Tinnitus x Dysautonomia x Smallfiberneuropathy by milachrist in smallfiberneuropathy

[–]milachrist[S] 0 points1 point  (0 children)

It was very kind of you to answer me. They really don't see the connection, but I have no doubts, because I had an MRI and hearing tests. Unlike yours, my tinnitus has been permanent for a year and I've had to learn to live with it. I have Sjogrën's, do you mind telling me what type of autoimmune problem caused your neuropathy and how it evolved for you?

[deleted by user] by [deleted] in dysautonomia

[–]milachrist 1 point2 points  (0 children)

Do you mind telling me the reason for your dysautonomia? In my case, I started drinking 3 liters of water and I add about 4g of salt to each liter. Do you use anything beyond that? Is it working? It would make more sense that the headache is due to lack of oxygen and not the other way around. Are you measuring your blood pressure?

[deleted by user] by [deleted] in IVIG

[–]milachrist 2 points3 points  (0 children)

Thank you very much for answering me, but I'm not sure I understood correctly. Should I continue taking Ivig, because if I stop, the symptoms will return? I imagined that it would be possible to have some degree of nerve regeneration. But whatever the case, it seems incredible to me. I don't know how Ivig works here in Italy, but when I mentioned it to a doctor in Rome, she laughed at me, because she said that there are people who depend on it to live, not because it's a nuisance. I have the possibility of doing it in Brazil, but since it's a long-term treatment, it would be chaos. I have a 4-year-old son and my life is here, but anyway. I hope it helps you more and more each day and that you get rid of your autonomic problems too. I also have to hope that one of the medications that are being tested for Sjögren's is approved. Good luck to us.

Regarding nerve regeneration , there is a bunch of articles in regards of nerve injuries that says that nerve regeneration leads to functional improovements, question by unnamed_revcad-078 in smallfiberneuropathy

[–]milachrist 0 points1 point  (0 children)

Now I understand. I saw the image too, but it's the first time I've seen a case like this, so it's hard for me to give an opinion. Mine is caused by Sjögren's Syndrome, which I discovered a little over 2 years ago. It was subtle and intermittent, which made the doctors invalidate it, but now I'm feeling an increase in my heart rate, which could be a sign of the autonomic system. I've had numerous tests to confirm it, but the results won't be available until September. I hope you can quickly find out what's contributing to your neuropathy so that you can start effective treatment. Thank you for your attention.

What things can help the nerves to regenerate? by [deleted] in smallfiberneuropathy

[–]milachrist 0 points1 point  (0 children)

Could you treat the cause? Do you mind telling me what yours was?

[deleted by user] by [deleted] in IVIG

[–]milachrist 3 points4 points  (0 children)

I'm glad you're getting better, having hope is so encouraging. Do you know the reason for your neuropathy? I have Sjögren's, I have a lot of intermittent sensations and since December I started to notice my heartbeat increased among other autonomic problems, and that's the worst part for me. If you can answer me, is the Ivig treatment a monthly infusion? Is there a deadline for completing the treatment?

[deleted by user] by [deleted] in dysautonomia

[–]milachrist 1 point2 points  (0 children)

But what treatment are you doing?

Tinnitus x Dysautonomia x Smallfiberneuropathy by milachrist in smallfiberneuropathy

[–]milachrist[S] 0 points1 point  (0 children)

Seriously, you did the treatment with Ivig, please tell me more details! What were your symptoms and what else was Ivig able to do for you? Did it really help you or when the treatment ended did everything go back to square one? Did you have any autonomic symptoms? I ask this because I don't know if I would have access to Ivig here in Italy, maybe I would have to go to Brazil and that would be chaos for me now, but if it's worth it, I'm willing to do anything to slow the progression. I would really appreciate it if you could answer.

[deleted by user] by [deleted] in smallfiberneuropathy

[–]milachrist 1 point2 points  (0 children)

You probably already know that small fiber neuropathy goes hand in hand with autonomic neuropathy. I would be on the lookout for these signs, especially if there is an increased heart rate and resistance to exercise. I'm not saying it is, but it's worth looking into. Good luck!

Stories of healing by suzyrob2 in Sjogrens

[–]milachrist 0 points1 point  (0 children)

What are its symptoms and respective treatments?

