[Mrs M]

Hi everyone!

Not been around for a while just tried getting on with things but I just feel sooo terrible at the moment.

I'm no further forward with a diagnosis almost two years on and I am really getting fed up and feel that the rheumy is just not interested now. I had an appointment with the CTD clinic today and came away feeling such a fraud that I'm not well. They have now come to the conclusion that I have fibromyalgia and urticaria. I am not questioning the urticaria as I feel all the symptoms are there and hopefully now they've changed the cetrizine tablets that caused horrendous headaches hopefully these loratidine will work better.:worried:

I really don't feel that I can put my symptoms down to fibro!

Symptoms are: joint pains, headaches, skin rashes, chillblain type rashes on feet and hands, swelling of eyes face and lips, stiff joints, muscle aches, red flushed appearance on cheeks and across nose, stomach pains, nausea, diahorrea, right hand tremors, corned beef type rash on legs, IBS, sinus problems, fatigue and mouth ulcers...

Hope you're keeping up because I'm lost:lol:

Just to say I'm also under a specialist dermatologist clinic since December last year and they've recently done blood tests and a mevalonic acid test on my urine? Any how Rheumy let me know today that the cryoglobulins test came back weak positive but he believes it should have shown negative so now he wants me to have another tomorrow. I feel that they should acknowledge the test instead of for some reason trying to dismiss it. I had this test done a year ago and it was negative.

So now my blood tests that are showing anything are the cryoglobulins, RF above normal range and lymphocytes below range. Can anybody make sense of these as I'm sure they have nothing to do with Fibromyalgia.

Oh yes Rheumy let it slip that Dermy were convinced that I had a connective tissue disorder but he's 100% I haven't. Oh my just to get to the bottom of all this and start feeling better would be great.

What do I do next? Please if anybody has any advice it is more than appreciated.

Thankyou so much for reading.

Mrs M

 

[Katharine]

Welcome back Mrs M,

I'm very sorry to hear that you are no further on your way to answers. It is terribly frustrating!

I haven't taken the time to go back through your posts (and my memory's shot) but I am presuming that people have already suggested perhaps trying to see another rheumy? I don't know if the person you are seeing is specialised in auto-immune diseases? Many rheumies are not. I'm sure you know that you can post here in the "find the doctor" section for recommendations if you think that is an option.

I'm wondering if you might consider the option of paying for a private appointment at the London Lupus Centre? I know that the cost of a private appointment might be a problem but a few people here have found that cost (and the travelling) well worthwhile. Once you have had an appointment, I think it is usually possible to then go through the NHS. I believe they are also very good at not going overboard on tests etc if they know that money is a problem for you. Maybe some members who have been there can confirm this for us.

Do you have a good GP backing you up on all this? I would say that your GP is also a very important part of all this. If he/she is at the head of "we don't know what's wrong so we'll tell you it's nothing" then that is going to seriously hinder you getting results.

Fibromyalgia is a very real diagnosis but, as you say, it doesn't appear as if it would explain all your symptoms. It is also (most unfortunately) used by some docs as a sort of basket diagnosis when they don't know what to say. I have had it thrown at me once or twice depsite knowing very well that I don't have fibro (Note that it can co-exist with things like lupus and up to 30% of lupus patients also suffer from fibro). In order to have a correct fibro diagnosis, you must test positive to pain in a number of defined pressure points on your body. I'm wondering if this has been done for you?

Here's a link about fibro diagnosis
http://www.fibromyalgia-symptoms.org/fibromyalgia_diagnosis.html

sorry I can't help more,
Katharine

 

[debatat]

Hi Mrs M

Sorry to read that you are having a difficult time. It sounds as if you are getting more help from your dermy. What blood tests did your dermy do? When do you go back for the results? Did your rheumy offer you treatment for the fibro? Have you been tested for Aps?

Sorry I am asking more questions than offering help!! Katherine has given good advice. I have been to London Bridge and it was well worth the time and money. Keep a note of all symptoms and get copies of blood test results.

Hope that you feel better soon.

