Achilles2323 Posted February 14, 2013 Report Share Posted February 14, 2013 i am going to finally see a rheumatologist in nyc tomorrow i was wondering what i should ask to test for?here is some info -Leg and arms are weak more so the legs. -Shortness of breath cold feeling while breathing in / a lot of the time at night -chest pains / stabbing and squeezing pains -Lightheaded even after getting heart rate under control with meds / blood pressure to low at times due to meds / POTS-fatigue in general -muscle spasms and twitches ---Night Sweats / Waking me -Neck tightness -Memory Loss "Short term" -low grade fever for over 2 weeks 98.7 - 100.4 - normally 97.4-98.5 mostly at night-numbness tingle in legs and right harm / hand - random times-loss of weight 20 pounds in 4 months without any change in diet or exercise-feeling off balance at times. -blood pressure to low at times due to meds / POTS?????-Excessive chills when everyone else is fine.--------------------------------------------------------------------------------------------POTS / Postural orthostatic tachycardia syndrome ---- HOSPITAL DIAGNOSED GS / Gilbert's syndrome - FAMILY DOCTOR DIAGNOSED GERD / Gastroesophageal reflux disease - ENT DIAGNOSED MONO / Mononucleosis - past infection ---- HAD IT WHEN I WAS 12Hypertension / Hypotension before pots hyper after pots and med hypo TakingMidodrine 2.5mg 2xdayAtenelol 12.5mg 1xdayDoxazosin 0.5mg 1xdayKlonopin 0.25 2xday i must add i have see cardio / neuro / inf disease and ent so far thats how i found out all these things diagnosed with POTS in the hospital a month ago or so Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 14, 2013 Report Share Posted February 14, 2013 Polymyositis would be on my list with the weight loss and weakness in arms and legs. Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted February 14, 2013 Author Report Share Posted February 14, 2013 ok i will look into itthank you so much Quote Link to comment Share on other sites More sharing options...
arizona girl Posted February 14, 2013 Report Share Posted February 14, 2013 Hi, did rich pm you? Right after your post last week he posted about the NY doctor he is seeing. I was hoping you could try and get in with his doctor. I was actually diagnosed by a fellow neurologist to rich's. My doc is Levine in arizona. Info below from Rich's post.I agree with Katy, your symptoms could be rheumy, but they also sound neuromuscular. Many of the symptoms you've listed I also have. I don't have the chest tightness but it is one of Rich's most bothersome. He is now making head way. Also with the infection issues. Try and get someone to do your "total Quantitative immunoglobulins", a sub igg panel, ige, and igd. Then a vaccine challenge if any of those come back low. Primaryimmune.org is a good resource. I have both autoimmune and immune deficiency.Rich got pots"Posted 05 February 2013 - 07:08 PMJust got the results of my skin biopsies. I had very abnormal results and have small fiber neuropathy. I'm very excited about it, because I'm hoping it will lead to a cause of my POTS, which I think is autoimmune. The lab that analyzes the test is https://www.therapath.com/They also do testing for mito. Too I think since they do muscle biospy labs..I don't know the details of the results yet. Like what % of nerves are missing. They are sending for bloodwork and they want to send me for autonomic testing at a local hospital, even though the dr knows ai already had 2 TTT, so I'l find out all the detail tomorrow when I call the nurse who is arranging everything" Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted February 15, 2013 Author Report Share Posted February 15, 2013 thank you for all the helprite know i have a appointment in 2 weeks with Dr Wiemer Quote Link to comment Share on other sites More sharing options...
arizona girl Posted February 15, 2013 Report Share Posted February 15, 2013 I don't know Rich's doctor's name, but if you click on the link in the post I made above to therapath, they have a physicians list at the top of the page and other good info about neuropathy and biopsies. My neuro is listed there. PM Rich for his docs name. You and he would be a good local support for each other. It has taken him a while to get to where he is, hopefully you can benefit, from him going before you.When you see a rheumy they have a few autoimmune disease they look at, a general autoimmune panel should catch the most common ones. Like lupus, sjogrens, schleroderma, arthrities, etc. They won't commonly run immune panels on you, like the "total quant", but you could ask.They however only treat rheumatic oriented autoimmune disease. Being ruled out there does not rule out an autoimmune disease in another specialty. I for example have autoimmune diseases that are treated by a rheumy, a neuro, an endo and a gyn.I agree with Kathy something like polymys and poly neuropaths may be a direction you should look to. The good news is if you go to Rich's doc he will test you for those things, as my neuro here in az did. These neuro's are a subspecialty of neurology and specialize in neuromuscular autoimmune diseases. A reg neuro won't do any of that.Good luck tommorrow and don't get defeated if things don't go as you hope, hopefully it will. Just know if you don't give up until you know they have it right, you will eventually figure it out. Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted February 15, 2013 Author Report Share Posted February 15, 2013 https://www.therapath.com/ that link ? Quote Link to comment Share on other sites More sharing options...
arizona girl Posted February 15, 2013 Report Share Posted February 15, 2013 yup! Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted February 15, 2013 Author Report Share Posted February 15, 2013 https://www.therapath.com/Medical_Team.php from that list? Quote Link to comment Share on other sites More sharing options...
arizona girl Posted February 15, 2013 Report Share Posted February 15, 2013 Sorry, my bad! It's The neuropathy association go to neuropathy.org, then click on the pn centers tab/link. You can also go to rich's posts on this he has it listed there too as well, I just got them mixed up. His link is working don't know if I did it right. Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted February 15, 2013 Author Report Share Posted February 15, 2013 i cant get on richs link =/ Quote Link to comment Share on other sites More sharing options...
arizona girl Posted February 15, 2013 Report Share Posted February 15, 2013 A little training on how to use the forum. So you can find stuff easier. You can click on any member's name in a post and it will take you to their member page, on the left it lists "topics" and Posts". Click on either of those and you will be able to read what that member has posted to the forum. Also at the top of the forum is a link that says members. You can find members that way too if you know their forum name.It would be good for you to read what Rich has posted. Also his link to neuropathy.org is in one of his posts. Man don't make me do all the work for you, when you can also just google or type it and get to their website yourself, you don't need to have a link in a post to find them. Most of us do our own research this way.I'm happy to help, but this stuff is easy for you to do as well. Quote Link to comment Share on other sites More sharing options...
badhbt Posted February 15, 2013 Report Share Posted February 15, 2013 What tests have you had? Any MRI or Xray? Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.