[purplesnowflake]

Hello. I do nt know if I should be here as I'm undiagnosed but I've been battling with something for 7 years but doctor just shrug their shoulders or make me feel like a hydrochondriac.
My symptoms are:
major headaches
muscle weakness so my legs decide to have a mind of their own.
joint pain
bursitis in hips
recurrent episcleritis
pins and needles in hand and feet
tremors in hand if tired or having a bad day
nausea and ibs
recurrent mouth ulcers
muscle weakness in my eyes so I get blurred vision
I also have red cheeks which I've had since I was 18.

I used to have blips where I would feel terrible and then be fine but since last Feb when I wound up in hospital with a suspected stroke, all tests came back clear I seem to be struggling on a daily basis. I have recently moved and I want to get back to work but unsure whether my body will cope. It gets so tired so quick and my brain feels drunk most of the time. Any advise anyone can give would be great. I just feel trapped by my own body and I hate it. I want to be bouncy like I used to be.
I've had loads of blood tests but everything comes back clear. The only thing that has shown up is protein in my spinal fluid when I've had lumber punctures.

:worried: Sorry to moan

 

[Katharine]

Hello and :welcome:

Please don't say sorry for complaining! I think you have a right to with all you've been through.

It would be impossible to say whether your symptoms could be caused by lupus or another auto-immune disease without further investigation. Auto-immune diseases are, by their very nature, extremely complex. They also vary greatly from one person to the next.

If you take a look at the criteria and alternative criteria posted at the top of "not yet diagnosed" it might give you a better idea whether you have symptoms that match. Often there are things that we have never even considered as being connected.

You say that you have had lost of tests done. Who were they done by? The hospital? the GP? It is important as a GP may not run the very specific tests necessary to find out what's going on.

Is your GP behind you? His/Her support is invaluable in getting answers and in guiding you to a good rheumatologist. Have you already seen a rhaumatologist? or asked to be referred to one?
They are the doctors that specialise in auto-immune disorders affecting joints etc.

Also, I would want to know if you have been tested for APS or not because of that suspected stroke that you had. I presume that they did that at the time if they suspsected a stoke but you never know...

I know nothing about the protein in spinal fluid thing - I'm not very good at the techy stuff Hopefully one of the more eperienced members will be along soon to answer that one.

just some ideas, I hope it helps a bit,
Katharine

 

[The Miss]

Know how you feel

Hi Purplesnowflake , know how you feel also not sure if I should be here but like yours my body has been doing lots of wierd stuff for the last five years

- aches in my joints sometimes only one or two sometimes the lot
-constant fatigue
- blurred vision
- raynauds (unless I can seem them I am not aware I have hands and feet 80% of the time
- nailfold telangictasia (unsightly but also annoying as they constantly burst and bleed)
- abdominal pain (had my gallbladder out aged 13 , but still have attacks)
- dyspepsia
- rashes on my face , palms and scalp
- difficulties sleeping
- unexplained fevers
- unbearable PMT
- depression and anxiety attacks (at times when I dont feel remotley anxious)
- hair loss
-low iron levels
-difficulties swallowing

Have always belived that these things were random occurences but in the last two years I have been getting this weird thing were I suddenly develop extreme pain in all my joints and basically seize up and am more or less unable to move. This usually responds well to anti-inflammatories and painkillers but it got me wondering if these random occurences werent actually so random after all :worried: .

When ever Ive so much as suggested this to any of the G.P' in the past I always found them to be relativley unsupportive and feel that any tests(usually just routine bloods) they have done been in an attempt to fob me off. When these have come back negative Ive never bothered to pursue the matter and have just felt like a hypocondriact and just tried my best to manage these symptoms any way i can.

Had the latests bout of this joint thing about two weeks ago and decided that it was time to get to the bottom of this . So I hobbled to the doc's, he seemed quiet understanding and did some bloods (ANA & RF). So I left pretty pleased with myself as to date none of the other Docs Id seen had ever bothered to get that far.