Deb

 

[onetay]

Mrs. M,
It sounds like you have been through a lot in the past couple of years and it is time to get to the bottom of things. Have you out right asked your rhuemy what he thinks is going on because you can not and will not keep going through all of this? Sometimes a little push is all they need. I would ask your rhuemy why he does not think it is not connective tissue disorder. That sounds more likely than what he is putting out there which by the way sounds like nothing so far. Well, I am sorry for the rant and wish you the very best to find an answer as well all need that. I hope you feel better soon.

 

[Mrs M]

Thankyou for your input!

Hi Katharine my GP straight away a year ago suggested I go to the rheumy as he suspected Lupus ( little did I know what lupus was back then!) I tried getting an appointment with him yesterday but he's on hols so will see him when he gets back. Also rheumy who said yesterday it's not lupus on first visit to him a year ago said lupus but because bloods aren't showing it then he simply dismisses my signs and symptoms. Just to say Katharine I did test positive to the pressure points for fibro around 7 months ago but they thought more was going on so didn't want to put fibro just then.


Hi Deb the dermy team definitely do seem to be trying but I'm just worried that after yesterdays appointment with the rheumies that they will back off now? Fibro I need to do physio and no I've not been tested for Aps.Dermy tested for cryoglobulins to see if I had cryoglobulinemia and tested for mevalonic acid in a urine sample that was checking for acrocyonosis? They believe that I was showing signs of a CTD. Should get results tomorrow fingers crossed.

Thankyou Tammy and I think maybe the direct approach is going to be needed in future!!!

Once again a big thanks for your support XX

Mrs M

 

[debatat]

Hi Mrs M

I hope that you get answers tomorrow from your test results. Let us know how you get on. It sounds as though your dermy is a good one and has spotted something that your rheumt hasnt, so is unlikely to give up. There are others on this site who have been diagnosed through a dermy.

Dont giveup!!

Deb

 

[Lily]

Hi Mrs. M,

I hope that you can find another Rheumy who will try and help you sort this out.

I had a quick look through your past posts, I'm just wondering if anyone has done a Shirmers filter paper eye test on you? Opthamologists can do them and other tests to check for dry eye. It was an accidental discovery for me but helpful because at that time my bloods were negative.

love
Lily

 

[Mrs M]

Hi Guys

Dermy department couldn't give me my results as they aren't all back apparantly? I just feel that after mondays meeting with rheumy the dermy may well be listening to him and won't divulge my test results just yet? I'm sure that as the patient I am entitled to have a copy of the results!

Thanks Lily about mentioning the shirmers test. I have phoned the opticians and explained that I would like an eye test along with the test you mentioned and I am booked in for next Thursday th 5th March. Will let you know the outcome.

Without you guys suggesting things I just wouldn't know what move to make next so thankyou.

Mrs M

 

[lazylegs]

Some tests do take longer than others to get back. I suggest waiting a few more days and call the dermatologists office back for the results. Once the results are in you are entitled to copies.

Good luck on the 5th.

Take care,
Lazylegs

 

[Lily]

Hi again,

I too would chase up the Dermy once you give it a bit more time. Biopsies would probably take longer than average to come back as far as tests go.

Good for you on getting the eyes checked. Along with the Shirmers test there is another one called a Rose Bengal staining test. Not sure if your Optician would be set up for this. I know the system is different over there, here I have to see an eye disease doc called an Opthamologist.

Good luck and let us know how you get along.

love
Lily

 

[Mrs M]

Thought I'd just update you and maybe get more advice please...

Just got off the phone to the dermy and he says that my bloods have all come back normal now? I asked about the biopsy on my toes that he was supposed to be booking me an appointment for but he seemed suprised that I still want it doing??? Why on earth did he not book it two weeks ago when we spoke.(more time wasting)

Went for a CT scan on Tuesday that turned out to be a nightmare to say the least. Drank the gastrografin solution the night before and then at the appointment I had to drink more. I had got down to my last cup of the horrid drink when bang I came out in a terrible rash and started to feel unwell. They got a doctor to me who said I must stop drinking the solution and that I wouldn't be able to have the CT because if I'd had this reaction to the oral then the contrast would be much worse and none of the staff would be willing to take a risk They continued to keep an eye on me for several hours before they would let me go home. They checked my BP and pulse which was slightly raised and I couldn't stop shaking. Does anybody know what this could have been down to or is it just another episode of my weird and wonderful symptoms?

