How many times did you see your GP before being ... - Ataxia UK

Ataxia UK

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How many times did you see your GP before being referred to a neurologist?

AdeDP profile imageAdeDP39 Voters

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13 Replies
timk profile image
timkVolunteer

I took some brief information with me on my fist visit to my GP about ataxia. With my family history of ataxia, his experience of another patient who had ataxia and the result of a blood test to exclude other conditions, he was ready to refer me to the London Ataxia Centre on my second visit to him.

From what I have heard, my experience is unusual.

HarryB profile image
HarryBAdministrator

I think my situation was quite unusual as well. I didn't actually mention my symptoms to my GP. I was being treated for scoliosis at the time and mentioned my difficulties to an orthopaedic surgeon. He was very dismissive. I mentioned it a few months later to another orthopaedic surgeon who referred me directly to a neurologist. I saw the neurologist the same day and received the diagnosis of ataxia the following week. Compared to some of the stories I have heard my diagnosis was very quick.

I had always been a clumsy person since childhood. Although I knew three or four years back that my balance seemed to be worse I just ignored it. I only went to see my doctor because I was advised by my fellow employees to do so and it had nothing to do with my balance/coordination. Two of my fingers on one hand would turn chalk white whenever cold. After seeing my doctor the first time she told me I had Raynauds Phenomenon and downloaded info from the computer about the condition. I then later discovered that It was secondary and not primary Raynauds I had which was due to another underlying condition.

The second time I visited the doctor she arranged for me to see a Haematologist specialist as my b12 was low and I also had to have both CT and MRI scans done. My b12 levels were corrected but I continued to have dizzy spells and balance problems. After a full body examination the Haematologist diagnosed me as having severe Neuropathy and he himself reffered me to see a Neurologist.

After seeing the Neurologist he seemed very confused and uncertain but said in his letter that I had atrophy of the cerebellum and that I may have a degenerative component to it. The letter went on to say that he thinks I may have either an unidentified Cerebellar Ataxia or MSA.

HarryB profile image
HarryBAdministrator in reply to

Remind me Iain, do you still see a neurologist and has it been suggested that you could be referred to one of the ataxia centres?

Harriet

I'm still under the same Neurologist Harriet but I haven't seen him for a year now. No-one has mentioned yet to me about a referral to one of the ataxia centres. Even if I was, I would find it difficult to cover the costs. I also know that my Neurologist has been updated on my progress after my hospital discharge a short while ago.

AliceS profile image
AliceS

I was studying at the Royal Academy of Music (London).I found that my fingers and tongue weren't as responsive as they should have been, so after telling my teacher my worries, I was referred to the college counsellor. I went to my appointments thinking that it must be 'all in my head' and I was given antidepressants by my GP. After a year or so and having had many trips to the doctor insisting I wasn't mentally ill, I eventually managed to get referred to a geneticist (my sister has a sort of MD). The geneticist saw me, decided there was something wrong and referred me to a neurologist. Phew! At last! I was so relieved!

TimS profile image
TimS

I went to a private Neurologist. I have forgotten how I knew it was a Neurologist I needed to see, maybe my GP mentioned it.

Nigel-2112 profile image
Nigel-2112

I went to my GP about slurred speech and poor balance, mentioned that was "in" BUPA so he referred me to a Neurologist, who initially was looking for MS, he decided that I was too old to have developed FA, after six months a multiple test he sent for a second opinion at the National (Prof Wood) who did some blood tests and confirmed FA

Razzy profile image
Razzy

I took a copy of a letter from my dads genetic test to my Dr and got my appt 10 days later

laddie profile image
laddie

I saw a neurologist after a cat scan showed deteroriation of the cerebellum before this Imentioned my poor ballance to my cardiologist [not his field he said]and to a rheumatologist

who said it had nothing to do with the arthritis Because I had previously been very active physically Ifelt that it was not a sudden weakness Ifelt myself there was an underlying cause.It was 18 months before my GP referred me for a scan He was very surprised when the reults came through as he had not expected to find any problem.

wobblybee profile image
wobblybee

After complaining of the same symptoms for literally more years than I want to

remember, finally a GP passed me on to the Falls & Syncopy Dept, he said he

didn't know where else to send me. A specific test there produced alarming

results, and I had an MRI. A Neurologist confirmed cerebellar atrophy.

After many, many, many, many, many visits to my local GP and seeing different Dr`s I was finally referred to a Neurologist who diagnose my the problems

rachie1959 profile image
rachie1959

my current gp seen me once .the one before seen me about 6 times and sent me to ent who didn't diagnose me with anything my gp prescribed pills used to treat meniers then after 3yrs she left the surgery and i was seen by my current gp who stopped the pills and referred me to neurology first time i seen her .