What should I be asking the Doctor?

[Scarlett]

I hope you don't mind me asking this rather random question here - I haven't the brain power to go through all the info on here about treatment protocols and diagnostic tests, and I don't have a huge amount of knowledge of all the technical medical stuff you discuss on here - I'm learning slowly, but it's taking time to get my head around it!

1. Basically, I've been ill for just over five years, diagnosed about four years ago with ME. My diagnosis followed a two week stretch in hospital where I was tested for everything under the sun. I don't remember the names of any of the consultants I saw, neurologists or endocrinologists, and I don't know what I was tested for. How can I get a copy of the information? Can my GP give it to me, or do I need to go through the hospital?

2. Also, just before I was admitted to hospital, I had been on B12 injections every month for a year with suspected pernicious anaemia. They were confused by my response to the injections because my level was staying very low. I stopped taking the injections about two or three years ago, because my doctor and I decided to trial it without them and see what my health was like, and I didn't really notice any difference in illness pattern.

Because my B12 levels were very low a few years ago, and other blood results were weird too, I think I should order another blood test when I see the doc next week. What should I ask to be tested for to get a good clear idea?

3. And, finally... I have decided I've had enough of worrying about my health and cashflow (I'm self employed designer), and at the moment I can't walk very far at all, and I want to pluck up the courage to go through the nightmare of applying for DLA. I've never done it before because my illness fluctuates a lot, and because I can't face it when I'm unwell, but we went to the supermarket at the weekend and because we couldn't park in the disabled car space I had to walk right across the car park and was so exhausted by the time I got to the door of the supermarket I had to rest! It's just ridiculous to live llike this when I could be eligible for help... so the last question is Is there anything I can ask my doctor to help with with my application?

Thanks for reading this - I hope it makes sense, cos my head's as clear as mud today!

 

[taniaaust1]

I assume it may be similar where you are, in Australia we have a freedom of info act which makes it our legal right to have access to our medical records.

To get them from a hospital one just applies usually in writing to the hospital with a request, (big hospitals often have their own forms one will need to fill in for a copy of ones medical notes and there also may be a small fee involved to cover the admin side of it all).

It is quite possible your doctor wont have some of the info the hospital may so I suggest getting both a copy of whatever info the hospital has on you along with requesting a copy from your normal doctor of any tests you've had done.

Ive never had a general practioner charge me for copies of my tests. Over time all my doctors have become quite happy for me to access my test results and get a copy from their receptionists (as they are so used to me wanting copies of everything).

I agree you should be applying for DLA (I assume that is what the disability pension there is called). One never knows either when ones ME will get worst, so its best to be applying while able, nothing is worst then having to fight the system when you are even sicker. That whole process is a nightmare, no matter what country you are in and can take quite a long time to sort out. Best luck with it.

As far as B12 goes. Thou I dont show a B12 deficiency.. it helped me in a way as its helped many others with ME. I was having a B12 injection every 3-4 days for a couple of years. Some with ME used to have them daily. Sounds like you never had enough to help the ME. (with ME one can apparently have a B12 deficiency in the cells themselves or brain while the blood tests I believe usually only test the levels outside the cells).

I strongly suggest you look into all the methylation protocol or just B12 supplementation in ME to get more of an idea of the forms of B12 we are using and how they are being taken (nowdays most seem to be taking it subliminally).

 

[justy]

Hi Scarlet, you can request a print out of all the tests you have had done (request WITH lab ranges as well) just pick an amount of time that you want to go back over.

The pernicious anemia is strange that you didnt notice any difference - maybe you were not having enough injections. I have low normal B12 and am having a marked benefit to my overall health by doing daily MB12 injections (i am prescribed them by Dr Myhill and self inject - its easy) I think you need to be asking your GP about this, the whole B12 thing and i suggest trying again but with a higher or more frequent dosage. I cant recommend what else to ask your GP as they usually cant do much for M.E. The symptoms of pernicious aenemia can be very similar to M.E - i have been to look on their forums and its surprising at the overlap.

