[jiffy]

Hello


I'm Ally and I'm 44 and at my wits end (almost).

I have yet to be diagnosed with Lupus but I have a feeling that it could be on it's way. For several years I have been having arthritic problems and breathing problems that have been put down to COPD.

Anyway in August 2007 I had minor surgery and when I came round I couldn't feel my right side. Thought I had just laid funny but when I told the nursing staff they put the stockings on me and started giving me a heparin jab twice a day.

From that point onwards I had seriously lousy headaches and visual problems, so went to the optician (like you do) and he wrote to my GP and my GP had me see a neurologist.

Upshot is that as of January 11, 2008 (a date that is permanently stuck in memory) he told me that I had had a stroke......(bottom jaw hit deck at that point and I honestly took no notice whatsoever of what he said after that).

He arranged for blood tests for lupus, heart trace etc. Had them done but wasn't able to go to the next appointment cos I felt ill and he is in Dewsbury and being on a train when feeling giddy, headachey and plain lousy ain't no fun.

Saw him in Dewsbury last Friday, he saw the results...ummm'ed...arrr'ed a bit and sent me off for more lupus blood tests and another heart trace and he is arranging an angiogram too. He asked how I was doing, so I told him that in the year since I saw him last I have made a real talent of falling flat on my face & up/down stairs cos the legs refuse to behave, suffering keyboard dyslexia (I know what I want to type but it doesn't spell right), the headaches are far worse and that apart from feeling like a microwaved corpse...um well pretty rough all round really.

He has taken me off one type of medication since it didn't work and is contacting my GP to sort out a new regime to see what will work. I am set to see him again in a few weeks time.

Well I have been reading up about lupus and hughes syndrome and when looking through the symptoms, I can tick quite a few boxes as being 'that's me'.

Sometimes I hate the internet

Am I jumping to conclusions here or should I be concerned?

 

[Katharine]

Hello Jiffy and welcome

I'm sorry to hear that you have had such a tough time and all your symptoms.

It sounds like your neurologist has been looking into APS (Hughe's syndorme) but it hasn't been confirmed? Are you being treated with any blood thinners? What is the medicaton you were taken off?

It is incredibly hard to say whether you might have lupus or not, I presume that there is somethig in your bloods and your clinical examination making the doc lean towards that. Lupus and other autoimmune diseases are notoriously complex and hard to diagnose so it can be very frustrating for the patient.
APS can exist alongside lupus but can also be present by itself and the confusingly named lupus anticoagulant test is actually a test for APS.

I don't think you are jumping to any conclusions. You have something that is quite obviously wrong and you need that investigated. It sounds as if your neuro is doing that thoroughly and that means that you could be a good way to knowing what's wrong.

If we can be of any support and help, don't hesitate to ask questions,
Katharine

 

[jiffy]

Hello Katharine

I take 75mg aspirin a day have done since being told about the stroke last year.

I also get twitching in my right side of the face, especially the eye...really irritating. The medication he gave me was to try and curb the headaches, 50mg amitrypiline a night, started at 10mg and worked up over several weeks. They put me to sleep but do nothing to curb the headaches, they are more intense and last up to around 6 - 8 days at a time. The headaches don't throb, it just goes on, same intensity all the time, I can drop off to sleep with it (thanks to the meds) but next morning its still there.

I know it can be daft to start using the internet to diagnose yourself, but it's hard not to when you sit opposite the neurologist who is frowning at your blood test results and saying nothing, then having me repeat them again....along with glucose too for some reason.

My parents both died from stroke/heart trouble and a sister died from complications of myasthenia...so I guess the fog is getting a tad too thick for my liking

 

[bugsy]

Hi Ally :hello:

First of all :welcome: to the lupus site. I hope you find all the answers you are looking for to help you thru this.

I am Jo from Ossett (wakefield), 33. I was dx with lupus may 2004.

I was wondering why you have to travel all the way to Dewsbury from York, it seems a long way especially if you have to travel by train too, it must take most of the day just to attend an hospital appointment.

As you can see i live in Ossett which is next door to Dewsbury and i have to say its not the easiest hospital to get to.

I hope you get some results soon so that you know whats happening and they can also get you on the correct meds for your condition.

Good luck, take care :hug: Jo :hug:

 

[Merle]

Hi Jiffy

Best of luck with the diagnosis.

Although it may seem obvious, if a connective tissue disease is a possibility, you should see a rheumatologist, sooner rather than latter.

