Trying to get a diagnoses

[MrsAristotle]

I have been ill now for 2 years continually with peripheal neuropathy, sensory, aching and weakness in legs and now arms. I have had MRI and VEP and recently had another MRI of the spine as i have been having problems with my hands, weird nettle rash sensations, cutting pains in my left thumb, pins and needles aching in elbow, weakness in arms and terrible pains in neck. I was told by my doctor that neuro has found high signals in the T1 and I saw him on Monday, and again we dont seem to be getting anywhere.

Basically my VEP came back positive. All my clinical tests are positive etc, my first MRI showed a cluster of high signal foci in the deep white matter of my brain, but inconsluve to demylination etc.

My GP believes I have MS, my therapist believes it is MS, the doctor who assessed me for money believes it is MS.

My neuro tells me that he is giving me a working diagnoses for now of Myelitis. I have an open appointment to see him in 6 months, and if my symptoms in my arms etc worsen I am to contact him and we will then go for a LP and possible a course of steriods.

Now he tells me candidly that he is confused about an MS diagnoses (he hasnt ruled it out), as I dont seem to have had multiple episodes. The main symptoms started september 11th 2006 when I couldnt get out of bed and walk, and a hot bath made it worse and basically I have been ill ever since. When I saw him first my left leg was totally without feeling and he was sticking pins in me and I couldnt feel them.

Well the problem is, I cant seem to get through to him that I can pinpoint a timeline where I definately had MS type symptoms.

32 years old. Pins and needles in arms and hand for over 6 months which just disappeared.
34 years old. Suspected sciatica as had pins and needles in right hip and leg, but nothing showed up on xray. Disappeared after about 4 months.
Several years later, what was supposed to be frozen shoulder. Had terrible pain in my neck and arm lasted a few months, then went.
Problems with bladder.
Roughly 8 years ago, lost the sight in one eye whilst in brazil on holiday, lasted only a few minutes. When i got home it was hot and july and it happened again. The doctor at the time said it could have just been low blood pressure, never checked it though. From then had terrible pain in my left eye on and off for weeks really bad pain. Went like it came.
Clusters of weird things, balance off kilter, dropping things, sharp pains in arms, neck, fatique, bladder problems, electric shocks, this went on for several years on and off, got fed up with going to doctor. Had pains in my ribs like shingles as the pain was across the nerve endings and nearly drove me to distraction. Had overall 2 scans on my liver NOTHING.
5 years ago had terrible bladder problems and again pains in my legs, arms, thought I had UTI, ended up taking 6 different lots of antibiotics. Collapsed with weird vertigo feeling and was signed off work with anxiety type illness (not what i BELIEVED). Had terrible time with fatique, pains, bladder etc, took 6 months to get back to work.
3 years ago started to experience pins and needles in my legs, would have problems with walking at times, and would have to ring colleague to take me to work as couldnt drive, basically couldnt feel my legs sometimes. Fatique set in especially around 3pm.
2 years ago the heat was unbearable in my office over 30 degrees and would constantly feel off balance, was always falling to the right and hitting filing cabinets, loosing balance, aching in legs and feet.
Then 11September and since then have had MS symptoms which have been ongoing and progressively worsening.

It doesnt matter if i did the garden or lie on the settee it makes no different to my pains, it doesnt give me a backache, as I just constantly ache anyway. Somedays just stay in bed. Other days feel a lot better just like the eye of the storm when everthing goes quiet and I feel almost normal.

Now couldnt all the above have been cluster episodes of MS?  

It all seemed to start when I had my hysterectomy I had terrible endometriosis and in the end had to have full hysterectomy and was so ill had to have 2 pints blood transfusion.

Oh yes i have lived abroad most of my life, africa, hongkong, thailand etc and had many inoculations. Did have hepititis when i was 7. Thought to have had meningitis when I was 11 but not confirmed when I lived in Malta.

I dont know whether to push this timeline with my neuro or just wait and see what happens. I just want to know what is wrong with me. However, did mention to him, but everytime i see him again he forgets and we dont have enough time on appointments to go through it AGAIN. This appointment he was nearly 2 hours late, and i was just rushed through.

It is no joke when you have pins and needles from your left breast, down your back, left leg, and feet, and then cant hold your bladder.

Oh yes i have the usual stuff, brain dippy, dyslexic typing, memory but not so bad mostly poor concentration thats why i cant work anymore cant seem to put things together, and no point in asking me to make anything as I cant seem to work things out anymore bizarre LOL.

Any advise would be gratefully received.

Oh yes I did have one positive blood for Lupus, but this has not been followed up, my neuro refuses to send me to rheumatologist as he is convinced it is all neurological.

Father had Lupus and cryoglobenima, peripheal neuropathy, and grand father had peripheal neuoropathy and finally diagnosed with parkinsons disease.

???? Confused Maria

[crwstar]

So sorry to hear all you've gone thru. Have you gone for a second opinion?

[MrsAristotle]

any comments on the above would appreciate some advise. thanks