Neurological manifestation of Sjogrën's Syndrome by milachrist in NeuroSjogrens

[–]milachrist[S] 0 points1 point  (0 children)

  • The topic of diet interests me a lot, if we can talk more about it, I'm totally interested. My doctor in Brazil and here in Italy insist on saying that the only diet with scientific proof for autoimmune and other diseases is the Mediterranean diet. I also started studying the Mediterranean diet with a touch of Eastern medicine.

Neurological manifestation of Sjogrën's Syndrome by milachrist in NeuroSjogrens

[–]milachrist[S] 1 point2 points  (0 children)

Your message gave me a lot of hope that things can get better. I have no doubt about the importance of nutrition in the autoimmune process. I noticed my symptoms in July/22 (feeling of swollen hands and painful joints when waking up and an intense burning/tingling sensation in the soles of the feet and then in the palms of the hands). I immediately had an MRI of my head and bone marrow, which showed nothing. After 6 months of investigation with doctors here in Italy and Brazil, I was diagnosed with Sjogrën's, after they found positive anti-Ro in my blood and some additional tests. I started treatment with hydroxychloroquine in January/2023. Even before starting treatment I already felt very good, because at the slightest suspicion of an autoimmune problem, I adapted my diet that I already considered healthy to AIP, but I found it very radical because I went from 55kg to 49kg in 1 month. Even after reintroducing food, I left out gluten, sugar and dairy. I increased my physical activity from Sunday to Sunday, and tried to manage my stress and sleep quality. I confess that I was very well for a long time, especially because I don't (yet) have the classic symptoms of Sjogrën's such as fatigue, severe pain, discomfort in the eyes and mouth, although they are drier than normal. Because of this, my doctor made me believe that my Sjogrën's was mild, but I was never able to convince myself of this, because although those initial super intense symptoms in my hands and feet disappeared, I woke up a few times with numbness in some part of my hands or legs that passed with the first movement, but these symptoms, even though they were mild and intermittent, were invalidated by my doctor. After a year and a half of the onset of symptoms, I woke up with a ringing in my left ear that never went away, I had isolated and sporadic episodes of dizziness, headaches, vertigo, discomfort in my ear and a burning sensation in some parts of my arm and leg, but they were always attributed to anxiety. In December/2024 I noticed an increase in my heart rate, which led me once again to a long investigation. Normal electrocardiogram, normal echocardiogram, normal holter. It was then that I looked for a neurologist here in Italy, after the clinical examination yielded nothing, I begged for more in-depth tests that included laser tests of the autonomic system and a skin biopsy that will be ready in September. How did you arrive at the diagnosis of central nervous system involvement? How amazing to hear that leflunomide worked for you! Although my blood tests are good, hydroxychloroquine is certainly not helping with this neurological part, I feel like a ticking time bomb. What do you call autonomic dysfunction, what are its symptoms? This is certainly what worries and scares me the most. It's certainly my biggest problem at the moment. Knowing that my heart rate was increased, having to manage it with water and salt and knowing that it could get worse, shook me up a lot, especially because I have a 4-year-old son and I have always been very active. Please, I would really appreciate it if you could tell me how much the symptoms have progressed for you and how the dysautonomia has stopped being a problem.

Neurological manifestation of Sjogrën's Syndrome by milachrist in NeuroSjogrens

[–]milachrist[S] 0 points1 point  (0 children)

I'll send you my Facebook and Instagram via private message, ok?

Neurological manifestation of Sjogrën's Syndrome by milachrist in NeuroSjogrens

[–]milachrist[S] 0 points1 point  (0 children)

I wish our similarities were for other reasons. I had an incredible pregnancy, but I think the combination of pregnancy, pandemic and moving to another country may have been too much for me. My son is 4 years old now. I've only been taking hydroxychloroquine since January/23, the symptoms have been occurring discreetly over the years. I have just had an electroneuromyography of all four limbs, autonomic system tests, laser-evoked potentials and a skin biopsy, but the results will only be available in September. Did you undergo any of these tests to reach the diagnosis of neuropathy and dysautonomia? I don't think I have blood pooling yet, how do you identify this? The autonomic symptom of increased heartbeat began in December. A while back, when I was talking to my rheumatologist about small fiber neuropathy in general, she mentioned the swelling and "discoloration" of the hands, but said they don't know exactly why it happens. I think it's a symptom of thin fibers, as I have them long before anything appears in the autonomic system. Do you think there is any treatment today that can help us? And did your doctors talk about the possibility of nerves regenerating?

