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Does anyone have symptoms of autonomic neuropathy with CMT? I have a normal heart with arrhythmia. I've just read a research paper about autonomic neuropathy in CMT and that it can be a cause of irregular heartbeats. I also have PEM, Post Exertion Malaise which is a sign of chronic fatigue syndrome. I thought that's what I had on the side but now I've just read that PEM can also be related to CMT. This is by far my worst symptom. I'm only mildly afflicted compared to others I have read about. I have high arched feet and hammer toes. My arms are not particularly weak and I don't have problems with my hands. My legs are weak, but I can walk well. I just basically don't feel very good. I'm 71 and was misdiagnosed with CIDP back in 2001. I have only just been correctly diagnosed with CMT.

Hearing your lived experince makes it much easier to appreciate the impact of MG. Thank for sharing ❤ Wishing you good health.

My son has just been diagnosed with HSAN 6 he is only 10 He has neuropathy on feet He is also diagnosed with autism We are seeing genetic counselor He has had numerous foot wounds and his ankles are swollen

Thank you for your testimony.

Love your hair Dr.!!!🤗

as if she cares

polycythemia vera jak2Dr. Rulisent is giving medicine, does this disease get cured by taking this medicine, is there any other countries treatment for this disease , please tell

Can't wait Alan

As a parent that had a child die of MLD it must start with newborn screening!

Why bone marrow suppression occure in PNH..

My son has suspected farbers disease i am from pakistan. Could u plz guide or help. He is 5 months of age

for boards remember it's diagnosed with DNA analysis for MECP2 gene

Does the bone marrow transplant concedred as treatment my nephew has the disease and we worry , we need the real treatment not cortisol . If bone marrow transplant can heal her please answer

How do you diagnose enteric hyper oxalate disorder??

What test gives this diagnosis

Do you have atrophy on one side of your face?

My lesion was on my scalp..all good now.. subcu T cell here.

During a check of my enlarged prostate gland in 2019, my doctor noticed some unusual changes in the skin just inside my anus. He said that it bore watching... Then came Covid and routine medical care was set aside as clinics and hospitals were swamped with patients. Everything was Covid! Hand washing, social distancing,masks. My strange cells were forgotten. Time passed. Then, again during a check of my prostate, a different doctor felt a definite growth and ordered a biopsy. It came back positive for stage one anal cancer caused by HPV exposure. Stage one means that the cancer had not spread from its original place. Prospects for cure looked good. I underwent six weeks of radiation treatment. The first week included chemo. And the last week also included chemo. I began feeling the side effects of treatment around the fourth week. Fatigue, burning pain while passing urine and feces (shit). No nausea. No vomiting. But disorientation and weakness caused by dehydration. We concentrated on symptom relief. Lidocaine cream. Stool softeners. Diarrhea meds. Constipation meds. General pain meds. I finished treatment two weeks ago. Symptoms can even get worse once treatment is over. It can take up to a month for things to get back to something like normal. In about a month or so, I will be checked to see if the cancer is gone. And checked again at regular intervals. If the cancer ever returns, I will NOT go through chemo radiation again. I’m 78. Time to go. I’ll see what options I have for ending my life...as is my RIGHT!

I think i have this. I have congestion. it feels like it's in my esophagus.

I'm in Boise Idaho I was diagnosed with Alpha 1 after I had some fat tissue necrosis with some calcifations. I had a couple abscesses on my hip. I am also diet controlled diabetic type 2 I have lupus also as well as Bechets disease. I am very interested in the shots, I have COPD and heart and kidney disease. The kidney disease is fairly stable I have had a high number of having pnumonia 30 times in. My life, my mother's family had bad lungs too always that and Anemia, my grandfather said we were Norse from Scotland and my mother also. I am always with anemia also. Your breakthrough sounds great. I have just always eaten in my. Diet more meat protein. I amin my early 60s and non smoker. I also lost my left leg below knee from enlarged veins of the foot. I will contact. Your company and tell my Dr's here in Idaho. Thank you truely giving us something hopeful what a wonderful company Thank you

Türkçe çevirisi yokmu

Hi. I am almost 50 years old and have spent most of my life desperately trying to figure out what is going on in our family. There is most definitely a genetic component and perhaps not to the severity of some of the cases I have seen online. But I believe it would be worth further investigating if you would be interested.

GREEN ESSENTIALS for planet Ayurveda boost the immune system and support the digestive system. It also balances the vata, pitta and kapha dosha.

