Maggie's expecting and the ghosts have a night trip

[im_i]

More sims 3 pic spam! Not as large this time. The hospital seems to have become my second home. I've not been very well recently, well not for about 6 months, and I am just constantly having appointments with different doctors and specialists. They think I have chronic fatigue syndrome (or M.E), but we need another specialist's opinion first to be

Comments

[pennysims]

I'm so sorry to hear you're that sick :( Have they scanned your brain? (Sorry, I don't know how I should say that in English.) Collapsing 12 times a day sound like a serious neurological problem. Of course ME/CFS is a neurological illness too but I'm not sure how common that kind of symptoms are in ME/CFS.

If my memory serves me right, you live in the UK... And Simon Wessely is quite a big name there, isn't he? Unfortunately he just couldn't be more wrong and he has absolutely no idea what kind of an illness CFS/ME is. It's not another name for "depression" or "somatization". It's so sick that he thinks GET (graded exercise therapy) can cure CFS even though the diagnostic criteria of CFS says that exercising (and for example cognitive exertion) makes the patient WORSE and can even kill him. It's also absolute nonsense that CBT (cognitive behavior therapy) could help. Well, it can help if the patient is depressed because of his illness but it won't cure the main illness (in this case CFS) he has. I can't understand how Wessely can be so stupid. CFS is a neurological illness, often caused by a virus, which affect the whole body (brain, immunological system, hormones etc.) so it's just plain stupid and sick to think that the patient is "making himself ill by negative thinking".

Hehe, sorry about this. But I really feel your pain.

I hope that doctor can help you and I also hope you don't have ME. But even if you had it, there're a lot of great treatments to try. I know many doctors say there's absolutely nothing they can do, but fortunately they're wrong because there is. For example low dose naltrexone (LDN) is a great treatment for CFS/ME and if you're having cognitive problems, you could perhaps try a medicine that improves the blood circulation in brain. There're several hundred medicines that can help. Sometimes even cure can be found, for example antiviral drugs and antibiotics can cure the illness in some cases. There's always hope.

Take care :)

Penny

[im_i]

Yes I have had two different brain scans, an MRI (where you are in a tube thing) and an EEG (where you have this net thing on your head). Both found nothing just like all the other tests I have had. :/

I know exactly what I you are saying. One doctor I saw was positive that I had depression, but I know I don't. My Mum suffered for years with depression, so I know the signs and effects of that. I know what I have is not depression, and that doesn't make any sense at all really, because honestly the last few years of my life have been the happiest of my life now my mum is well and we moved to a place we really love. This illness just seemed to come out of no where. And the syptoms of depression are completely different; with what I have got now it's like I physically can't do normal activities. I will try to keep pushing myself through the day at school or whatever and will just end up drained and then collaspe. It is hard to describe my syptoms, but yeah it is not like depression. It is really hurtful when a doctor just kind of labels you as depressed, when they have no evidence to base that on, and just because my mum had depression definitley doesn't mean I do.

I have heard a lot of good things about this docter, so I really looking forward to seeing her. It will be great to talk to a doctor who actually has some knowledge on the condition; many of the doctors who I have seen don't seem to have a clue.

You seem to know more about it than many of the doctors do! Thank you for your words, you have given more hope that there are things that can be done whatever it is.

[pennysims]

It's good they've scanned your brain and it's a relief that there's nothing very seriously wrong with your brain (like a tumour) but of course it's kind of disappointing that nothing has been found because if you've no diagnosis, you can't get any treatment either. And when doctors don't immediately find a reason for your symptoms, they usually say it's all in your head... I assume you haven't been in SPECT scan? It would be more accurate test than MRI and EEG because it shows if the blood circulation and brain metabolism are not OK (and these two are usually the main problems in CFS).

Do you have a low blood pressure by the way? That's really common in CFS and that could perhaps cause collapsing too.

