dancer65

Wow! I like to say it's unbelievable but being from the UK I have has similar experiences of being labeled neurotic panic attack and depressed. It is sad because this sort of attitude makes us wary of the medical profession. ! I have found since I had my pots diagnosis I have been treated pretty well at my surgery by three Drs however some I just will not see, ever!

I admire the fact you can joke about it and totally agree you need to make sure that this information is deleted from your notes , but it is another problem to deal with , more energy expended because of an ignorant Dr. I actually went down the path of a formal complaint when a gynaecologist told me all my pain was in my head for 2 years even though the scans showed numerous problems , although a hassel it was worth it as I was then treated by the head of the department and was given a emergency hysterectomy.

Good luck I hope you get this resolved !

I have found florinef has helped my bp I am not dizzy very often these days where before I could hardly stand up before loosing my balance.IT did take a while before it helped and I had to increase my dosage as BP was sitting at 60 / 40 most of the time. I too drink loads of water and electrolytes. I don't eat gluten or sugar as I know they cause me IBS and candida , I also eat an anti inflammatory diet which can be tough when I am fatigued really badly. I was diagnoised last year at 50 after years of been unwell, don't think been older helps the fatigue at all which is now my worst sympton alongside the muscular joint pain,

I did see you mentioned thinning hair, there are many reasons for this and different types of hairloss . Stress mental or physical , Thyroid problems, iron deficiency hormones can often be the cause or auto immune alopecia. Sadly age can be related to androgenic alopecia which can be bcommon in post menapausal women. If it is a big issue for you than a dermatologist can do a scalp biopsy to diagnose.

I am sorry you had to give up your job , that's really tough especially when you love it so much.

Hope your appointments and tests reveal some answers for you , good luck with them

Hi everyone

I don't think u my sweating is caused by the florinef as I had it before taking it but for the first couple of months I had dreadful back pain which disappeared over night.

Thank you both for your support I try not to get annoyed but the wrong buttons were pushed yesterday, a good vent has left me better today

Ancy thank you ! the info on the BP readings was really helpful, not had any guidance on that front from the DRs. Think I may start keeping track a bit more than I have lately. I too was given it for low bp I can say I am very seldom dizzy these days which is a huge bonus, however now I seem to notice the other symptoms more lol!!

Sarah i am sorry you had to give up cheerleading , it is starting to take off over here in the UK , I love watching the cheography! I get the feeling from your post that you felt this was the right thing to do to get things under control, although heart renching , I really needed to hear that

I did mention it to GP last time But he wasn't worried but now he has refered me to a pots clinic in London he may be more interested! Good idea! I spoke to consultants secretary for the third time, apparently he no longer does the TTT and recently has semi retired, she is going to request he writes the report but she was quite curt with me as though I was a nuisance, it's hard not to get disheartened by these kinds of attitudes especially when you are polite!

Thanks again

This last few weeks my tachy has been driving me mad especially at night when I lay down then the hot sweats kick in ! today I was feeling awfu ldoing light work in the kitchen and my BP monitor said error twice before I got a reading of 148/87 HR 128. When I took my BP I noticed my forearms and hands were bright red which subsided after I had sat down for about 20 mins. I seem to be having higher BP readings of late before they were always low 60/40 low and 80/60 high at that time so I am wondering if the 3x0.1 florinef is too much. I was told to adjust my dosage on my own observations. Just wondered what others experience with this is?

I am still trying to figure out what kind of POTS I have, my Dr only had a letter saying my POTS diagnosis and still has not had full report from my TTT last August, again I rang the hospital to ask them to send them to be told a full report had not been written:(

The printer was not working when I had my test and I was told the readings of the test would be forwarded to me,I am feeling really annoyed as what was the point of if the results are not available! I am hoping they will forfill my request to write the report. I was hoping it would shed some light as to what is going on with me. Maybe I am just obsessive I need to understand whats happening so I can try to control my life more!

Sorry for the vent feeling a bit down today I have actually accepted I can only work part time and have spent the morning informing clients I am leaving, I realize determination is no longer enough! On the bright side I hope to have a little more energy for myself

As always thank you for reading hope your day is the best it can be

I understand your concerns on what may happen in the future on these drugs, I have turned down numerous treatments for my alopecia and other auto immune issues I have because of it. Then there is the issue of stopping the drug I always relapse, maybe one day they may find a cure not just a treatment for auto immune disease and POTS

Hi Kriss

Really sorry to read of the the numerous problems you are having at the moment, I hope you manage to find a solution to managing it all

I saw you mention xeljnz although not the same condition you have I having being following the progress of patients taking this drug for autoimmune alopecia on a haiirloss siteThey all have blood tests each month as it is a powerful drug on the immune system which I am sure you are aware of. Many of them are having excellent results, I have read only a few have stopped due to side effects .there has been big discussions on the site about the drug . I know it has been turned down by the European commission for use over here?.Thought I would mention it as knowledge is power to make the right choice for yourself. I have also read it helping RA patients as well.

Wishing you all the best

I hope this is the road to recovery for you

Great news really happy for you !

Yes don't this often , I sometimes can't remember if I have taken them or not so I now have a pill box and set my alarm to remind

Me !

I am on florinef and it has improved my BP , I still have dizzy spells still but not constant like they use to be. I still have all the other symptoms I find not being able to take anti inflammatorys for pain the most difficult as the Dr said they can only prescribe co codomol and that gives me severe ibs . Anti histermines seem to be making me feel really groggy in the mornings at the moment too.

However I am grateful I now can do more than I could 12 months ago when I couldn't even stand up , some thing I have to keep reminding myself in moments of frustration !

Hi welcome

Hi

I am in the UK it can be really hard to get a referral. I have finally managed to get a referral to London college autonomic clinic but it has taken many visits to my GP. I think it is all to do with the cost!

I too get pains in my chest really sharp stabbing a compiled by pins and needles which travels down my arm,all ECG were normal which has put my mind at ease however I when it happens it's unnerving

I hope it is ok to say on here I joined STARS a syncope charity which have a help line, when I was frightened and desperate they were really supportive and constructive

I have blurred vision practically when I am tired. I also am very light sensitive

Oh happy new year too !!

Ok I will do , I am not due back for ages though only just had all my bloods checked and they were all ok as usual. I do know on my blood test sheet you give to the nurse it said chronic fatigue

No don't even know what that is to be honest!

I have been in contact with stars I had a phone conversation with a lady there but only been on website with postuk .

A happy new year to all, may it be a better one for all ,

Faye I relate to the relief of finally having a diagnosis even if it is not really a great one ! I found this forum a great comfort when I really confused about what was going on with me,

I hope you are feeling better soon

Sorry to hear it wasn't that helpful,it can be hard to find that Dr who recognises what is going on and helps you move forwards , good luck to you too

Thanks corina! I hope this too will help me to move forwards whilst I have improved this last 12months I still cannot work full time and certain symptoms are there 24/7

M&t I lived in London for a good few years so know the nightmare driving there ! Did you find the appointment helpful, also if you were on meds did you have to come off them for appointment?

Thanks again

Thanks for that information and well wishes I am based in mid Wales very rural so I would get the train I couldn't drive that far at the moment

My Dr has just referred me to university college london . Just wondered if any one has attended this hospital any info would be gratefully received . Also roughly how long was the waiting list ?

Many thanks

I hope you had a good time at the party and you are not feeling too bad today