Guest guest Posted December 2, 2007 Report Share Posted December 2, 2007 Hugs Hugs and more Hugs. Totally understand where you are coming from. I hit that point a while back. Go home and live best you can. There is nothing more to do, and no one else to see. Soooo sad. Don't have any advice. I go from being totally depressed about it to wanting to go beat up the people that are suppose to be finding cures. Hang in there and do the best you can. More hugs! Vickie " J. Catchpole " wrote: Thanks all for good wishes, I’m sad to say (and totally frustrated and furious and scared) that the neuro was a total crap out. He said nothing was wrong with me - except my BP went down 20 points from sitting to standing, my legs were very weak to his testing, and it took 3 seconds for me to find my nose with my finger LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2007 Report Share Posted December 2, 2007 Aylwin, I'm sorry to hear your appointment went badly. I threw a fit at a doctor's office once myself. I wish it actually did some good. Good luck figuring out your next steps. Take care of you. Big gentle huggles, Di in Feasterville-Trevose, PA ) dimntd on AIM, IRC, ICQ & Yahoo! Messenger J. Catchpole wrote: > Thanks all for good wishes, I’m sad to say (and totally frustrated and > furious and scared) that the neuro was a total crap out. He said nothing was > wrong with me - except my BP went down 20 points from sitting to standing, > my legs were very weak to his testing, and it took 3 seconds for me to find > my nose with my finger LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2007 Report Share Posted December 4, 2007 I'm so very sorry for your horrid visit!!! I've only had one experience like that, well two actually! Before being diagnosed with Fibromyalgia, I went to an infectious disease doctor here as they can diagnose the CFS/and other issues. I had abnormal labs at the appointment, yet the doctor didn't bother to try to find the cause. They simply gave me a hug and said " they'd pray for me! " I'm all for praying, and I do it myself, and believe in the power of prayer, but when you have abnormal labs, have someone hug you, say they will pray for you and not reschedule another appointment? UGH!!! Then when my rheumatologist left the hospital, I went to see the doctor the scheduling department arranged for me, and after a three hour drive there, he wasn't EVEN going to see me! He said he had looked over my chart and that I was simply too much paperwork. And how could he get anything done with so much paperwork? My mom was with me, and finally when I told him how badly I was doing, he then decided to do an exam! Complaining all the while mind you, but he did write a really good letter to my family doctor about what he found wrong in the visit. I wrote a letter to the department chief at the hospital and received an apology, and although this doctor was supposed to have an amazing " bedside manner " to his patients, and be one of the best, I never went back!! I hope that they can schedule you with someone who knows what they are doing! Its really frustrating when we are stuck in the hands of someone who doesn't know their head from a hole in the ground!! --- " J. Catchpole " wrote: > Thanks all for good wishes, I’m sad to say (and > totally frustrated and > furious and scared) that the neuro was a total crap > out. He said nothing was > wrong with me - except my BP went down 20 points > from sitting to standing, > my legs were very weak to his testing, and it took 3 > seconds for me to find > my nose with my finger LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2007 Report Share Posted December 5, 2007 Hi Aylwin, I find dealing with doctors to be a disability unto itself. Even those with some real knowledge seem to have their own agenda and they bring their biases into the treatment room. I'm still looking for a new doctor. Going to see my primary physician is torture and leaves me very depressed. Today, Mom is picking up the police report from the car accident it is finally ready. We will be contacting an attorney to find out what options we have. I am also giving Mom my medical power of attorney so she can help with searching for doctors and other medical help. I'm still dealing with the injuries from the accident. I have used of the allotment from Mom's car insurance. I had my physical therapy evaluation Monday the therapist is very cautious about my neck and knows about chiari malformation. My neck is causing some pretty significant nausea which is harder to deal with than some of the pain. I have discovered peppermint for the nausea it has become my new friend. I can no longer take ibuprofen or acetaminophen they cause stomach pain. I told my primary doc she ignored me. I can meditate to keep the pain at a lower level though if the pain is severe I can do nothing else but try and keep it under control. I started a blog/journal thing in October to keep family & friends updated. The link is http://dimntd.livejournal.com/ if you would like to have a look see. Life is fun, fun, fun for now I'm taking thinks minute by minute. Take care of you. Big gentle huggles, Di in Feasterville-Trevose, PA ) dimntd on AIM, IRC, ICQ & Yahoo! Messenger J. Catchpole wrote: > Thanks Di, well the next step is liberating myself from any expectation that > I will get any medical help, and just getting on with things from there. > It's actually quite liberating...no expectations, no exhausting and > expensive trips to useless specialists, no disappointments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2007 Report Share Posted December 5, 2007 Hi Eugene, is 14 and has been housebound over 2yrs with ME. He has complete sleep reversal