Oh my I really don't know what to do next. I really know my own body and that I feel so unwell and I seemed to have been dumped :worried: by the medical people. How do I get answers if nobody is listening. I understand things are hard to diagnose and they have to be careful about prescribing meds without a diagnosis but just to be able to get out of bed and feel well would just be the best feeling ever. It's been so long since I felt myself and I don't know where or what to do next. If anyone of you out there has been here and come through the other end I would love to know how you managed it. I really feel I'm losing the strength to bother with the docs anymore.:worried:

Mrs M

Sorry for the rant and my gloomy mood.xx

 

[lazylegs]

Hi Mrs. M,

It sounds to me like you had an allergic reaction to the gastrografin solution. Since the contrast used in the IV is known to cause allergic reactions I can see why they decided not to continue with the scan.

I was once where you are and successfully came out the other side. I went to doctor after doctor with symptoms. Nobody could figure out a cause. I even gave up a few times but as the symptoms increased I ended up trying to find an answer again. I had one neurologist say it was all in my head and declined to run a test because it was painful and probably wouldn't show anything anyway. Had he run the test I would have been diagnosed years ahead of when I actually was. It took me finally collapsing in a heap and being totally unaware of what was happening, a shadow on my lung and low blood pressure to get a doctor to sit up and say something was definitely happening.

I totally understand your frustration. Don't give up though. You know your body and know when something is not right. In the meantime we will be here for you.

Take care,
Lazylegs

 

[Mrs M]

Thankyou Lazylegs

It really does mean so much to know you are there and that you understand. I will really try to stay positive and to continue to try and get answers.

Mrs M x

 

[LolaLola]

Dear Mrs. M, It is possible to have Lupus AND Fibro. A number of us do.
Katharine is perfectly correct that some Docs use a Fibro diagnosis as an excuse not to look any further.

London Lupus Centre is very good. I am usually NHS but sometimes top up with a Private appt. I can personally recommend Prof. Hughes, Dr. D'Cruz and Dr. Edwards. If you are on a tight budget I would urge you to be honest with them as they will be very fair with you. They do not order unnecessary tests, which is good news as the bloods can be the most expensive thing.

Keep your chin up,
x Lola

 

[Mrs M]

Hi Lola

Thankyou for your kind words.
Hope you are well.

Mrs M x

 

[pollianna]

Mrs M, all of this is so familiar to me and I am sure many others here. I was sent to a Neurologist when perhaps I should have gone to a rheumy. I got the fibro label which I have never ever thought I had. I knew something else was going on and so do you....You have to take this time and find the last little bit of strength not to give up.

I would take the bloods and sit down and write a letter to the derm and the rheumy with your GP if he/she is good if I were you. If your RF is significantly raised then that is not fibro!! Sometimes they need to hear both from an independent source

Would your GP be willing to ask the specialists to try you on an antimalarial/treat you for auto immunity and see how you fare? If you have some symptoms then surely that's justified?

 

[Mrs M]

Hi everyone

Quick update. Rheumy sent an appointment for August but it seems that my GP is trying to fight my corner and I had a call from rheumys office to say that they will see me this Friday instead. I hope that I can be strong and fight my case with him.

I have a skin biopsy on my toe tomorrow so fingers crossed!

Mrs M x

Pollianna I will certainly have words with GP after I've seen rheumy and see what's said. It makes me laugh to think that I was refered to a rheumy 13 months ago and GP said that they would probably have to give me meds so to give me a better quality of life! Well here I am still waiting.

 

[pollianna]

I know, waited 6 months from forst seeing the rheumy to getting the goods You will get there, your almost at the home stretch now. Your GP sounds great



This Fibro as a primary diagnosis drives me nuts

 

[lazylegs]

Good luck with your appointment on Friday with the rheumatologist. Let us know how it goes.

Take care,
Lazylegs

 

[Lupo30]

Mrs M,

Definitely let us know. Don't give up. Ask your rheumy about primary Sjogren's? It would definitely fit in with your raised RF. Have you had your immunoglobulins checked? Good luck with your optician's appointment as well, they will be able to tell you whether your eyes look dry and then you could see your gp about being referred to an ophthamologist. I would however get another rheumatology opinion also though.

Love Lupo30 x