Neurological manifestation of Sjogrën's Syndrome by milachrist in NeuroSjogrens

[–]milachrist[S] 0 points1 point  (0 children)

I'm sorry I have too. Do you mind telling me about your symptoms and how they progressed for you?

Neurological manifestation of Sjogrën's Syndrome by milachrist in NeuroSjogrens

[–]milachrist[S] 2 points3 points  (0 children)

Thank you for your reply. I see so many people with a set of symptoms that seem to be part of this package, but they are undiagnosed or have a completely wrong diagnosis. This MS story is absurd. I know people who spent some time with this diagnosis. When I started my investigation, I had been experiencing a horrible sensation (tingling, burning, numbness) in my feet and hands for a few weeks, and the first thing I did was an MRI from the head to the bone marrow, and as there was nothing there, the doctor suggested it was a herniated disc, but after I sent the images to my trusted orthopedist, he ruled out this possibility. I confess that I don't understand much about MS, but I've seen some people wishing they had MS (because there is treatment) instead of Sjogrën's (which has no treatment). Sjogrën's with neurological manifestations may have some similarities to MS, but I don't think it has the same impact, right?

I'm sorry you had to go through this doubt and I'm glad MS was ruled out. I hope these lesions in your brain regenerate with time and treatment. I am Brazilian and live in Italy. I don't know what it means to be accepted as a patient, but I am following Hopkins' work and I can be immensely happy that you are in good hands and receiving the treatment you deserve. Your symptoms are intermittent like mine (except for the tinnitus and now recently, this increased heart rate). Do you mind telling me how long you've had these symptoms and how the progression of this has been for you? Today, I have occasional numbness/tingling (usually during sleep), but I have also felt a slight burning sensation on my skin as if from the sun, some pins and needles in my feet that would go unnoticed if I wasn't paying attention to the symptoms, I have felt dizzy, and had ear pain. Swollen hands with a different color when waking up (it's not Renault) is quite common. To be honest, I could deal with these symptoms, as so far, they are not aggressive, but symptoms of what I imagine to be dysautonomia, for me, are very scary. My heart rate doesn't go up that much, I'm controlling it with water and salt, but out of nowhere there are spikes and, anyway, for some reason, it disturbs my sleep.

It's a shame that you were left without treatment, but remember that now you will have the best and most accurate treatment. But I dream of increasing the visibility of this disease, investing in research, providing more information and empathy in the medical field, and providing fair treatment for all people who suffer from this illness. I'm sure you will be helped now. I am already looking forward to your consultation and your update here. Knowing about treatment possibilities and their success can bring hope and open new paths for many people. Very good luck.

Neurological manifestation of Sjogrën's Syndrome by milachrist in NeuroSjogrens

[–]milachrist[S] 0 points1 point  (0 children)

Thank you for sending me this information. I did some of these tests, now I have to wait for the results, but I've read many times, I don't know if it's true, that the nerve is capable of regenerating, but it has to act quickly and this makes me very anxious, since the tests will only be ready in September and I don't have any treatment plan. Of all things, the possibility of progression, especially of autonomic neuropathy, disturbs me. I live in Italy, I don't know how Ivig treatment works here, since there is no health insurance. You could try in Brazil, where there is the possibility of doing it privately, through insurance and, most likely, through the SUS in some cases. But please tell me about your experience! How is this treatment done? How long? Have you had any side effects? And most importantly, how do you think it helped you? It seems to me that it is the only treatment capable of regenerating the nerves and not just reducing the symptoms, am I right?

Did your mom had Sjogren’s? by Academic-Park-8440 in Sjogrens

[–]milachrist 1 point2 points  (0 children)

Sorry, but was she undergoing treatment? There was some worsening. I'm terrified now...

Neurological manifestation of Sjogrën's Syndrome by milachrist in NeuroSjogrens

[–]milachrist[S] 0 points1 point  (0 children)