and suffers from severe chest pain headaches and stumbles about when he tries to walk among all the other aches and pains that go along with ME His concentration and memory is also effected Antoinette PS just got appointment for Jan 16th Eugene Carlson wrote: I went to all three of them in this area.....none of them could find anything wrong. If I may ask what is having problems with. Fir me is is vertigo and I found a real good Ear Nose and Throat doctor that pushed for a diagnosis. --- antoinette christie wrote: > Hi Doesn't give me much hope then I have to take > to see a Neurologist in the next two weeks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2007 Report Share Posted December 5, 2007 Thanks , there is just no one in this part of the world that has a clue…and without a supportive GP to follow up there’s no point. I’ll just keep on keeping on as I have been. I have a good alternative person that has helped me a lot and continues to help me keep at least stable and reduce inflammation etc., not to mention we have reduced my allergic reactivity by about 90%, and basically cured my long standing IBS. Bless her! You TC, Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2007 Report Share Posted December 6, 2007 I am so sorry that that doctor did not want to see you due to paperwork. How ridiculous. I do understand that the extra stuff that is required of docs these days in terms of paperwork and reporting and such can be a full time job on top of seeing patients. But to not want to see someone because of it is truly absurd. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2007 Report Share Posted December 6, 2007 Hi Di, you said it grrl! Have you thought about getting to a pain clinic to have it properly assessed and treated? Yes meditation can help with milder pain, but when it’s really bad I find it doesn’t. Rest at the very moment of exhaustion (before!) helps too…pushing through makes it worse. I think these ignorant, minimizing GP’s do us so much harm. I never go, except to get refills for the 2 scrips I can take. Yes, I did manage to bully him into specialist referrals, but as they were just as ignorant it was no help. Good Luck getting it all sorted out and may your pain vaporize! TC, Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2007 Report Share Posted December 6, 2007 Di, I'm so sorry to hear about he effects of the accident. Try ginger tea or chewing on ginger for the nausea. That helps some folks. I personally don't care for the taste of ginger but there is crystallized ginger sold that is more palatable. There is coated peppermint pills available as well as if you have reflux then peppermint by itself can cause issues. The coating allows the peppermint to travel below the level affected by reflux. This is info my naturopath gave me. Sandrea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2007 Report Share Posted December 6, 2007 Sleep is hard I usually wait until I am so tired I can fall asleep despite the neck pain. Not a good plan I know but for now it the only choice. A pain management center is the next step after finding a decent neurologist. One of the University Hospitals in Philadelphia has both a headache center & pain center I am thinking of going there. Take care of you. Big gentle huggles, Di in Feasterville-Trevose, PA ) dimntd on AIM, IRC, ICQ & Yahoo! Messenger My new blog Dimntd Thoughts http://dimntd.livejournal.com/ J. Catchpole wrote: > Hi Di, you said it grrl! Have you thought about getting to a pain clinic to > have it properly assessed and treated? Yes meditation can help with milder > pain, but when it’s really bad I find it doesn’t. Rest at the very moment > of exhaustion (before!) helps too…pushing through makes it worse. I think > these ignorant, minimizing GP’s do us so much harm. I never go, except to > get refills for the 2 scrips I can take. Yes, I did manage to bully him into > specialist referrals, but as they were just as ignorant it was no help. Good > Luck getting it all sorted out and may your pain vaporize! TC, Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2007 Report Share Posted December 9, 2007 I'm allergic to aspirin so I will stick to peppermint. I only have stomach pain when I take Ibuprofen or tylenol. I use caffeine to try and keep the daily migraines under control. Take care of you. Big gentle huggles, Di in Feasterville-Trevose, PA ) dimntd on AIM, IRC, ICQ & Yahoo! Messenger Eugene Carlson wrote: > Yes peppermint tea does calm your stomach but you need > to make sure that you get decaf. > > Caffein can open up other problems and it is a vaso > constrictor to boot. > > Why do you have stomach pain? Have you been tested > for an ulcer? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 You know Di, that if you are allergic to aspirin then you are also allergic to ibuprofen. But there are some really amazing new migraine meds out there…my daughter has always had migraines that are announced by her throwing up…the doc gave her a drug in a melt-in-your-mouth format…and it totally works for her! Can’t remember the name but you should ask your doc about it. Aylwin xox Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 I take Topomax..have you tried that? There is one my aunt takes that that I believe is Imitrex? Im brain fogged so that one might be wrong:) --- " J. Catchpole " wrote: > You know Di, that if you are allergic to aspirin > then you are also allergic > to ibuprofen. But there are some really amazing new > migraine meds out > there…my daughter has always had migraines that are > announced by her > throwing up… Quote Link to comment Share on other sites More sharing options...
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