GP Campaign (the second assault)

[adrian_holland]

Right!!

Dusted down, organised (for once), and determined (if not for a diagnosis, then at least some treatment).

Tomorrow I am off to the GP, to try to force his hand to refer me to the renowned Dr D Cruz. The first assault took the form of a 3 month health diary to throw some light on my symptoms and what had been happening to me. Although I feel that the detail and point of the message somehow became lost in the reading I did manage to convince him to send me to Chapel Allerton, which was my choice at the time as it seemed to be my best local(ish) option, and given the way that I was feeling at the time, my bloods (I thought) would surely corroborate the physical evidence. The first appointment was a very supportive and positive experience with bloods taken and a follow-up booked. My despair was compounded when at my second, my bloods were negative and the possibility of a diagnosis or meaning treatment was displaced out-of-hand.

Back to the daily grind of self doubt and scatter gun referrals from one specialist to another seemed the only way. All the while gradually but evermore noticeably getting worse.

BUT NO!!! I, and my loved ones have had little respite in 18 months of this flair from which I seem incapable of pulling myself out of for more than a couple of days. I seem to spend 12 days recuperating to enable me to spend 2 meaningful days with my daughter, only to be laid up for 2 days after her visits. All the while being passed from pillar to post.

ENOUGH IS WELL AND TRULY ENOUGH!!!

This time I am going to strip it down, simplify it to the bare bones and by doing so, and setting about my task with the same grit and determination as last I am hoping to fin the experience less exhausting, and should I hope conserve enough energy to remain resolute throughout. For this purpose I am preparing a simple list (see below) of my symptoms, grouped together as best that I can, and I am simply going to return to the list during any consultations until every single one of them has been dealt with and treated, or I have been referred to somebody (anybody) who can explain and treat the whole.

Physical (Top to Bottom)

* Eyes

+ Dry eye n both eyes

+ Fogging in both eyes (left more severe and frequent)

+ Frequent and extremely well defined floaters in both (especially in low light)

+ Onset of Glaucoma in left eye (currently being treated with Latanaprost)

* Joints

+ Stiffness, pain and swelling to shoulders, elbows, wrists, fingers, hips (presents as constant groin-strain and gripping pressure to sides), knees and ankles (Currently treated by steroid injections to individual joints and pain controlled by Tramadol)

+ Cold Finger

+ Dry cracking/splitting skin (treated with Diprobase)

* Gastro

+ Abdominal discomfort (General)

+ Intense rolling on digestion (General)

+ Intense sharp puncturing and linear to lower right

+ Uncontrollable, irregular and inconsistent bowel movement

+ Incontinence

+ Regular urinary infection

+ Acid re-flux (treated with Omeprazole)

* Epidermal

+ Mallard rash

+ photosensitive rash

+ Perianal, Pilonidal,Random Subcutaneous fistula, (currently controlled by Lymecycline)

Bloods

+ Vitamin B, Low (treated with Concentrated supplement)

* BP

+ Rapid drops in 'at rest' BP during sleep

Neuro

+ Sleep apnia

+ Fatgue

+ Headach, both constant general low level and frequent localised extreme level (treated with Paraceamol)

+ Scalp sensitivity, localised

+ Flashing lights with eyes closed

+ Vertigo extreme and worsening causing imbalance and falling

+ Agra phobia causing peripheral vision nausea

+ Claustrophobia causing peripheral vision nausea

+ facial tic

+ Restless hands and feet

+ Intermittent shaking

+ Hand tic

+ Low concentration/attention

+ Warmth joint shaking and weakness to legs and upper arms

+ Cramp, hands, calves, and toes

+ Constant low level tinnitus, occasion high level

+ Effective speech, mumbling, stammering and confusing words

+ Itchiness

Psycho

+ Mood swings and irritability

+ Depression

+ Anxiety

+ Apathy

Well that SHORT list seems to be about it, if I have missed anything or any of you have any thoughts about how I should present myself then please (as they say) do not hesitate.

Be Healthy, Ade

[lupus-support1 Administrator]

I do think you are right in asking to see Dr David D'Cruz.

One of the difficulties in diagnosing SLE (and I am not diagnosing you in any way as I am not a medical doctor) is that there are patients who are "sero-negative" ie standard blood tests, including ANA, are negative. However, there are people walking around with no health issues who do have a "positive" ANA!

Diagnosis is made clinically. At the LuPUS Message Board you can read a paper written by Dr Graham RV Hughes, some years ago, helping doctors to look for and diagnosis lupus. It is called "Is it lupus" The St Thomas' (Hospital) 'Alternativer Criteria'" and can be read here: lupus-support.org/LuPUSMB/i...

Don't expect an immediate diagnosis!

With good wishes,

Ros

[Whathappned]

Hi

Just wondering how things went? I wish I had seen this earlier as I just thought you should of asked for a double appointment.

In my view the Gp is under pressure in their 10 minute appointment and you really needed time to keep reiterating your symptoms. They work in such a way that sometimes they don't get what your saying and to be honest until you have this type of disease no one really don't understands.

Look back, and we where just the same. It's really hard to get the problem/s understood. It's really easy to have a blasé Attitude to these symptoms.

Until Lupus and associated illnesses are in the news as much as cancer there will be limited understanding even from medicine and nursing professions. Everyone needs educating!!!