Doctors, specialists, ER, IVIG, YIKES. I have had such a nice long period of time I did not have to go for tests all the time, like I was doing for so many years and got spoiled. So now we begin over again for which I hate.
The IVIG this month landed me in the ER. It has been causing me symptoms of breathing difficulties for which the doctor my rheumy gave me something else to take for five days before the treatment and I did. But by the second day of the IVIG I could feel it. I was breathing hard. By the time I got home I felt like I could not breath hardly at all. I was having such a time, I ended up in the er and blood pressure was 203/90, they treated it like I was just anxious, they did take xrays and that is all, no blood work, no nothing no ekg as for I have a horrible family history of heart disease. They were very nice but really? They gave me two adivans and said it was a typical reaction to the ivig. Well if that was the case, I would have been given steroids or Benadryl. So next day my doctor was called and he said same thing if it was a reaction why did they not treat it as such. HUM> Well my rheumy did give me preds before the ivig and it did help. But felt I could not breathe good for three days after. I did a lot of research and I did read that ivig can over load you with fluid, and cause you to be short of breath. So maybe that is it. But decided that I should see a cardio doc with my family history and my autoimmune diseases I felt it was and is a smart move. But oh I hate to start with another Doctor. Hate it.
So then I made an appointment for a neuro for my Hashimoto's Encephalopathy and small fiber neuropathy a new one, in town. My doc that I love is five hours away and when I was in the er last week I thought about this. What would I do if I needed her. I am going to see how this doctor is what he knows about the rare diseases I do have and just maybe if I am lucky he will be willing to work with my doc in Lacrosse so I can have both I know that is a lot to ask for. But I am hoping.
Then I decided I should go to my primary, for the high blood pressure I had in the er, and have her check my thyroid. Well she just did a TSH I don't know why but that is the only one she did, it came back high normal. Mine with HE is around 1.75 and this came back 3.95 well that is to high for me, with hashimoto thyroiditis too and hypothyroidism, and the HE. So I emailed her and suggested that maybe my thyroid meds should be upped and she emailed me back and said she wants to send me to an endo (Another doctor) GEE. I just don't want to start over again when I know a neuro can watch it with the HE I have. My Lacrosse doctor always did the thyroid panels and controlled my thyroid meds for me.
So I feel like here I go again. I don't like starting off the new year this way. lol
We had sad news today also, a member of our Hashimoto's Encephalopathy group young daughter who has HE passed away yesterday with complications of HE. I am just so sad. So sad. It is a crime that the medical world does not have enough information on this rare disease. Autoimmune diseases in general have not enough attention in the medical world, yet affects many people. More then ever before. This family has now lost this beautiful young lady who had a full life ahead of her.
We are working on awareness we are writing another edition of Understanding Hashimoto's Encephalopathy, one step at a time to bring awareness to the public and medical world. We are still looking for stories of people with HE. So if you have HE, and would like to submit your story, please contact me. We would love to have your story.
We also are setting up a face book support group called "Understanding Hashimoto's Encephalopathy support group" This group is set up to help people who maybe looking for answers or needing information. They do not have to be dx with HE. We just want to support anyone who is out there going through the dx hell.
Once again thank you for reading and supporting my posts.
Susie
Tuesday, January 20, 2015
Monday, January 5, 2015
Great article on 10 most painful conditions
Top Painful Medical Conditions
The 10 Most Painful Conditions
Doctors divulge the most excruciating illnesses. Ouch.
After an ER doc determined that a tiny kidney stone caused my husband's sudden agony last year, a nurse came to deliver more pain meds and a dose of sympathy: "I passed a stone a couple of months ago, and it was worse than any of my four labors," she told him. Indeed, when Prevention asked doctors for their opinions about which conditions trigger the most horrific pain, kidney stones made the list. But even they're outranked by several other diagnoses with more intense, longer-lasting distress. Here, from bad to horrible, are the worst of the worst:
10. Post-Surgical Pain
Whether you were in the hospital for work on your shoulder or your ticker, you're at risk for nerve injuries that lead to constant pain. "Some research has shown that half of people who have chest surgery develop chronic pain," says Lynn Webster, MD, past president of the American Society of Pain Medicine. "In the future, we'll be able to identify, through genotyping, who is most at risk." In the meantime, he cautions patients not tough it out in the hospital because managing the acute pain lessens the risk of long-term problems.