Got the results back today apparently I have a weak positve result for RF and negative ANA. Doc suggested that may be a result of some sort of viral infection. My response was very good ,that can explain the instances where all my joints are effected but what about the other stuff??? His response was to tell me that he had three patients like me with lots of complaints and that there was no where he could refer us because of our none specific symptoms????? He then went on about chronic fatigue syndrome (as far as I am aware that dosent cause all the stuff I experience or does it ?) Anyway to cut a long story short he told me he'd keep prescribing me anti-immflamatories / pain relieve etc and when I told him I couldnt keep taking that all the time because it irritates my stomach and makes me vomit bile he threw in a prescription of omeprazole for good measure :lol: . Shouldn't be to hard on the guy, because actually he's been one of the better Doctors Ive seen.

Anyway he's gonna repeat the RF in a couple of months and depending on the results he said we will go from there but that was only because I looked like I might burst in to tears by the end of the appointment.

Am supposed to see a dermatologist on monday with regards to my skin complaints so maybe at least I will get thoose sorted.

Sorry for the long post ,but really am at my wits end with all this stuff :worried:

 

[Katharine]

Hello the Miss,

Just a quick note on the dermaotologist appointment.

That might well lead to you getting a skin biopsy done. that can be extremely helpful when the bloodwork isn't pointing to anything specific. I was having the same sort of conversations with my doc last year as I didn't have much showing up in bloodwork. However, having the malar rash on my face made the rheumy send me to a dermy and that's how I got dianosed. The skin biopsy came back strongly positive for SLE. Obviously it's not the case for everyone but basically it means - Don't give up!!

Apart from that, how about starting a thread of your own to introduce yourself - You'll get lost otherwise

bye for now,
Katharine

 

[The Miss]

Thanks for the advice Katherine ,I dont hold high hopes because this Doc I am seeing on monday is a General Practioner at my surgery whos specialism is Dermatology, Ive never seen him with regards to anything skin related so who know's he may suprise me but having seen previously with regards to pain fatigue etc he's been pretty unsympathetic.

Thanks for the encouragement , and will defo start my own thread!

 

[Lily]

Hi purplesnowflake,

I'm sorry you have so many health problems that they seem to be having trouble working out.

Were your lumbar punctures done under the guidance of a Neurologist? If so what did they say were the reasons for the protein? It's a very abnormal finding on LP's unless it was at a very low level and it was what they call a traumatic tap. You mentioned it being done more than once so the chances of it showing up more than once for no underlying reason would be pretty slim.

There are several reasons for the presence of protein in spinal fluid. Two of the many possibilities are Lupus and MS. Surely this deserves follow-up?

If you havent already seen a Rheumatologist and a Neurologist then it's definitely time to be investigated by both.

We will try and help you as much as we can, any further questions fire-away.

love
Lily

 

[keebler]

(((((Purplesnowflake))))

I am sorry you are feeling so unwell.

You have been given good advice. I just wanted to tell you we are here for you.

How is your hip feeling? I know how painful that is.

Love,
Lyn

 

[purplesnowflake]

Hi! Thank you for all your replies.
I have had 2 lumber punctures. One to rule out MS and onre to rule out a bleed in the brain. I've seen the neuro twice and the last time I saw him after amn MRI he said it's nothing serious so I'll discharge you. I'm useless at thinking in Doc surgeries so I just went on my way.
I've never seen a rhuemie but been refered to orthopedic team because my bursitsis is not clearing up with steriod jabs. My hip is feeling better though as long as I hardly move it.

Thanks again.
Take care.

 

[Lily]

Don't worry we are all like stunned mulletts, until we learn how to stick up for ourselves, and that takes practice :wink2:

I think it's time to push for a Rheumatology appointment to be investigated thoroughly for some type of autoimmune condition. Getting copies of the results of your LP and everything else that's been done will be something you can do and it will give the Rheumy a much better overall view of what's going on. Docs often dont put it all together unless we do some of the legwork, and missing some of the info they might send us on our way unless something really screams out at them.

Sending strengthening hugs, I would mention these protein findings to all and sundry, every doc I see until someone takes notice along with the other symptoms and decides that it might be a systemic type condition and these things may somehow be linked.

love
Lily