Advice needed

Hi all,

I feel a bit of a fraud posting on here and asking for advice but I am at my wits end and don’t which way to turn. I have been pestering my GP for nearly 12mths now and no further forward. I had a fall down the stairs last February and since then, had terrible vertigo that didn’t respond to any of the medication my GP prescribed. She referred me to a neurlogist after seeing me face to face and confirming I had a weakness down my right hand side and my right hand will shake. My speech is slurred at times and I crab walk to my right. The neurologist refused to see me, saying that previous traumatic experiences were the cause of it even though I hadn’t even spoke to them! My GP then adopted the same opinion. In desperation, I called Headway and asked for advice. They were very helpful and gave me information to present to my GP. I decided to pay private and saw an ENT consultant who diagnosed visual vertigo but he told me the other symptoms didn’t relate to this and for me to continue to pursue this with my GP. She did manage to get me an appointment with a neurologist and I had a telephone consultation with him. He was very nice and listened to me. He prescribed Neupro patches, starting at 1mg and then 2 weeks later, increase to 2mg. I was supposed to be seeing him on Christmas Eve but the appointment was cancellled and a new one made with a different neurologist. I had a telephone consulation with her last Sunday. The call last for 6mins and she didn’t seem to be interested in the symptoms. I have had a CAT scan after the fall which showed there was deterioration to the grey matter. I have also had an MRI scan and a DATscan and both have come back normal. Due to this, the neurologist has taken me off the neupro patches. I was okay at first but have felt so poorly since. I didn’t realise how much they actually helped. It feels like the symptoms have hit me hard since.

I have had a lot of bangs to my head of the years. One was 6 years ago now. I ended up with 2 black eyes from just one bang to the head. 2 days after this, I had awful vertigo but this responded to the treatment my GP gave me and although I have had balance issues since, I was able to carry on as normal. Over the course of the last 3 years, I have noticed a lack of grip in my right hand. I was a mechanic before going into education. I am also a drummer so this was something I noticed straight away but thought nothing of it. My co-ordination has steadily got worse over the years but again, I have managed okay and didn’t feel the need to speak to my GP about it, even when I had pins and needles several times every day.

I noticed my little finger on my right hand starting to shake 2 years ago. My hand and forearm now shake and it’s noticeable. My speech is slurred most of the time and I think this is made worse because it feels like I have forgotten to swallow. I sometimes dribble out of my mouth when I talk which is embarrassing. My limbs feel heavy and I have started to walk with my knees bent. I must be dragging my right leg as I have noticed my shoes are wearing down more on the right shoe. My memory is shocking. I can be talking and then suddenly forget what I was saying. I forget something is on the hob and to add insult to injury, I can’t smell the burning so only get alerted to this when the alarms go off and my dogs go wild. I can be talking to someone and know what I want to say but the wrong word comes out. I have noticed if I use my right hand that the shaking will subside so even when in work, if the shaking starts, I will tape the table or anything that’s close and count drum notes. When driving, I will tap the steering wheel to control it. The main problem is at night. It seems to get worse then when I am trying to sleep. It feels like my upper body is vibrating inside so I toss and turn. I must be very tired as I start hallucinating. Morning’s are bad too with balance and I shuffle around for the first hour. Despite all of this, I am holding down a job in education. Since stopping the neupro patches, I feel worse. I have spoken to my GP and she has said she doesn’t know how to help me. An appointment has come through to nee the neurologist in April. I shouldn’t feel like this as I have a fantastic partner and son and close friends but I feel alone. I feel embarrassed and like I can’t cope no more. I know I don’t have Parkinson’s as the DATscan would have confirmed this. I haven’t goggled any of my symptoms as I don’t like doing this and I can’t be telling my learners to not do it and then do it myself. A colleague of mine suggested I make contact with you guys as I was speaking to him about being taken off the neupro patches and how I feel worse now. He said that even though I haven’t been diagnosed with Parkinson’s, that maybe you could advice me on how to manage some of the symptoms. He said he knew a bit about the condition as a relative has this and it was worth me asking a support group for help if my GP couldn’t give any advice.

I am sorry for the long message. Sorry for any spelling errors too. Unfortunately, my hands feel numb so I make some mistakes. Spellcheck is a God send!

Hi and welcome to the forum @Bongobex. I’m so sorry you are going through this worrying and frustrating experience. Mistakes are understandable under the circumstances, just keep writing - we’re here to listen. I hope that others on the forum will be able to talk to you soon and give you some support.

Only a doctor can diagnose you and it sounds as if yours is doing what they can to get some answers for you. April must seem a long way off, but there’s no reason you can’t ask to see your doctor again if you need reassurance while you wait. Anxiety tends to worsen symptoms and you can also consider relaxation exercises to help you right now. As for not wanting to use Google to look up symptoms, this is your choice, but our website does have some good information that could be helpful to you. You could start with this page and explore from there. We also have a helpline with advisers. You can call them on 0808 800 0303 to discuss your concerns.

Take care,
Forum Moderation Team

Hello Bongobex
Well you have certainly been going through the mill. I have to admit that I don’t really know what to say that might help, although I hope Janice’s reply will at least give you a few starting points. Although time does seem to fly by these days and we’re no sooner at the beginning of the month when we find ourselves at the end, I expect that for you April might as well be a 100 years away. It may be worth doing a little planning for your appointment ie think about and write down any questions you may have so you don’t forget anything and maybe keep some kind of journal or diary - the aim being to become aware of your specific symptoms - what happened, when, how did you feel etc., to see if a pattern emerges, or maybe you will identify some triggers. I’m not suggesting anything massively over complicated rather home in on specific things such as your morning or night time routine. You might choose to make notes every day for a week or just note that this morning you got up in a bad mood. Whatever suits you. It can be surprisingly informative and if nothing else it will pass a bit of time. I will say here that although I know this to be a useful tool, it doesn’t suit me. I have tried it several times over the years but find it boring and my heart really isn’t in it so I don’t bother anymore. So it’s absolutely fine if it’s not for you but there are many who find it to be a useful exercise.

The time will pass and April will come and I really do hope it brings you some answers.
Take care and you’re not on your own with the forum in your corner - you may not have Parkinson’s but you are most welcome anyway. Do let us know how you’re getting on.
Best wishes

You’ve given a history of symptoms typical of PD.Dat scans can be normalI think term used to describe this is SWED Be persistent You haven’t actually been seen the neuro never had a visual of you or examined you this is not good practice insist on seeing someone make a nuisance of yourself