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I just got home from my appointment. I go every three months and it is now over a year since i started to see her. This time i saw another doctor who works with her, though she was there and he went to talk to her about me at one point. This new doctor was really very nice and talked to me at length about how things have been and what my current main problems are. I told him that my itching has been very bad, though i have found a way to make it manageable it is certainly not a cure. He has made me a dermatology referral! I don’t hold out much hope of getting help with it or understanding it but i am very happy to have a referral after having had this problem on and off since i was 13!! (That’s twenty years or so). I hope that the dermatologist will be open minded and as keen to help as the POTS unit are… we shall see.

I also explained that i had only felt a very minor effect of the increased dosage of Midodrine due to all the other symptoms i have been having, particularly the viruses which have felt fairly constant in their impact. He decided to keep the dosage at the same level this time so as not to increase it too quickly and also in case the medication is contributing to the increased itching i think.

I told him that i had seen my GP about my lymph nodes in my groin area (though they seem a bit better now) and he felt my neck and underarms (said they seem fine) and took more blood to check. It is nice that they are so thorough. He also took blood to check my kidney function, not sure specifically why but it’s good to feel that they take things so seriously.

All in all it was a good visit, if a little intense, energy-wise. I managed to get my favourite taxi driver to take me there, and although he was not available for the return journey the man who came was also very nice. Even better, i met a nice family in the waiting room who had travelled quite a long way and were making their first visit to see the specialist. The daughter has ME and POTS like me and I spoke to them for a while and swapped emails etc so i hope we have some more contact. All that talking and effort expended has left me slightly buzzing (which is why i am foolishly writing this now, but i will rest when i am done) so i expect a (hopefully) mini crash over the next few days…

Although there is nothing to be done about how hard things have been recently, i really needed some positive feeling to come out of today. I feel that i was listened to and taken seriously as always there, which is all i can hope for in the short term and it is more than many people get! I feel good and cheered by my trip out of the house, and the social interaction was a real bonus.

I went to the hospital today to see the POTS specialist again. I had a good time! I was a bit worried about how i would feel, and considered ringing them in advance asking them to wheel me from the entrance to the ward, as i had to go alone and it was an early appointment again, but decided i would be ok. They have moved and last time when we went to the new location for the first time i felt very disorientated. This time i had to use a different entrance and it was actually better, though a bit of a walk. I have improved a bit the last couple of days so felt ok to walk a bit.

I was impressed with the hospital entrance which had a shop, cafe, starbucks, hairdresser etc and was really pleasant. I thought i would have an easier life if i lived there as everything was so close together and convenient! I went into the shop on the way out just because i could (i miss shops, not that it had anything i wanted really).

Anyway, so the apppointment: I saw her early as the person before me did not turn up (a “DNA” – i had not heard the term for ages and it took me a few seconds to realise she meant they had not rung to cancel: “Did Not Attend”. I like the term – good for medical appointments!), so she had extra time to spend with me which was good as i had a few things i wanted to talk about.

I told her that apart from the first few weeks this three month period since i saw her last have been pretty hard, probably due to the virus i had which i have not really got over… at least i have not regained the levels of energy or strength i had before that. She asked about my typical day again to identify any peaks and troughs in function to adjust my dosage to help me through the low points. She suggested taking a higher dose first thing, staying the same at lunchtime and re-introducing the late afternoon dose which i am pleased about as i seem to have a big slump late afternoon. So that was the POTS stuff done really, she commiserated me on the virus situation as the same thing happened in the period before i last saw her. Hopefully i can avoid catching any more and maybe experience more of the glimpses of feeling stronger that i have had between these long running lows. There HAVE been times where i have managed to do more, feel better in myself and bounce back quicker, but is it hard to remember them after so many weeks that feel like regression almost to the old days before i even got POTS treatment.

I also wanted to talk to her about my pain and discomfort issues. The last few weeks my muscular pain and tension have been particularly bad. I have had to lie flat on my back a lot more (which i forgot to say) just to rest my upper back as i am having trouble sitting comfortably, even in my one comfy and supportive chair in the house. My skin has been very tender and painful to touch, particularly in areas where my muscles are rock hard underneath. I have been having regular massages which have helped a little bit, but only in a very temporary way. I have also made a bit effort to stretch the worst areas every day, which feels good immediately afterwards and i am sure had helped, but again not dramatically. 

