was chocked full of good information. First I will try the Gatorade and hope to get a prescription for something following my appointment Monday with the neurologist and to resume my intake of the Nerve Support product recommended by another member of this Forum! It helped me out with the Neurontin.
Since I last saw him the pain has become more intense; a lot of muscle cramping in the affected leg and a new sensation of someone/something squeezing my hips as tight as they possibly can. More days than not it feels like I am walking through waist high water.
I appreciate the information about Tylenol but because of an adverse reaction to NSAIDS during a previous use my allergist has told me it would be in my best interest to avoid use of all Ibuprofen and NSAID products :-(.
I am not certain this individual is a neurophysiologist but am sure there are others in Nebraska and will keep your suggestions in mind. :-)
The 'job review' is not because I have missed work, that is one thing through this all I have not missed a day of work. I guess I am lucky I have a job where I can sit if needed. In a larger facility there might be more standing than I currently do but so far I have managed; but lately feel that standing and walking are greatly overrated :-) . My boss feels that the position has not turned into what she thinks a dietitian should be doing in this community. I have bit the bullet and even though I know nothing begun applying for positions in communities closer to my brother and his family.
When my GP last drew blood my B12 was normal but on the lower end. She did a BMP which was also normal, but no other labs. I take a daily B complex vitamin and do try to eat healthy; my downfall is sweets; but have lost weight (~10 pounds) since seeing the spine specialist who diagnosed me in October/November. I am concerned it is muscle because my activity has not increased; its in fact decreased and do not feel I have reduced my intake a lot since then.
Will share results as I learn them and last but not least thank you for the wake up call that God answers prayers. There are days I get so wrapped up in how awful I feel that I start thinking He has abandoned me when I know that is not the case.