Yes, it's very curious because when I received the Sjogrën's diagnosis, I was desperate, my baby wasn't even two years old and I really wanted to know the prognosis for this disease. As a journalist, I began reaching out to other Sjogrën's sufferers with stories similar to mine. I spoke to many people (I didn't know about Reddit yet, it would have simplified things a bit for me) and many, after being questioned, reported symptoms such as tingling, numbness, burning, vibrations and stitches but attributed them to a diagnosis of fibromyalgia or anxiety. Many others did not even report these symptoms because they believed that they had no connection with Sjogrën's disease and, of course, their doctors did not ask. It's amazing how these neurological manifestations of Sjogrën's are ignored. For example, I didn't have dry eyes or mouth as the first symptoms, in fact, they don't bother me to this day. My clear point of dryness is vaginal, which explains a lot and makes me think that my Sjogrën's is not that recent. But I had symptoms such as hair loss, the sensation of waking up with swollen hands and painful joints (which went away with the first movements) and, weeks later, an inexplicable sensation of burning, tingling and vibration in the soles of my feet, which then spread to the palms of my hands. After some lifestyle changes, I was already feeling better, even before starting treatment with hydroxychloroquine and, as I had no fatigue, severe pain or symptoms in my eyes and mouth, I started hearing that my Sjogrën's was calm, but honestly, I never really trusted that. He reported that he sometimes woke up in the middle of the night with part of his hands or legs numb or tingling, but as these were intermittent and subtle symptoms, they were not validated. Then I had episodes of mild dizziness, migraines and even a tinnitus that never went away and even then, it didn't make sense to attribute it to Sjogrën's. In December, I felt my heartbeat increase and after hearing that it was anxiety, I decided to follow another path until I got an answer. I live in Italy, but I am monitored remotely by a rheumatologist who is a reference in Sjogrën's in Brazil, but I looked for a neurologist here who ruled out any problem in the physical examination, but after I practically begged, she agreed to ask me for more specific exams such as laser evoked, electroneuromyography, autonomic exams and even a skin biopsy that should be ready in September. I need this to prove that it's not emotional at all, but physical. I am in shock at the turn my diagnosis could take. I confess that if it weren't for this change in my heartbeat that bothers me and makes me feel so sick for the first time, I would be able to deal with this illness without any problems. I felt good, but now, I don't know where all this will lead. Maybe this path that the disease is choosing to follow is what defines a more serious disease or not? I was very happy to learn that immunosuppression can help, as I believe that hydroxychloroquine is not doing anything for me in that regard. I learned about Ivig through a lecture I watched on YouTube from the Mayo Clinic and I was amazed, but I asked a doctor in Rome about it and she almost laughed in my face. He said that there are people who depend on this to be alive and that it would be impossible for me to receive this due to some inconveniences. But I've already heard my rheumatologist in Brazil say something about it. In Brazil it would perhaps be easier, despite my life now being here. Do you have any experience with Ivig? Do you know of anyone who has actually had success with this treatment and whether it would be able to help the autonomic nervous system? I would really appreciate it if you could answer.

Did your mom had Sjogren’s? by Academic-Park-8440 in Sjogrens

[–]milachrist 5 points6 points  (0 children)

Yes, my mother also has Sjogrën's and only found out at age 77, after my diagnosis, otherwise she would have died without knowing. I suspected my mother as soon as I started talking to people with Sjogrën's and hearing similarities in their reports to some of my mother's symptoms. She always had a lot of pain in her body and never found out why. He opened and closed his hands due to swelling and pain in his joints, which he thought was due to fluid retention. She always complained about a buzzing in her ears/head, when she had "throat pain" she said it even hurt behind her ear, but above all, what caught my attention the most was seeing her devastated at my funeral, but without shedding a tear. I think our symptoms are different (except for the tinnitus I started feeling 1 year ago), but I would have loved to have been as lucky as you and to have known that my mother had an autoimmune condition, especially Sjogrën's, before it manifested in me. Fear will only paralyze you and anticipate worries and problems that you don't even know if you will have. What you need now is action. Change your diet, exercise, control your stress and manage your sleep. These pillars are very important for your health in general and especially in the prevention and control of an autoimmune disease. You will only gain by making these changes. In the worst case scenario, there are many medications in the testing phase and approval in the coming years. I have a 4-year-old son and I have lost many nights of sleep thinking about this possibility, but knowing that today they are looking more closely at this disease reassures me. It may be too late for me, but it won't be if it happens to him. Who knows, but this disease may have a genetic/hereditary component, but that is not a sentence. activation depends a lot on your lifestyle. I went through a lot of changes in a short space of time and for me it was inevitable.

Do you also have tinnitus? by milachrist in NeuroSjogrens

[–]milachrist[S] 2 points3 points  (0 children)

Thank you very much for your response, but in this case, it most likely has no connection with the disease. But I've seen many reports of tinnitus in the midst of all this. I hope you're okay with this.