I have also had an increase in skin itching and sensitivity, which may or may not be related to the increase in other pain, as well as more pain/discomfort from my already sensitive bladder, meaning that i feel a continuous feeling of needing a wee, especially in bed when lying on my side or when there is any clothing pressing on my stomach. The itching is also worst in bed and we now only have one sheet i can sleep on that does not cause itching, despite the others feeling quite smooth to the casual touch. She thinks the itching is probably just another symptom of my automonic nervous system not working right. She has previously given me a blood test to investigate the itching so there was nothing else to do really.

She gave me a CK blood test to see if there is anything going on with my muscles. While i do not want this to come back positive (after a quick internet search!), I am so impressed that she takes everything seriously and does not just dismiss it as a typical ME symptom and adopt the “what do i want her to do about it” attitude of most other doctors i have known. I am reassured that if there is something she can check out she will. As usual the taking of the blood was painful, as when a needle is inserted into my veins typically nothing comes out, and today was no different. I warned the nurse before we started and she said today we might be lucky, i said i doubted it. It is like my blood is just sitting there and not going around my body with any force at all, which explains a lot. So it needed to be wiggled and a very sharp pain shot up and down my arm and persisted long after the blood was taken. Ouch! I am used to that though and am not really bothered, though it did make me a bit flushed in the cheeks and lightheaded. She also tested my urine to see if i have any infection but that was negative.

She said there is colleague who does work on muscles that i could see but i can’t remember if that was if the test comes back positive or negative – i am not sure what he can do for me – we moved on quickly to talk about other research she is doing on muscle function and ME and she asked me if i would take part (yes). It involves a muscle biopsy but she says it is pretty much like having blood taken, and seeing as that is usually painful for me i think i will cope with it. Not sure when that will happen. She seemed surprised i am so keen to take part. I am just enthusiastic to do anything i can to help with much needed research and it is good to feel i am doing something worthwhile with what limited energies i have. It is something i CAN do. Plus i like going there, it may seem sad but it often feels like a social occasion. I have known them for over a year and seen them as often as any real life friends this year! They are friendly and take time to chat. It is nice to have some social contact and be out and about.

I have made an appointment with an osteopath for Tuesday as i really need to try something new with my upper back problems in particular, although they don’t just treat backs. I am hoping to also get advice about stretching my problem areas, even strengthening them perhaps, or am i getting carried away here? Also i wonder if my pillow is the right one for me (i am constantly fighting with it to get it fluffed up to the right depth) and if he can advise me on sleeping arrangements, seeing as i spend so much time in bed. It may be making my shoulders more painful if lying on my side is putting too much pressure on them, and it has been too painful to lie on my side much lately, but i do prefer it so maybe a higher pillow (tempur?) would be helpful, but i don’t want to spend a fortune on a fancy pillow then it be no help.

My partner is away for the next few days (though she seems to be coming down with something this evening so we will see what the morning brings – virus alert!). It is the last planned trip she has this year except one overnight trip which should be ok. I am really pleased about that as i don’t think these periods of self-care have been kind to me when i am already struggling. The compound effect of several days alone can really have a big impact on me and take some getting over. Apart from the Osteopath appointment i have nothing much happening while she is away, and i am feeling ok about it now that my pain levels are gradually improving. Maybe in a few weeks i can actually have some spare energy to do some of the creative things i have on my list, as recently i have been just doing the bare minimum in daily tasks and i am getting a bit frustrated. Where is the fun? Where is the creative sparkle that makes life worth living? I have been limited even in computer time, tv time and reading abilities… this blog post may be a sign things are improving! Woman can not live on stretching and resting alone.

So, i went to see the POTS specialist this morning for my 3 month review and this involved setting my alarm for seven am… i have to take my midodrine then wait half an hour before rising so i lay there until half past trying to convince my body to rouse itself… it was hard. I had a little breakfast then my partner drove us to town. As it happened the rush hour was lighter than usual and we got there quite quickly, but happily i was seen a bit early too.

I was told last time that she may give me another drug to try on top of Midodrine when i go this time, but had not told me what it may be. I had a bit of a nightmare thought a few days ago that it may be SSRI anti-depressants as i have read they can help with POTS, and also i know that beta-blockers are used too (they have side effects which don’t seem good for a pwME). I started remembering all the side effects and experiences of being on anti-depressants and started to worry about what to do if this was her next plan for me. One the one hand, if it would help the POTS is it worth trying again, despite my negative experiences and associations? I was not sure.

But thankfully all she suggested was upping my current dose again and taking more of it earlier and not bothering with any at tea time. I am happy with this as although i have not felt great the last three months and the first two months after upping the dose last time i really didn’t think it had made a lot of difference, the last few weeks i have felt stronger in myself and think at last it could be midodrine having a positive effect. Month two was plagued by wedding recovery and virus, so that could have delayed any awareness of it working being apparent.

