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Where do I start - new consultant


bluegirl
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Hi, I am new to this sort of thing, but I need to know that there are other people out there who feel the same as I do. I was diagnosed with POTS 3 years ago and have now become virtually bedridden; Im only 41 and have a daughter (10) and I have had major surgery on one part or other of my body for the past 4 years; it seems as if my body is giving up. I am going into Hospital on Wednesday and am VERY frightened as the last time I was in there 2 years ago no-one knew about or had even heard of POTS!! I had to refer them to the web!! :P

It seems that I see someone new and they put me on another drug for this or that and I am now on 21 different drugs and am sick and tired of taking them all. The morhpine makes me feel sick; other tablets have made me gain over 3 stone and with a lumbar spine that is needs fusing that's not a good thing.

Has anyone else been diagnosed with POTS and then go on to become chronically ill at all?

So far, I have also been labelled with ME, CFS, Fibromyalgia, positive ANA tests, high ESR and CRP, probable connective tissue disease, rhumatological problems (I have to have high does steroid injections for this and need to have bone scans, but now have developed neuro problems that need investigating, hence my admission this Wednesday) and had my thyroid removed in July; have a pacemaker lumbar spine all protruding and I could go on and on.

I have got osteapeania because of the steriods but fortunately taking high doses of calcichew D3 has made my bones a little better and the test results last time were better! :D

The reason for going to hospital is now I cant walk in a straight line, I veer off to the right and even fall over or lose my balance; I mix all my words up sometimes; my head feels fuzzy in certain parts, my vision is blurred, and I generally feel weak all over.

I would be so glad to hear from anyone who has been diagnosed with POTS and whether they have developed any other conditions following their diangosis.

If anyone thinks I have just gone on and on about my problems, Im sorry, but I need to know if Im the only person who feels like this and I also need to know that there are other people out there who can identify with me. I feel so ill so please forgive any rudeness in this posting because the high doses of morphine make me confused.

Please can anyone just reply to me, even if its to say hi.

With best wishes to you all and thanks

J :)

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Hi J and welcome. Wow. You have been through so much. I wish I had something very useful to say. I can say that yes, many of us have more than one condition. It is also possible to be bedridden with POTS, alone, and it sounds like you are challenged with many things.

If you are seeing several specialists, I hope they are all talking to each other, especially since you are on so many different drugs and interactions could occur that you wouldn't want. Have you seen a POTS specialist? They are often electrophysiologists or neurologists.

What are you going into the hospital for?

I hope you find this forum useful, and that you get resolution on all of your unexplained symptoms soon.

Katherine

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J, most of us on this board have symptoms that overlap with other disorders, such as CFS (ME), fibromyalgia, autoimmunity problems, and connective tissue disorders. I am among a subgroup of people with dysautonomia who also has a connective tissue problem called Ehlers-Danlos III, a collagen defect that is hereditary.

For everyone else, I thought I share with you that my mother, in my opinion, has EDS--we were out to dinner the other night and I asked to see her hands---I can bend her fingers backwards just like my own. Also, she has the terrible skin fragility (I don't), bruising (I do) and scarring (mine is moderate, not as severe as heres--her stretch marks from 3 kids are worse than most. Even her doctors have commented over the years on her terrible scars. For the longest time, I thought I got the EDS from my dad, but now I'm certain it's my mother.

Back to you J-- In addition to having autonomic problems, it's possible to have other neurological problems too--unfortunately, many on this board have had lightening strike them twice (or more). I'm certain you will find that, fortunately or unfortunately, you're not alone here.

Nina

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Hi Katherine & Mighty Mouse (how did you get that picture on the side of this feature please)

Wow, I didnt expect to have someone reply so quickly!! THANK YOU.

Yes, I was diagnosed by Prof Mathias in 2002, just 3 months after I had a pacemaker put in. He is THE dr in the UK, although I havent seen him for the past 2 years as I have such a bad back problem that getting up to London to see him, he thought was bad for me, so I have been put on the back burner so to speak.

On Wed, I am going in for a lumbar puncture, another CT mylogram on my lumbar spine, various neuro tests, conductive nerve tests and another other tests they think appropriate.

The trouble is, they dont talk to each other, even tho I have 3 in the same hospital!!

You are So right!! my family and my husband all agree that with all the medication I am taking, their interaction could be causing havoc, but nobody seems to want to take responsibility for my body aas a whole person; each Dr just looks at the part that has gone wrong.

However, the Dr I saw, who I am being admitted under, his Registrar who I saw in December has worked with and in the fields of medicine that I am affected by so I am SO hopeful that something good will come of this.

