NEUROLOGIST

[daisy11]

The last time I saw a Neurologist was last year and a year on I have not seen anyone in Neurology - what is the norm for people with APS, TIA etc - and seeing a Neurologist - is there a plan?

[MaryF Administrator]

Hi there, I personally feel that the imput of a rheumatlogist or haematologist or preferably both, working in conjunction with GP is the best recipe, if possible, but of course not an option for everybody, However if you have one member of the medical profession who has taken the trouble to skill up on this disorder, involved in your care, that is good. Mary F x

[jessielou]

Hi hon

I've never seen a neuro, all has been handled by haematologist, a rubbish rheumy then a referral to St Thomas's who monitor yearly now, can go sooner if needed! I am currently searching for a local specialist to monitor treatments etc!

I hope someone else will be along that has more info for you hon!

Take care gentle hugs love Sheena xxxxx

[jetjetjet]

HI daisy- when i see my neuro , things we address are - migraines, vision problems , memory loss, brain cramps, white matter in brain { tia's- m.s.] also associated with these ,of wich i dont have . last appt no new white matter {lesions } no larger. no crowning . fluid around brain equal- these are the things we cover - last appt. great - i see her once a year providing no problems occur.she was very good about learning of our problems ,matter of fact alot of the info i brought to her came from this site -- study's and personal plights of our members that share the same symtoms as i. i like my visits with her as she learns more every time. she is a good listener, an one of my doc's that realizes they can learn from us . i think thats very important - to me anyways ---------------------------------------------------------- jet - what do you think Daisy??

[sangje in reply to jetjetjet]

Hi

That sounds very good jet - at least to know whats possible. I was interested in what you term as 'brain cramps'. Would that be headaches or the sort of fog/wordfinding problems we often get or something else again ?

sanj

[jetjetjet in reply to sangje]

Good morning sangje- when i reffer to brain cramps , its a simple naheetc. not really total memory loss if you know what i mean ?some times it will come to me, sometimes not . kinda luck of the draw. with the memory loss it,s on a much larger scale i never had headaches before my a.p.s. in aug.2009. and i was a drinker back then, never hang overs either. now i will get migraines that are severe - no light -noise- even motion like trying to stand ! but they usually occur when inr is way to high or low as the dc's have never been able to stabilize me - i test every 3 days and can go from a 1 .7-- to 4.6 . been as high as 6.7 but that usually lands me in the E.R. and on the lovenox , till i come down and they have never used vit. K to bring me down of fear of plumeting to low. thats just my wacko system. ---------------------jet

[viv112]

Hi You will be referred to see a Neurologist by a GP or other consultant if you have symptoms that need to be investigated by a Neurologist. I get numbness in my fingers and toes and my GP thought I might have carpal tunnel syndrome. I do not have this but I was referred on for nerve conduction tests in my hands and feet and after the results I was diagnosed with peripheral neuropathy. I also get electric shock type nerve pains periodically. The neurologist will order blood tests to discover a cause for the neuropathy eg. diabetes, but if there is no known cause it is considered to be idiopathic peripheral neuropathy. This is common in people with autoimmune conditions like APS. There is no ‘cure’ and you learn to live with it, eg. not wearing tight shoes. If you get bad nerve pain there are medicines that the doctor can prescribe like gabapentin but they need to be taken all the time and have side effects, so they only recommend you to take them if the pain significantly harms your quality of life.

[lucky1]

I saw all my specialists whilst in hospital and in the recovery processes during the first few years of a major stroke. The last 10 years has been with my local GP

[GinaD]

Go with whichever doctor believes you and does not think you're crazy!!!!!! .

[sweett]

Hi guys,,i have APS, iv had a really bad time with migrains and to the point where iv ended up at a&e and iv all sorts of aches and pains, iv been to my docs and told her about memory loss and brain fog,, she just prints of sheets of paper with symptoms of APS hands it to me and sends me on my way instead of saying what i might expect to be feeling or at least make out that she understands what im going threw,, its so upsetting when i walk out of a doctors surgey worse than i walked in. x

[Mommaleda in reply to sweett]

Well, that's very similar to my experiences. I went to a Neuro after having strokes. Later, I was released to my GP. In the recent months, I've experienced multiple flairs, which included dizziness, miagraines, numbness etc. this was my GP's reasoning for the referral to the neuro this time. Hopefully, we will find out some answers! I hope this helps

Xx to all

[mhokeness]

I see my neurologist twice a year. I had cerebral vasculitis with the onset of my APS and he was part of the team in getting to a diagnosis. He keeps close tabs on changes in the brain with an MRI every two years. I see my rheumatolgist every three months. He is the one who actually ran the tests and came up with the APS diagnosis. I know I am lucky to have this team of doctors who care so much. I dread the day they decide to retire. My GP told me from the start she wasn't too familiar with APS, but was willing to learn and work with my other doctors.

The thing I fear is emergency rooms. They just don't listen to you. Twice when I was having a TIA they said it was a migraine. I need to get everything documented and carry it on an ICE Medical card. Mine just has the basics on it.

Margaret

[slkm in reply to mhokeness]

Margaret If you dont mind canyiu share he neuro yih see as I desp need to see a good one

[Lure2 in reply to slkm]

Hi there,

You have now answered a 4 year old question! If you have got APS please put your own question as you will have more and better answers. We have found on this site that the Neurologists do not "get" what this illness APS is about - too thick blood that has to be thinned.

A Rheumatologist or a Hematologist are the types of Doctors who may understand this illness but they must also be Experts on this special one!!

Best wishes from Kerstin in Stockholm

[mhokeness in reply to slkm]

I'm sorry to say that he had a stroke and has retired. I'm looking for a new one now. I'll let you know when I find a new one.

[daisy11]

the info is brilliant, I shall ask Wednesday when I go to see my Heptologist as believe it or not, they are one's that get things going. When I was supposed to have had a MRI shortly after having a TIA, which did not happen due to the Haem dept, they stepped in and said they would request immediately yet was told by Haem that they were going to do it. I have found that since being referred the Haem do not get so much involved. My GP is brilliant though and is there should I want to speak to her. Since having a procedure and haemorrghing in hospital about 3 weeks ago, my INR went low and now it is slowly getting to my ideal range about 3.7. However along the way my head has been dizzy, sludgy etc. Along with this I have been getting low sugars, so it has been quite an eventful few weeks. Reading the information regarding blood pressure tabs it says can cause Lo sugars. my bag is filled with glucose tabs, etc. Last week went to open day at university for daughter and because I was having a funny turn in the toilets - this I put down to low sugars my husband was panicking thinking I was having a mini tia.!!!

[SharontheSheep]

Hi I have to say that my neurologist is amazing. I met her a couple of months ago after years of "it's only migraine" and a number of other problems such as losing the ability to judge the speed I was traveling in the car or the distance from other cars- spacial awareness just left me. I had a number of trancelike episodes when out and then developed a fears of going anywhere because lights and noise caused me such pain and mental confusion. She listened, took my history, has arranged for me to see other specialists as she wants to relieve my brain of any stresses. She has diagnosed me with visual vertigo and has a treatment plan for me. Unlike with some other specialists she made me feel totally supported. I also saw some wonderful doctors in a memory centre who gave me tools and strategies for coping with my short term memory difficulties.

My neuro is Dr Victoria Williams and the Memory clinic is headed up by Professor Kopelman. They are both based at St Thomas' Hospital and I feel so lucky to be under their care.

Things haven't improved in my health but I am confident that they will