Mine has hit badly….I feel like I am falling apart. POTS naturopath diagnosed me. MCAS histamine problems since a child Benadryl chronically. On hand. Chiropractor often. Chronic digestive problems my mom and I. 3 hernia surgeries my mom. Plus a sliding hiatal hernia, retroverted uterus , leg pain as a child my mom. My occipital moves …..vomited from it. Years back my chiropractor keeps it in place. Need orthotics for my shoes from my chiropractor. Corns, callous, ingrown toenails all are also EDS . I had a blood vessel burst in my foot once years ago….walking to chiro my foot cramped up and immediately my blood vessels burst. Chronically ill 24/7 just found a dr who believes I have this. Waiting on genetic testing.

Went from cane at 50, walker 55, 66 in wheelchair, just diagnosed cmt2b1. Arms very weak also. Emg and genetic testing. I used to walk for miles.

I was diagnosed late (early to mid 40’s), even though had extreme levels of nearly all symptoms. Unfortunately major damage to my lungs has occurred as a result, with advanced Bronchiectasis and contracted mycobacterium Abcessus as a result. I was involved with a trial utilising nitrous oxide to treat the Abcessus over a year ago. The results were amazing for me. The energy levels and lung clearance ability were considerably increased. I felt I had gone back 2 years in my condition. I got back to running, exercise etc. my whole quality of life improved to a level that I would class as almost miraculous. The onset of improvement was within a few days (while dosage levels were still being titrated upwards). It also dissipated gradually over several months upon cessation of trial. I wish more investigations would be done to utilise nitrous oxide. As I feel others may experience similar massive improvement in quality of life, with possible additional benefits upon investigation. My quality of life is very limited now (frustrating when I still have young school age children). If I could pay for similar treatment, I would willingly do so. I don’t pretend that it is a cure, and possibly others may not experience similar benefits. However logically it would certainly be beneficial to investigate due to the potential increase in quality of life.

My daughter has just been dx with this. We're in Minnessota. Can you recommend where we could go here for management of this?

Acromegaly sucks

My wife Annie had Morquio type A. Lived to ripe old age of 60 and passed very suddenly in 2021. I shall love her dearly, honor her life and memory and miss her forever until we meet again Love you dearly Annie O'ROURKE - Ryan. Paul 61524.

Do you know if ketosis helps the condition?

Other new drug used..is Daybue

My daughter is 3 weeks old and was diagnosed with lopd

I really appreciate this overview of advances in potential therapies for this disease, and I’ll look forward to any updates you present on this channel. Thank you Dr.!

I have seen Planet Ayurveda's herbal and vegetarian medications prove quite effective in this condition - Pranrakshak Choorna, Aller-G Care and Immune Booster Capsules and Septrin tablets.

Thank you for this video. After over a year and half of living in pain and getting 2 MRIs and a CT scan and then finding nothing and going from dr to Dr I was finally diagnosed after a biopsy with a desmoid tumor. I have been researching this drug and cryoablation. Is one preferred over the other. Mine is located in the chest wall under the serratus anterior muscle.

Thanks too much Can you write symptoms and signs of Rett syndrome.. like 1.recurrent fits 2.dorsillection. 3.spoon like fingers 4.loss attention 5.flappy 6.not viculized 7.ect. complete Like female common.. muscles! alert.....

from where i can take it i have poroblam for 3years😭

Valproate > Rufinamide

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When it will come to India

Yes it does.

Thank you for sharing your journey ❤

It’s just stress 😭😭😭🙃

Thank you for sharing your story.

Thank you for sharing your story. I have been dealing with MG for 9 years now. I have AChR positive generalized MG. I've been in remission twice once for 7 months and for 4 years I had no symptoms or signs of MG. My symptoms returned last December due to an argument I had with a sibling and an overexerted 3 day move.

I have this cancer. Biopsy confirmed malignancy. Incredibly rare. Two tumors. One in my parotid gland and TMJ, connected to another by my skull base. Surgeons referred to it as a “dumbbell”. Two grape sized tumors. I had surgery back on February 21 a few months ago. The tumors were removed successfully and facial nerve was preserved although it hasn’t recovered yet (told 3-6 months). TMJ was removed as well as parotid gland and portion of my skull. Flap was taken from my thigh and put over prosthetic by facial plastics team. Currently on Turalio and am doing very well. Thank you for posting this content. Very hard to find content on my disorder. I’m a 51 year old male in relatively good health with ZERO pre existing conditions or co morbidities. ICU for 7 days. Released in 10.

Fantastic! Amazing support system… wish I had this when I was going through amyloidosis treatments

I’m so sorry, continued prayers for you all.

How do I sign up for the clinical trial and which clinical trial is it?

Can I ask is there a link between PMDS and prada willi?