I took the plunge last year and applied for DLA, i couldnt have done it wqithout the help of the benefits and work website. You pay a one off fee of about 10 to join and then you can download their booklets that take you throuhg the process step by step - having a supporting letter from youre GP will be helpful - they also inculde a tick box thing you can give to your GP which will help your GP to write the right thing. DLA is all about proving you need help (even if you dont get it) i was awarded higher rate mobility and middle rate care without a medical - i sent in lots of suppelmentary pages and info like test results (that i had done with Dr Myhill) etc. The important thing is to make the form fit your health and care needs not to try and fit yourself into the form. If you want to ask me anything else about this feel free - it was a long process that took some time but well worth it.

 

[Scarlett]

Hi both -

Thanks so much for your replies - I was worried my question was a bit rambling! Yes, I've joined the Benefits and Work site, and downloaded their guides. It looks really helpful - it's frustrating that in order to get help that you desperately need you have to learn to 'play' the system, they don't do themselves any favours do they!? I wish, just once, we were treated like actual human beings, but hey ho.

My doc appt is going to be interesting, because my old doctor has left the practice, so I don't actually know the one I'm going to see. It's always horrible seeing a new doc, I have no idea what their approach to ME will be, so we'll have to see. I can only hope my luck will continue - my previous GPs have all been supportive.

The B12 thing... before I ended up in hospital, for a year I was taking B12 injections (cobalamin), because my doctor thought I had pernicious anaemia. My red blood cells were also 'fat' and enlarged, another symptom of B12 deficiency. There was a group of people at the surgery who had B12 deficiency, and my doc and nurse were baffled by me because my levels either continued to fall, or stayed low, whereas they were showing high levels following the same treatment. I did feel better with the injections at first, it improved my energy levels, but over the course of the year I went downhill, even with the B12, to the point that I was admitted to hospital with suspected stroke / brain tumour. Following tests it was suspected MS, and then eventually it was ME.

After I came out of hospital I continued with the injections for a while, and noticed a slight pattern during the course of the month (I was having them monthly), but apart from a small change in energy after the jab I didn't notice any long-term difference, my illness fluctuated up and down regardless. I missed a couple of injections because I wasn't well enough to attend the surgery, and noticed that my natural cycle was making the small changes I'd noticed, not the injections. At that point, my doc and I decided to see what difference it would make without the injections.

I think I could do with them again now though!

 

[taniaaust1]

Take care what form of B12 injections you have.. one form them cant be had as much as those with ME need as it breaks into cyanoid (im stuggling with my brain right now and think I have that word wrong.. hopefully another can advise).

I think its the cyanocobalamin one we cant use as much as we need and we shouldnt use as its one our body needs to be able to convert and many with ME have methylation issues and cant convert.

I was on the B12 Hydroxocobalamin injections but some apparently dont do well with that and there may be a better form of B12. Anyway.. make sure you are injecting an active form of B12 and not the other form as some of us cant convert, that was probably your issue.

 

[justy]

Good luck with the new GP Scarlet, i know it can be so difficult when you have to go over it all over again and find out how sympathetic/helpful they will be.
I agree with Tania, that it may be the cyano that you had problems with. It might help to try Hydroxy or methyl. If you can get someone to prescribe it for you then i really recommend daily small injections - they have really helped me - once a month is probably not enough. Where you having them subcutaneously or intramuscularly? i think intramuscular can be taken up too quickly and leeched out (or something like that)

I found the benefits and work site really invaluable - couldnt have done it without them! but its still hard work getting it all done - good luck!
Justy.

 

[Abha]

Hi Scarlett,
I have pernicious anaemia/autoimmune gastritis besides many other ME/organophosphate contact related problems.A very good book re B12 issues is "Could it be B12" by Sally Pacholok/husb Dr Jeffrey Stuart(USA).You can get it in Uk(paperback for about 5.I got it from Cygnus books.I think Rich said there is a more recent edition(than mine).In the Uk there are various organisations(one in wales)with help re Pernicious anaemia/related questions.
Could It Be B12 - An Interview with Sally Pacholok - Part 1 - YouTube
? 9:17? 9:17
www.youtube.com/watch?v=L4hzhdREDng
Good luck...