9. Kidney Stones
The pain from these itsy bitsy masses (which range in size from a grain of salt to a pearl) comes on fast and furious, with the back, lower abdomen, and groin area being in the greatest discomfort. Most of the time, doctors prescribe pain-killers and advise you to drink plenty of water and wait. Once you pee out the stone, the pain subsidies almost immediately. But don't think you're out of the woods yet: The doctor will probably suggest that you have the stone tested, because, depending on the type, changes in your diet may prevent the whole ordeal from happening again.
8. Chronic Lower-Back Pain
Photo by I Love Images/Getty Images
"Lower back pain is like death and taxes; everybody gets it at some point," says out Sean Mackey, MD, PhD, chief of the division of pain medicine at Stanford University School of Medicine. About 9 in 10 of those patients recover fairly quickly, he says, but for the remainder, the pain becomes chronic and life-altering. "The severity of the original injury and how prone you are to anxiety plays a role in whether your pain will persist," he says. Physical therapy focused on core strengthening is one of the most effective treatments.
7. Peripheral Neuropathy
Commonly caused by diabetes, damage to the tips of the nerves going to the fingers, hands, and toes trigger this pain. "I've been told that it feels like walking on razor blades," says Charles Kim, MD, assistant professor of rehabilitation and anesthesiology at NYU Lagone Medical Center. Anti-seizure medications calm down irritated nerves, but Kim says exercise is also important to improve blood flow.
6. Cancer Pain
Whether it's from the disease itself, treatments like chemo, or a combo of the two, some cancer patients—especially those with advanced disease—suffer immense pain. Among the most agonizing cancers: pancreatic, brain tumors, and sarcomas. Doctors prescribe medications based on the type of pain; for instance, steroids may help pain caused by swelling.
5. Postherpetic Neuralgia
It's the pain that lingers in about 10% of patients who come down with shingles, the mature version of chickenpox. (After you have chickenpox, the virus lies dormant in your brain and spinal cord and may re-activate as shingles as you age.) "When the shingles rash goes away, some patients are left with burning nerve pain that's difficult to treat," says Mackey.
4. Trigeminal Neuralgia
Infections, tumors, and other conditions can trigger this pain in the trigeminal nerve, which carries sensation from your face to your brain. "Patients describe it as feeling their face is on fire," says Kim. The pain tends to be throbbing, and in some cases, occurs every few minutes with the right side of the face most often being affected. One of the go-to treatments: anti-seizure medication.
3. Interstitial Cystitis
It's a fancy way to refer to an inflamed bladder. "Patients tell me that it feels like their pelvic area is burning all the time," says Webster. In extreme cases, sufferers may urinate 60 times a day. Physical therapy, nerve stimulation, and medications, such as anti-inflammatories, help provide relief.
2. Complex Regional Pain Syndrome
Although the name of this condition sounds bogus, the pain is all too real, typically occurring in one of the limbs after trauma or simple injury—even a run-of-the-mill twisted ankle or broken arm. The pain and swelling starts in a small area then spreads throughout the limb, causing it to feel "like a blow torch," in the words of one sufferer. "I saw a patient who came in on winter day with one of his pant legs cut off," says Kim. "Just having the material touch his skin brought about too much pain to bear." Doctors aren't sure why some people develop the condition, though they generally agree there's a genetic component, and more women are affected than men. An intense combo of rehab, medications, and neuro-stimulation helps control the pain.
1. Cluster Headaches
Photo by Dirima/Getty IMages
More debilitating than a migraine, cluster headaches produce sudden, sharp pain that's usually concentrated around one eye or one side of the head, and episodes occur in clusters for weeks or months. "It's nicknamed the suicide headache because patients have suicidal thoughts to get away from the pain," says Mackey. "My patients have told me that it makes them want to bang their heads against a wall or take a drill to their head." While the cause isn't known, steroids, calcium-channel blockers, and anti-seizure medication may bring relief for sufferers, most of whom are men.
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