I did ask her what the other drugs may be that we may try in the future. She reassured me it would not be an SSRI, but a new drug to slow the heart, or Florinef, which i have heard of. So i am happy to hear that.

The meeting was over pretty quickly and i came away feeling like i had not said something. I often feel like this though, especially when i have been building up to a meeting for ages then it is over so quick and i don’t trust my brain so much these days to remember everything either.

I did not mention the urine test i took, but more importantly i did not mention the muscular pains and tensions, headaches and skin tenderness that continue to plague me. They are more ME related than POTS related but who should i talk to about them (if anyone)? I am no longer seeing the ME specialist as he said i didn’t need to see them both and the POTS specialist deals with ME patients/diagnosis etc. but when i see her she doesn’t ask about those things. My GP would probably not have the specialist knowledge about ME and I have never got much useful out of them about specific symptoms before. I no longer see a particular GP, i just take lucky dip when i go as i have given up on the one i used to choose and have not settled on a new “favourite” yet. I only really go for sick notes anyway as my employer still wants them(!). I think i will see if these symptoms improve over the next three months and if not i will make a mental (and paper!) note to mention them next time i go. Life would be much more pleasant and productive if these symptoms were not so often present… I think the POTS specialist thinks that all my symptoms will improve as the POTS is treated and improves – this has largely been the case, but has affected a few dramatically and some not so much.

We shall see, as always…

Well, i received my tribunal papers a few weeks ago, and today i have sent in my remaining evidence to the Tribunals Service. I have sent a letter from my GP and also a letter from the CFS/ME specialist, who i saw a couple of weeks ago.

The tribunal itself won’t be until the new year as they have a bit of a back log at the moment, so in one way it is nice not to have to think about it and to have plenty of time to get the evidence in etc. but at the same time i would just like it to be done with, whatever the outcome. This process began last Easter-time and it is now nearly Chistmas! I should be happy to think of all the back payment i will get, but as i doubt that i fit the narrow criteria, particularly for higher rate mobility, i don’t think i will be awarded that, however difficult my mobility problems are.

So anyway, the letters i have sent are the only really supportive evidence that i have, so let’s hope that they are detailed enough… both are quite brief so i will summarise the points made below:

Specialist Letter:

I am writing in support of this patient’s appeal…

Her diagnosis is clearly CFS (ME) and there has been a steady deterioration in her symptoms since i last saw her with increasing headaches, neck pain, fatigue and marked reduction in her physical exercise capacity.

She has considerable problems on standing… and has been diagnosed with Positional Orthostatic Tachycardia Syndrome… gives very marked postural symptoms. This is part of autonomic dysfunction, which underlies CFS.

She is not able to undertake activities of daily living without significant help from her partner. Her physical activity is limited to 5-10 minutes maximum. She has become more significantly depressed because of her disability.

…her disability is severe and progressive and has not shown any significant improvement with previous therapeutic input along the lines suggested by the NICE guidelines…

After the letter he wrote for the insurance company i was a bit disappointed with this one as it was less detailed and specific about what i can and can’t do, and this one for DLA seems more important to me, but it is quite strongly worded so it may be ok.

The letter from my GP is not great, but it is better than the very briefly and incorrectly filled form she initially did. I had to go back and tell her is was not good enough – a bit nerve-wracking!

So now her new letter says i cannot cook a meal for myself, cannot walk more than 150m* without discomfort/rest, that my condition is severe and that i have a certain amount of energy to work with each day so any help that i get makes a big difference in my ability to manage my energy and condition.

*this was the distance used in my rejection letter as the reason i did not qualify for higher rate mobility, but it seems the actual distance they use to judge can be 30m, 50m or who knows what next week, so her saying this may work against me, as i cannot always leave the house to walk anywhere at all…

We will see how these letters affect my appeal, i hope they are detailed/strong enough and help to avoid me having to talk for ages at the appeal about the nitty gritty of what i can and can’t do as it is very difficult to be consistent when there are no definite answers with such a condition as this, and also to concentrate and talk for any length of time, especially under stress.

I will not be having any representation either… but hopefully a benefits adviser will be coming to help me prepare for it once i get the date through, which may help me feel better about it and know what to expect.

Anyway i am trying not to think about it right now and leave it til the new year when it will actually happen… i don’t think there is anything more i can do, just need to see how it goes on the day…

ME/CFS Awareness

ME/CFS Awareness

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