Anyway, thanks for replying, it was very kind

Best wishes to you

J

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The picutres are called "avatars" and you can use your own or one provided by the forum by clicking the link "my controls" in the top right bar of your screen. Once in the "my controls" screen, look to the left sidebar, there is a section called "personal profile". Avatar info is there.

Nina

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J-

You really have been going thru alot. I think first and foremost your doctors need to all be on the same page. I agree that the medications you are taking need to be ok'ed with all three doctors. Sometimes the meds can make you feel worse. I have had that feeling like you that when I walk I feel slanted or tilted to my left side. My balance is almost always off.

Please know you are not alone in the suffering of several symptoms of POTS. I have had to refer a physician to the web also regarding pots. I now see a specialist in the area of pots and at least I don't have to waste my time explaining what I think they should already know!!

My heart goes out to you. Stay strong and know we are all here for you, anytime!

Susan

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Hi Susan thanks for your messsage; its nice to know Im not alone.

I dont know how many people there are here in the UK and where are you all writing from, it would be nice to know.

Mighty Mouse What is Ehlers-Danlos III - you say it is a connective tissue disease; have was it diagnosed and are you living in the UK?

To all of you who have replied THANK YOU its so nice to know Im not alone http://dinet.ipbhost.com/public/style_emoticons/#EMO_DIR#/biggrin.gif

I wish you all the best and will keep in touch via the forum.

J

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Hi Bluegirl,

Welcome to this forum. You seem to have a lot going on on your plate.

I would ask my doctor on Wednesday if he could work out the meds to see if they don't have bad side effects on you. ie he could stop them all (if possible ofcourse!) and then introduce one after the other gradually. I am sure that some of them are useless if not dangerous for you.

I was bedridden for 2.5 years, until I met Dr Grubb who diagosed me properly. Now I have some medications that give me a certain quality of life but I am still a couch potato most of the time. I can go out for a couple of hours every second day and I leave the house only when I have someone else with me. This way, when I faint, there is someone there who knows what to do.

Good luck on Wednesday.

Ernie

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Steph's description is accurate--EDS is diagnosed using a test called the "Beighton Scale" which you can look up here:

http://www.ednf.org/nosology.html

There are some genetic tests available, but not for all variations of EDS.

I'm located in the US, just outside of Philadelphia. I've not been to the UK, yet, but maybe this summer as a side trip when we visit family in Croatia and friends I have in Greece.

Nina

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Hi Julia,

you have a lot going on right now.

I wanted to let you know that I was diagnosed last year feb with POTS but having POTS trouble since surgery in 2001. I've slowly become worse. I'm in a wheelchair when going outside and still able to walk in the house but I'm having very much trouble with keeping my balance. I also have cognitive problems (short time memory and not being able to find the correct words). I think there are a lot of people out here who became chronically ill because of POTS.

Like it's said before I think you need someone to (re)organise your meds. That can be very important to you. Well, I just wanted to welcome you. Oh, btw I was diagnosed at Leiden University Hospital in The Netherlands. Wish you the best, :P

Corina

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dear bluegirl-welcome to the forum.

i'm not familiar with the workings of the u.k., i'm a u.s. plains kid(south dakota). but to me it sounds like your body is on overload. that many different drugs is to much, some of your trouble may be the drugs themselves and you are treating the side effects of what you are taking as much as, if not more than, the illnesses you have been diagnosed with. the sorry fact that your docs haven't gotten together to come to an agreement/patient care plan is scary to me. i would insist on getting them together and working it out. i know that sounds, and is tough, but you must have them working together for your benefit. we have the same trouble here in the u.s too, so you aren't alone in that aspect.

i hope you get the help and answers you need.

blackwolf

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Guest Mary from OH

J-

Welcome to our happy little family. There are other members here from the UK. Perhaps you could start a MSG with that topic or join the member to member network program (I think that's what it's called). It's on the www.potsplace.com webpage. You will find lots of support and sometimes some answers here and always a place to vent.

Hopefully, you can get all your drs to start working together better. Also, maybe you can print off some info about POTS that you can have them copy to have for reference (off the web). And a list of all your meds. Also, I would talk to a pharmacist and ask them about any possible interactions or problems with your current meds.

Good luck to you and I pray you get some answers soon! It is terrible to be in pain and so tired all the time!! Take care!!

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Hey blue girl, Im sorry you are having a rough time.Ive had POTS for about a year but not beeen treated for it yet.I got diagnosed twice once by another specialist and once by prof mathias.My POTS causes alot of problems mostly with fainting.Sometimes i cant even get out of bed because i feel so terrible.Can i ask why do you have a pacemaker? I also have EDS III.

thanks HayleyX

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