Have you been to immunologist or an infection doctor? Is your immunological system OK or do you for example have low IgG levels?

I'm 100% sure you don't have depression. Well, it wouldn't be a surprise if being really ill made you a little bit depressed/sad at times but I'm sure your symptoms have nothing to do with psychology. It's just that when doctors don't know what's wrong with you, the easiest option is to say the patient is crazy. They usually don't even need any evidence to say that and it helps a lot if you're a young woman because then they can always claim you're having an eating disorder or that everything is because of your hormones. I've for example had quite a high fever for six years now but some (male) doctors have said that "it's so common in young women, it'll go away with time". Yeah right.

Are you still in school by the way? If possible, it could perhaps be better if you could take a break and try to rest as much as possible. In many cases the body could kill the virus (or something else that has caused CFS) if the patient didn't push himself too much. The problem is, of course, that 99% of doctors don't know anything about CFS and they usually courage the patient to do more. This unfortunately has resulted in many deaths because exercising and pushing yourself too much can be really dangerous for those having a serious CFS.

I'm sure you'll get better at some point. It can take a lot of time and you probably have to deal with many stupid doctors and try many different treatments but I'm sure that a cure can be found for everyone. It's perhaps not realistic to hope you would be perfectly healthy in just a few months but you'll get there at some point.

This is totally off-topic but how old are you by the way? :)

Penny

[im_i]

No I haven't had a SPECT scan. Never heard of it! Maybe I'll ask about it if we don't come up with anything when the specialist sees us.

Low blood pressure was one of the first things that was checked, and its all fine as well.

I don't think I have seen an immunologist or infection doctor. Oh one thing I heard that was common with CFS is having a bad virus before? Well I had one or something similar a couple of weeks before I started collasping, so maybe that has something to do with it?

Yeah I had a few doctors tell me fainting is common in young girls so it was nothing to worry about. Ha.

I am still at school, but haven't gone in full time since December. I stopped going in all together at about February, and have just been having 1-to-1 tuition about once a week for under an hour since then. I was definitley pushing myself to much back then, I was forcing myself into school everyday, and I just kept getting worse, so it was definitley right to stop going in...even though I hate just sitting at home. I went to the hospital today, and my doctor was just so happy that I haven't collasped in over a month, and yeah that is great and everything but i'ts only because I haven't been doing anything. I need some support and treatment so I can try and get back to normal in the future, but hey we are slowly getting there.

Yeah I am sure I will too. I have accepted the fact that it will take time, but I'll get there eventually.

I'm 15. :)

Thanks for all your help.

[pennysims]

Sorry it took so long to reply.

I'm not sure how often they take SPECT scans in the UK but I hope they take them more often than they do in Finland because it would be quite a good test for CFS/ME patients. Here it's impossible to take SPECT scans in any other city than the capital and yeah... I don't live in Helsinki so no SPECT scans for me. (But on the other hand ME/CFS is not my main health problem so it isn't that important for me.)

Yeah, it's very common to have a very bad flu or something like that before getting CFS. Viruses are probably the main cause of CFS.

How awesome! Of course collapsing 12 times a day is really common among young women so there's nothing to worry about! It's like a hobby for them and who wouldn't love collapsing? It's even better if you hit your head badly when you collapse! Why should anyone worry about something as awesome as that?

It's good that you don't go to school full-time anymore. Resting is really important especially at the beginning of CFS.

I know what you mean - if you're doing absolutely nothing and have one symptom cured, then every doctor thinks that you're fine and nothing has to be done, no matter how serious your other symptoms were. How logical...

You're so young that it's even more sad that you've to be sick. I was around 13-14 when I got ME/CFS so I kind of know how hard it is for a young girl to get your doctor understand there's something seriously wrong with you.

I hope you'll get better within months. Take care of yourself.

*hugs*

Penny

[pennysims]

How are you? I hope you aren't feeling too bad... Did you already see that doctor?

*hugs*