I had my appointment with Dr Chaudhuri today. Though I was ill prepared for this appointment due to extreme tiredness he was very good and mentioned some of the issues I forgot to mention or I didn't know well.
He is very approachable, down to earth. He spend over an hour with me. I think he's very knowledgeable, he is very aware of the issues that ME brings in one's life.
After a long introduction of my symptoms, he wanted to list my symptoms that effects me most. My worst symptom is fatigue. Then vertigo, jaw pain and the gastro symptoms.
He found it strange about not getting regular B12 injections as after initial B12 treatment my levels are bordering normal levels. NHS only gives the injection if you're severely deficient and according to them it is not severe. He mentioned the importance of supplementing B12 and vitamin D.
It was a long consultations, my husband was present and taking notes. After I listed symptoms of chronological decline of my health, I showed my recent blood tests and scans etc. I listed current medication, he commented on them.
He is going to send my GP a letter for more tests. He believes I have an adrenal issue and he was suspecting of Behcet's he'll advice a blood test regarding this also.
Afterwards he examined me, I was pretty stiff worse than I thought I was, couldn't lift my legs. He checked my neck and jaw where I have pain. Simple walk, checked my eyes etc. Then he checked my cognitive skills. I failed so badly that I was embarrassed. I could not reverse spell words, I could not count backwards from hundred minus seven each time etc. I could not remember the 3 sentences I'd read. I am mortified! I didn't realize my mind went down with this disease! He suggested I should read more and use some of my cognitive skills more. Suggested driving actually. I hate driving...
He advised to slow down, take exercise only if I want and if I can. I like swimming, he thinks this might be a bit to much for me on a regular basis. He explained the dangers of over exercising really well.
He suggested fodmap diet for my gastro issues, but he said he is not an expert on this. I might need to see an expert for my gastro symptoms.
He mentioned very mild sedative for dulling pain and muscle relaxing properties not for the psychological effects.
He diagnosed me post viral fatigue. I asked is this ME? He answered "yes, same thing" . I said I had the chicken pox virus 12 years ago, he mentioned the virus, herpes zoster in my case stayed in my body, entered in my DNA and is there to stay -unfortunately. He didn't mince his words, was very straightforward on this. This naturally upset me. I knew this but hearing from him was hard. I felt those 12 years of my life just went, wasted really. He did not think that I am in a very bad condition, I'm sure he's seen ME sufferers in debilitating conditions. I left work and I also live half the year in a better climate. I guess I'm lucky. But I can't help thinking the years lost, losing my career, fertility, friends & family... Well, loosing my youth, I feel I'm aged prematurely with this disease.
He didn't think at this stage I have active virus in my body. But my DNA is damaged. He didn't suggested any genetic testing or any viral lab works. He explained that there hasn't a solid body of work yet on the subject of anti viral medicine.
I think this is more or less what happened during the consultation. Sorry about my writing, I'm so tired today. I might have forgot some of the stuff. We took some notes but I can't write all the notes in here, if you want to ask anything I'll try to answer.
I funded this consultation myself. But Dr. Chaudhury will contacting my GP for further tests.
He is very approachable, down to earth. He spend over an hour with me. I think he's very knowledgeable, he is very aware of the issues that ME brings in one's life.
After a long introduction of my symptoms, he wanted to list my symptoms that effects me most. My worst symptom is fatigue. Then vertigo, jaw pain and the gastro symptoms.
He found it strange about not getting regular B12 injections as after initial B12 treatment my levels are bordering normal levels. NHS only gives the injection if you're severely deficient and according to them it is not severe. He mentioned the importance of supplementing B12 and vitamin D.
It was a long consultations, my husband was present and taking notes. After I listed symptoms of chronological decline of my health, I showed my recent blood tests and scans etc. I listed current medication, he commented on them.
He is going to send my GP a letter for more tests. He believes I have an adrenal issue and he was suspecting of Behcet's he'll advice a blood test regarding this also.
Afterwards he examined me, I was pretty stiff worse than I thought I was, couldn't lift my legs. He checked my neck and jaw where I have pain. Simple walk, checked my eyes etc. Then he checked my cognitive skills. I failed so badly that I was embarrassed. I could not reverse spell words, I could not count backwards from hundred minus seven each time etc. I could not remember the 3 sentences I'd read. I am mortified! I didn't realize my mind went down with this disease! He suggested I should read more and use some of my cognitive skills more. Suggested driving actually. I hate driving...
He advised to slow down, take exercise only if I want and if I can. I like swimming, he thinks this might be a bit to much for me on a regular basis. He explained the dangers of over exercising really well.
He suggested fodmap diet for my gastro issues, but he said he is not an expert on this. I might need to see an expert for my gastro symptoms.
He mentioned very mild sedative for dulling pain and muscle relaxing properties not for the psychological effects.
He diagnosed me post viral fatigue. I asked is this ME? He answered "yes, same thing" . I said I had the chicken pox virus 12 years ago, he mentioned the virus, herpes zoster in my case stayed in my body, entered in my DNA and is there to stay -unfortunately. He didn't mince his words, was very straightforward on this. This naturally upset me. I knew this but hearing from him was hard. I felt those 12 years of my life just went, wasted really. He did not think that I am in a very bad condition, I'm sure he's seen ME sufferers in debilitating conditions. I left work and I also live half the year in a better climate. I guess I'm lucky. But I can't help thinking the years lost, losing my career, fertility, friends & family... Well, loosing my youth, I feel I'm aged prematurely with this disease.
He didn't think at this stage I have active virus in my body. But my DNA is damaged. He didn't suggested any genetic testing or any viral lab works. He explained that there hasn't a solid body of work yet on the subject of anti viral medicine.
I think this is more or less what happened during the consultation. Sorry about my writing, I'm so tired today. I might have forgot some of the stuff. We took some notes but I can't write all the notes in here, if you want to ask anything I'll try to answer.
I funded this consultation myself. But Dr. Chaudhury will contacting my GP for further tests.
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