1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

Apointment with m e specialist tomoz any helpful info to ask

Posted , 5 users are following.

russ151
russ151

Hi I have finally have my appointment with m e specialist tomoz it's been 3 years of a roller coaster ride to say the least I have had loads of blood tests over the course of the last year has anyone any idea of any more blood tests I can ask for I am sure that it's m e every symptom fits the bill my neurologist and rheumatologist say the same maybe it's a bit of closure for me I have had so many tests done anyway just if anyone has any advice to take with me I would be grateful have just watched the forgotten plague really good to know there is research going on into this crippling disease although not enough quite moving towards the end thanks for any info

0 likes, 14 replies

14 Replies

  • caitlin39841
    caitlin39841 russ151

    Posted

    Hi Russ. heart felt commiserations on becoming the victim of this awful illness. also thank heavens you've  been diagnosed and are getting help. i hope/presume that it's  a diagnsis early on  in the condition, coz if well managed you have a good chance of overcoming the condition.  

    NICE guidlines give a list of the tests that need to be completed before a diagnosis of ME can be  made. these tests are designed to exclude other conditions that present with similar symptoms as ME.  hence ME is a diagnosis arrived at by excluding other conditions.  however, those tests do not test for  viatmin b 12 deficiency or Pernicous Anaemia, the symptoms of which overlap with ME.

    In fact research is now discovering  that a number of people diagnosed with ME actually had, B12 D or Pernicous Aneamia, that when treated all ME symptoms dissapeared.    therefore, it's a good idea to have your b12 & Folate levels checked.  b12 d was my route to ME. low b12 levels  predispose to infection.  i got a viral infection that i couldn't shft & the rest is history.

    all good luck  with clinic treatment.

    C

    • russ151
      russ151 caitlin39841

      Posted

      Hi there Caitlin unfortunately it's been a year and half since this really stopped me in my tracks and year and half before that I had the initial respirate infection but got by managed to work but had persistent infections hope it's not to late to recover I definatley over done things not my fault just never had a doctor who believed that something was wrong
  • Beverley_01
    Beverley_01 russ151

    Posted

    Hi Russ,

    It sounds like you have already come to terms with ME being the cause of yr symptoms. Yr neurologists and rheumatologist seem to be on the wavelength as yourself. I'm wondering whether you're asking is it possibly could be anything else at this point, as a last chance to prove It otherwise?

    What I've noticed on here as other possibilities are, like Caitlin states-vit d and vit b12, thyroid, lupus, Lyme disease, anemia , mono (type of infection) have you been tested for these already?

    Hope you get the closure you want tomorrow and that you get a good nights rest tonight.

    Best wishes

    Beverley

    • russ151
      russ151 Beverley_01

      Posted

      Hi Beverley yes more or less know it's m e still a little bit of me wants them to find something but they never do I know I have made it worse but i never would have guessed it early on it was slow and mainly strange headaches i just want to get better so bad I hope I feel some closure thanks for your support
    • Beverley_01
      Beverley_01 russ151

      Posted

      Hi Russ,

      Its hard not to feel you've made things worse with this. Diagnosis seems an issue for many. I didn't know for 18 mths what my symptoms meant and thus tried to carry on too. Its also hard to believe how many people have this. I recently joined the me association, £18 a year. They help with research and information, quite useful.

      Let us know how It goes tomorrow.

      Best wishes

      Beverley

    • russ151
      russ151 Beverley_01

      Posted

      Thanks Beverley and thanks to everyone on the forum yes I wasn't to know no point looking back it's been some journey somethings have improved so I have to take some positives I honestly say about a year ago now I thought i had had it the pain was unbearable to many things to mention as I assure you are all aware chronic fatigue is a pityfull name to this disease I must admit I don't like it and only hope in time they find a cure still have hope thanks
  • karin65289
    karin65289 russ151

    Posted

    Hi Russ.

    I hope that you will have some clear answers and support from your visit to the specialist.  Karin

  • jackie00198
    jackie00198 russ151

    Posted

    Russ--I'm so glad you saw "Forgotten Plague." There is hope, because some very very bright people are now doing research, as you saw in the film. Especially that researcher at Stanford (I think?), who's son is so terribly ill.

    My best advice for your doctor's appointment, if you are able. Take with you the following: a list of drugs you're taking, with dosages (including drugs you've tried but didn't work or had bad side effects). A brief history of your illness, including when you got ill, and your current symptoms. A list of all your current doctors, with addresses and phone numbers. And most important: a list of questions. I found that by having all this information at the ready, I maximized my time with the doctor, who was able to see my situation at a glance. I actually printed out all this information from my computer and handed it to the doctor before we started talking. He said he wished everyone would do that.  

    • jackie00198
      jackie00198

      Posted

      Also, results from any tests performed by other doctors. It's always preferable to have the actual information printed out by the various labs. Including images from MRIs, etc.
  • Beverley_01
    Beverley_01 russ151

    Posted

    Hi Russ,

    How did it go?

    B

    • russ151
      russ151 Beverley_01

      Posted

      Hi Beverley it went as I expected it to go I am going to get some help from his colleagues on managing the condition he told me a lot what I had already researched and said that I am managing very well but need to still not be doing as much keep my expectations low as it is very hard to progress as I have seemed to find my base line I am going to see a osteo who deals with m e patients he has helped people and will be going on the nhs for a trial so fingers crossed he can help hope you are well thought I had replied earlier in week but must not have sent the message 
    • Beverley_01
      Beverley_01 russ151

      Posted

      Hi Russ,

      Glad it went ok and you're going to get some input from them. I've not quite managed my baseline yet but do feel the cfs/me service is helpful. Hope that the osteo is useful, sounds like yr lucky in him being trialed at this place at this time. You seem positive in what has been said, Are you feeling confident in what they can offer you?

      Beverley

    • russ151
      russ151 Beverley_01

      Posted

      Hi Beverley 

      I think the baseline idea is helpful but you never can tell what works for one person doesn't for another I have met people with this from varying levels of this illness and asked lot of questions to the onset of there illness and before although mine was a respitary infection I went through a great deal of stress for at least 2 years before  I would say half the people I spoke to have had the same   sort of build up to it so there's dysfunction to the immune system from stress for me I was sceptical at first with this osteos approach as you think oh yeah another fraud  but after speaking to some people he has helped from my group and looked into more what he is saying I think he has part of the puzzle solved but for some people he can't help i can email you if you want more details of his approach I am obviously hoping I will get some benefit holistic therapies do help for me diet and mindfulness brings a better balance to the body promoting healing I think your attitude has a lot to do with it now I have accepted what it is and it's not a overnight process I think you can help yourself I am more positive in my approach you have to have hope 

      Russ 

    • Beverley_01
      Beverley_01 russ151

      Posted

      Hi Russ,

      I think you are correct about hope as it keeps us going. My cfs/me is from a car crash and Thus, I'm in a slightly different place but, it seems that there needs to be initial trauma-physical, emotional, psychological. Most people on here seem to have had a virus first. It Is such a strange condition. I had simply no idea about it before I found out I had it. I was extremely lucky to survive the crash and was expecting a full recovery. There is such adjustments you have to make with this, think w've all had quite a journey on here.

      It would be good to know about the osteo's ideas and you can private message me on here.

      Best wishes

      Beverley

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.