I've recently received a letter from one of local hospitals which I had my brain and full spine MRI done at saying basically I'm on a waiting list and to wait for a call or letter with an appointment that see the neurologist . Unsure wether this letter came from my gp or the private neurologist I've already seen I rang the hospital yesterday and Apparently it came from my gp and the referral was made on the 13th sept. I was then told to be patient as the waiting time was 14 weeks for an appointment. ( I had my MRI done 3 weeks ago now) I then received a call from the hospital this morning for an appointment on the 4th oct as next week it's a nurse ran clinic only.im confused as to why it's gone from 14 weeks to 2? Could it be a bad sign ?? I've recently started having different things going on with my body so I'm glad it's not too long away though so I can mention it.
has anyone had neuro physio? I can't seem to find a single post about it...just wondered what peoples experiences of it were? did it help? I've recently started it and it seems to be making me considerabley worse...all across my upper back is agony and my 'walking' is nothing but a very slow shuffle now...I'm inclined to give up on it.
So I have my appointment. My doctor wrote that it's urgent, so I am being sent to a hospital quite far away, because the local hospitals has a 6 months plus waiting list. I'm being seen in July, the 12th. There was a closer date, but it was during one of my exams, which I can't miss.
What can I expect? This is my first appointment with a neurologist, though I have had an MRI before because about 15 years ago they thought I was epileptic. They found something on my brain then which resembles a lesion, but nothing ever came of it and I was diagnosed with type one diabetes which kind of took over.
All my symptoms after I've put down to diabetes, or over working, or whatever. (I did wrote all this in the introduction). But I am on the insulin pump now so I don't hypo all the time like I used to, but I still get dizzy spells and vertigo. And I've been tested for damage to nerves from diabetes, and my pulse and reactions and that are fine. Diabetic consultant says I haven't been diabetic long enough or had bad enough control to cause damage, and the tiny blip on my eye (one burst blood vessel) wont cause my blurry vision.
Thing is, I've been scared to tell anyone that I've been getting numbness, pins and needles, and pain, in my right arm and hand, because I was scared I would be told it's diabetic damage.
I've been seen by rheumatology because they thought I had rheumatoid arthritis, but the only thing the rheumatology people found was that I'm hypermobile. They did point out that by grip is weak, but when I pointed out my claw hand (my fingers wont straighten in my right hand unless I force them to by my other hand) they just said they didn't know what caused it and gave me some exercises to do (which make it worse).
A few years ago I was diagnosed with trigenimal neuralgia. But they did a scan of my head to look for nerves touching blood vessels and found nothing. I never got to see a specialist for that, and I didn't really push it because I decided it was probably tooth pain (it went to my forehead but I figured it was probably caused by tooth ache). My GP wasn't so sure. She's lovely, and really listened to my symptoms. All the stuff, blurry vision, hand issues etc, tends to be on my right side mostly.
I fall over a lot. Sometimes it's because I trip. Sometimes I have no clue.
I have no balance whatsoever. My husband is doing a degree is psychology and so has to do some neurology in it. He has done some of the tests onme already like getting me to stand still then close my eyes. Apparently I sway, but last week or so I actually fall over. And I can't do the putting one foot in front of the other.
Anyway, what can I expect from this first appointment? And what do I do?
Hi My name is Emma and I am 37. I have 3 children. I have been diagnosed with Fibro since 2004 and Ehlers Danlos since 2013. I have had severe symptoms, starting with double/cloudy vision since April 2014, progressing with pins and needles, numbness, bladder weakness, memory loss, falling over, and other things. getting worse, then going away and then coming back again worse.
I went to the eye emergency clinic in 2014, and was told I need to see a neurologist and they would write to the GP and ask for me to be referred. Long story short the old GP said they did not receive this and I eventually have become house bound due to the symptoms.
Before Xmas 2015 I got a copy of my medical records and there is a letter from the eye hospital to the GP asking for further investigations, I have changed GP hoping for a new start. I went there today which took a lot of effort, to be told it can take 4 weeks maybe more for medical records to come over, I have to go back next week for numerous blood tests, I now can be waiting weeks, with double vision, eye pain and the pins needles etc again.
I am looking to go the one of the hospital neurologists privately, then ask them to see meon their NHS clinic for tests/scans etc? Has anyone had experience of that?. I can afford the consultation, and maybe some tests, but I think the MRIs would be very expensive.
Or should i go to a opticians or a and e to ask to be referred, as its so hard to cope with these symptoms. Or is it only a GP that can refer to a neurologist?.
any help you can give me would be much appreciated,
Thank you Emma.
hello everyone........i havnt been diagnosed with ms..but am having test.....the one where they put the needles in your muscles !! - anyway yesterday,my legs went completley weak and shakey,litteralycouldnt bear my weight,but subsided after about 1 hour,but then felt really weak the rest of the night......and today the muscles in my thighs are so tender,like ive run a marathon,anyone had this ?
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