FAQ/Help |
Calendar |
Search |
Today's Posts |
|
Autoimmune Diseases For Hashimoto’s thyroiditis (underactive thyroid), Graves’ disease (overactive thyroid), Lupus, Crohn's disease, all types of arthritis, and all other autoimmune diseases. [Multiple sclerosis (MS) and Myasthenia Gravis (MG) have their own forums below.] |
Reply |
|
Thread Tools | Display Modes |
|
07-07-2020, 10:58 AM | #1 | ||
|
|||
New Member
|
Congratulations, Iglascoe! May I please ask, who is your neurologist?
I have this diagnosis as a severe case unresponsive to opioids (other than one that I cannot tolerate because it causes severe systemic edema) along with autonomic symptoms and two positive biopsies showing rapid atrophy of my IENFD in the lower dermis. Two Neuro-muscular specialists have written in my chart that I should receive IVIg, but neither is willing to write the script and deal with the scourge of our insurance system. I have little bodily function and spend most of the day wearing a diaper, curled in a fetal position crying. I am hopeless, but I know that if I could just access treatment, I have a high chance of enough amelioration to have a meaningful quality of life and a future, a return to my career and a relationship. I am fairly young and have a college degree and have lived and worked in France and started teaching myself Italian, and now, after subacute onset at 31 and rapid decline... I am a mere shade of the man I was. Any direction would be appreciated. Some doctor has to have compassion and look at the science and realize the risks are lower of attempting IVIg than fentanyl for decades and this condition with my autonomic system and sensory nerves. Heavy steroids could tell us something too, but that is risky business in our COVID world, and I feel IVIg would be safer despite the price’s being inflated due to greed. Grateful for any leads! -Aaron |
||
Reply With Quote |
08-16-2020, 09:28 AM | #2 | ||
|
|||
Newly Joined
|
Hi Aaron,
So I finally started IVIG in February. It is now August and I am doing horribly. I since have gotten a diagnosis of Hashimoto's. My nails are all white and painful, sometimes they turn blue. My feet are excruciating and I cannot lie or walk without extreme pain. I have trouble breathing all the time. After an iron infusion my nails turned turquoise. My heme is a moron and says "I don't know why" but that I should get another infusion. I won't do that. I cannot tolerate heat, cold, sun, standing, or lying down. I am just in pain all the time. And the horrible pain people at Stanford will give me Tylenol and say something like "you need to get back to your life and stop being so depressed" I was on steroids and azathioprine in December and my Liver enzymes went up and now I have horrible abdominal pain in my RUQ and LUQ. Liver enzymes still have not normalized. I lost 20 lbs in a month. because I was so nauseated and had extreme pain. (In the fall Had a Hida Scan for my GB and after had a horrible attack and then had this dry skin for months which culminated in this crackling rash on my legs and neck this year). I had three cracked teeth and finally the fourth dentist I saw diagnosed a tooth infection in March. Then I had a liver biopsy which was mostly uninformative, some small beginnings of nothing they could define well. So I will probably have to do that again. While not relevant to you, I had my menses for 60 days straight, and now I barely have it at all. My lymph nodes in my pelvis are swollen and I have a swollen bump on my left buttock I think from the pressure on the dilated vein in my pelvis (I have pelvic congestion syndrome and nutcracker syndrome). My gastro is making me do the breath test AGAIN and the smart pill. Luckily I took about 800mg of aspirin last week and quite a bit of the pain in my gut disappeared. I have asked about all sorts of clotting disorders because of my C3 C4 and ANA, but I basically get ignored. I am being referred to a specialist for Mastocytosis, but that is unlikely. Like you, I lie around most of the day and my gut is just a mess. I used to be so active. One thing I have finally done is completely cut out any and all fat in my diet (besides all the other typical stuff) and I no longer eat protein from animals. Going vegan with zero/very low fat has helped me at least gain some weight back. But I had tried every stupid autoimmune high fat diet before and only ever got sicker. Right now the burning in my toes and legs is horrific. I can barely walk and my skin is dry and my legs ache all the time. Covid is the only reason I am keeping my job as I can do it from my bed, otherwise I would be applying for disability....which is really depressing because we will likely have to sell our house because it does not pay enough for us to afford to live (California is extremely expensive). I am the breadwinner in our home so it will be a massive blow. |
||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
Axonal sensory | Peripheral Neuropathy | |||
Very mild axonal sensory | Peripheral Neuropathy | |||
axonal sensory polyneuropathy | New Member Introductions | |||
Sensory Axonal Neuropathy | Peripheral Neuropathy | |||
Axonal Sensory Motor Polyneuropathy - ? | Peripheral Neuropathy |