I'm late to the game, and you have gotten some wonderful direction. Do you have a pain chart? I used to have one posted on the Trigeminal Neuralgia site, and it was very helpful. I am just so sorry that you are struggling with this. I wish I could offer something more helpful, but I think the advice you have already received is very good.
I have lupus, which is largely in remission.I have bad migraines and take Topamax daily and Imitrex as needed. I have SS, which is seen through Bloodwork and symptoms. I have ATN. I have had very low platelets in the past, but right now, thank goodness, they are moderately abnormal.I have frequent infections of late. And I get bladder infections that lead to freakish pelvic pain for weeks. Dx Atypical pelvic floor dysfunction. I have other odd and paintul things too.But oddly, when I had my mRIsfor the ATN, they saw white spots all over my brain. Neuro was confident it wasn’t MS. No explanation provided. What the …might this be? might it be related to MS??? Or SS?
PS I take lots of vitamins, particularly D3 and B12. I only take a moderate amount of fish oil due to my low platelets. My energy is decent on low pain days which is a miracle I attribute to the vitamins and pushing myself to think positive. But I am concerned about the white spots!
I’m out of town again (doing all the stuff to prevent a sinus infection you guys told me about) as well as rattling beads, knocking on wood etc. LOL!
So, I don’t have the report on the white spots.
I’ve been to the EnT many times, he is a $/(&@. His groups as well as the neuro are part of a humongous group. Once you go to one doctor, you can’t change. I kid you NOT. It is like the mafia. My neuro is good. But the ENT is closed minded, it is unlikely I could get that test…would likely have to leave my city. It is unreal.
I did have nerve conduction text (oh, what fun) and it was fine. I had a CT of sinuses and my MRI covered some of the ear area. When I get home, I’ll print out your response, KAZ. Maybe talk to my new GP who went to Harvard and is super smart. They insisted it wasn’t MS and no one mentioned LUPUs, which by and large is I. Remission. After the dental accident, my blood pressure went out of control for about nine months. It is ok now. Good info.
The report states that the white spots are of unknown origin. I see a separate holistic neuro, who is a very independent guy and seems to be I liked by the rest of the community,
For my migraines and he says they are likely related to my migraines…but we had very little discussion about it. I’m going to ask the GP and the other neuro again. Have mixed feelings about rheumie, thank you.
BTW, typo above. The other neuro I see sometimes for my migraines who is independent and into holistic medicine is UNliked by most, if not ALL of my other doctors.
It is like that here, in many ways. I have a good general doctor, decent Neuro and Rheum, but the ENT was a horrid man. I DID change, but once you establish a long time with a doctor, or even a short time with some, and you go to get a new doctor, they call your old one. If you are too much trouble (i.e. too complicated), they refuse you. My son and I have both experienced this. I am not a problem patient in the sense that I do not follow directions or am rude, but my medical history and needs involve more than one thing. It is so aggravating.
Nomad said:
I'm out of town again (doing all the stuff to prevent a sinus infection you guys told me about) as well as rattling beads, knocking on wood etc. LOL!
So, I don't have the report on the white spots.
I've been to the EnT many times, he is a $/(&@. His groups as well as the neuro are part of a humongous group. Once you go to one doctor, you can't change. I kid you NOT. It is like the mafia. My neuro is good. But the ENT is closed minded, it is unlikely I could get that test...would likely have to leave my city. It is unreal.
I did have nerve conduction text (oh, what fun) and it was fine. I had a CT of sinuses and my MRI covered some of the ear area. When I get home, I'll print out your response, KAZ. Maybe talk to my new GP who went to Harvard and is super smart. They insisted it wasn't MS and no one mentioned LUPUs, which by and large is I. Remission. After the dental accident, my blood pressure went out of control for about nine months. It is ok now. Good info.
The report states that the white spots are of unknown origin. I see a separate holistic neuro, who is a very independent guy and seems to be I liked by the rest of the community,
For my migraines and he says they are likely related to my migraines...but we had very little discussion about it. I'm going to ask the GP and the other neuro again. Have mixed feelings about rheumie, thank you.
Thanks, I bookmarked it, and I sent a copy of the link to my son. Unfortunately, he did not just inherit my long eyelashes.
Kaz said:
Of course, anything holistic is usually looked down the nose on by medical professionals. ;-)
Thought I'd give you some info on migraines as diet helps but this site has good tips.
http://www.migrainetrust.org/factsheet-migraine-triggers-10505
I have also uploaded a file and within this there is recommendation for a book which is very good and quite cheap. It has a diet in it that has helped a lot of people.
Kaz, what does this test do? I have to go get my hearing checked, but I have not wanted to because of my TN.
Interesting. Thanks for the explanation. I figure most of my problem is just age, but it is a good thing to get it done every so many years. Headsets hurt, so I don't like to wear them, but I could probably manage a one time deal.