As my own symptoms started out as essentially neurological, I consulted a series of neurologists and had various diagnoses of MS and various other demyelinating diseases including ADEM. Two years later, I found my way to a rheumatologist via an endocrinologist [who I had asked to help my fatigue] and a diagnosis of lupus.

As the eminent physician Dr House put it: Choose your specialist - choose your diagnosis!

Take care.

Merle

 

[LolaLola]

Dear Jiffy,

If it is Lupus and/or APS there are many good treatments out there. My Daughter and I have both plus a few other bits. It can be difficult but certainly not the end of the world.

Amitriptylene is good for relaxing muscles and giving a better quality of sleep. I have never really known of it helping headaches-(just my own thoughts, others may well know better)

APS can really muddle you up, but don't worry, other people seldom notice when you get something wrong, unless like me you fall through a display of tins at the Supermarket or similar.

x Lola

 

[onetay]

Ally,
You are not jumping to anything that is how many of us on here started thinking lupus. Keep a journal of you days till the next visit so that they can see all that is going on with you and how often that it is happening. I am so sorry to learn of your stroke as those can be quite a shock for sure. When you told me how you woke up that is what first came to my mind but then I did in home health care before lupus came into my life. You should be concerned but only to the point of not knowing what else is going on. I am sure they will be putting you on a blood thinner to help with any other stroke issues that might be concerning them. You must be careful when you are on blood thinners as you can bleed out, so if you get a cut and it does not slow down get to a hopsital. It will be a time of adjustment for you and learning that you have had a stroke often does change things for people. I hope that you are feeling well and doing well. Let us know how things are going with you.

 

[orangelily]

Hi Jiffy,

I can vouch for Amitriptylene I take two at night.

 

[jiffy]

Ello again...apologies for not being around but have been running myself daft with appointments lately.

Still not had affirmative diagnoses, but have had another couple of armful's of blood taken, an echocardiogram done and just to add to the fun have also been started on Zoladex injections for endometriosis that has decided to reappear 13 years after hysterectomy. The hysterectomy came after having a son with birth defects and then miscarrying twins in the mid 1980's. Had tubes tied in 1986, hysterectomy in 1996 - but they left the batteries in (ovaries).

I really want my consultant to tell me what the 'eck is going on....feel like a lab rat at the moment. I have told him about the problems with pregnancy etc and I don't think his eyebrows could have gone up his forehead any more than they did...it was like watching someone have an 'ah-ha' moment.

Got to go see the neuro opthalmologist in Wakefield next month, he was referred in my direction by my neurologist cos I can't cope with bright sunlight or lights and my focus keeps going...dunno if that is on the same track as everything else or not, but I guess it might be.

Anyone got a new body I could borrow please?

 

[doris999]

Lets swap bodies, mine can't be any worse than your at the moment, LOL
Hugs Sandra.

 

[jiffy]

So I have now had my blood test results etc from my neurologist and makes me even more confuzzled than before.

They came back OK but he has instructed my GP to double the statins and prescribed anti-seizure medication...which I collect on Wednesday next week, I have to wean myself off amytriptlyne tween now and then since it has not helped the severe headaches as hoped.

I still feel absolutely drained of energy, my joints & muscles have the screaming abdabs if I try anything remotely like exercise..including getting dressed in the morning. I still cannot focus the eyes on anything for more than a few moments and they everything goes into a mush. The headaches are so intense and long that I rarely open my curtains cos it makes them worse.

The neurologist has pretty much discharged me into my GP's care and will see me again if any deterioration happens. I am wondering whether or not to ask the GP for a referral to a rheumatologist or if that would be a waste of time...just don't know

Oh and now I am 2 injections into a set of 6, one every 28 days, of zoladex to shut down the ovaries that I had been told were removed back in 1996 when I had a hyserectomy for severe endometiosis, so will end up having surgery later this year to get rid of them if the medication stops the bowel trouble etc caused by endo tissue strangling the bowel. Had to have a hysterectomy due to endo but had previously lost twins and had a son with birth defects...which again makes me wonder what is going on and if everything is somehow linked.

To be honest, I have gotten to the end of my teather right now

 

[lazylegs]

Definitely ask for a referral to see a rheumatologist. Your symptoms warrant further investigation.

Good luck with the anti-seizure medication. I hope it helps lessen your headaches. That pain can be so miserable.

Did you hear my gasp when I read the doctor left your ovaries in? That had to be such a shock for you. I hope the medication does the trick with the ovaries.

Take care,
Lazylegs