Waiting to see a neurologist again - I feel like I'm in limbo


#1

Hi everyone,

I have suspected that I might have PD since 2008, and at that time I spent quite a bit of time on this forum. But I ended up with a CFS diagnosis, even though I had symptoms that didn't really fit. I have been unable to work since December 2005.

 I have had a problem with freezing for years but my GP always ignored me when I tried to talk to him about it. As far as he was concerned I had seen a number of neurologists and there was no need for any further investigation. I stopped even trying to talk to him about this and other symptoms like increased stiffness, problems with my handwriting and some problems with balance. I have been gradually getting worse over the years, but the last few months the freezing has become worse. If I'm in the supermarket and my wife calls me from behind I struggle to turn. I have no doubt I would sometimes fall if it wasn't for the fact I use a walking stick. Turning is generally problematic. I also often get stuck when I start to walk. 

 I had to go to the doctor in January because of problem with a trapped nerve in my elbow. My usual GP wasn't available and I had to see one of his colleagues, so I took the chance to talk to her about the freezing and the other symptoms I have. I told her how I have gradually got worse over the years. She briefly examined me and said she thought I looked like I have Parkinson's and would send me to see another neurologist.

 I received a letter from the hospital about 3 weeks ago to say I'm on a waiting list to see a neurologist and they would contact me 6 weeks before the appointment. It looks like I could wait months before I'm seen. In the meantime I'm back in limbo again. I know the speed of diagnosis isn't important in terms of the effectiveness of treatment, and had no baring on the progression if it is PD I have, but I still feel a bit lost again.

 I pushed so hard to get a diagnosis in the beginning and gave up even trying as the constant pushing was just too much for me, especially after I lost my son. Added to that the more I pushed, the less they seemed to believe me. I am hoping this will be the end of 8 years of uncertainty, although there is no guarantee. I don't want to have PD, but if I have it I would like to know and get treatment. At the moment I'm capable of doing so little and I'm hoping if it is PD and I get treated I might get some of my mobility back. I just hope the  appointment to see a neurologists comes sooner rather than later.

 


#2

Hi Paul318, thanks for the update since you last posted a month ago. It must be very hard to be kept waiting. Here's hoping for a swift appt and a clear and quick dx. Uncertainty is no help.

Best wishes

Semele


#3

Thank you Semele,

  


#4

'I have had a problem with freezing for years but my GP always ignored me when I tried to talk to him about it. '

 I am incandescent with indignation on your behalf. Freezing is hardly a minor symptom. There should be NHS Death Squads to deal with GPs like that.


#5

I do take some of the responsibility in that I didn't describe this symptom well, I told them I would 'switch off'. I didn't have the right vocabulary to describe it. In the beginning it would happen when I went to pick up a cup of coffee or something. I would start the movement and couldn't complete it for a few seconds. It was only later that I started having problems with my legs freezing. At first I hadn't even suspected Parkinson's disease as I thought it was a disease old men got.

 The other problem I've had has been down to some of symptoms that don't fit PD. I get very violent involuntary movements, where my whole upper body jolts like I've been shocked, sometime my head will turn involuntary and get held in a position for a few seconds. I'm sure this hasn't helped them. It can be so dramatic it's hard to see what else is going on. 

It also looked as if my problems had started quite suddenly, whereas in hindsight I was having things go wrong for a while but was ignoring them and had found ways of covering them up. Particularly the cognitive problems I have. I used to be a deputy manager in a residential department of a school for children with severe multiple disabilities. One of my duties was to get the drugs ready. I was finding it increasingly difficult to complete this task and got around it by delegating the job whenever possible. It would take me twice as long as it took everyone else to do it. It was only when the extreme, 'I need to lie down or fall down' type fatigue struck that things got to a place where I could no longer cope. I have since read that this type of fatigue is common in people with early onset PD and if sometimes misdiagnosed as CFS.

Back in the early '90s when I was in my early 30s I had to have a gait assessment because I was having problems with my knees. At that time the pediatrist noted my lack of arm swing on my right side. I knew nothing of the possible significance of this at the time.  

To be fair on the neurologists and doctors I've seen, I haven't had a typical presentation of PD, and I've not always remembered or realised the possible significance of some of the symptoms I was having long before the crisis where I could no longer function normally.

What I realise is that even now the past, and in particular what's been written in my notes over the years, might colour what my new neurologist sees this time round. This does make me a bit anxious, and being anxious during a consultation would not be a good thing.

 


#6

the myoclonus is interesting. i get that when falling asleep when not having enough meds. also the occasional head jerk. but a full upper body jerk is a bit unusual. mind you, if you'v had pd for years untreated who knows what you might expect. have you ever been given levadopa? if that works its probably pd if it doesnt, it probably isnt. it wouldnt do you any harm and would be useful test. its so frustrating i'm tempted to post you a couple (not really as i would get into a HEAP of trouble).

 

a fiddly task like the drugs task are enormously frustrating for pd people - not just physically but mentally sorting items is very wearisome. for me, the arm swing is the clincher. hope your next neuro is open-minded


#7

I've not tried levadopa or any other PD drugs. I do take clonazepam at night for the myoclonus. It used to be really bad at night so I take 0.5mg of clonazepam at night, which also helps with sleep. I still get myoclonus during the day, but it it can come and go. I can have a day or two without having any, but have other days when I get a lot. I think it has been this symptom more than any other that has thrown them off track. 

 I have also suffered twice from problems with my right shoulder in the last 3 years. Both times I had to have prolonged physio to free it, and both times the physiotherapist has commented on the tightness of the muscles in my upper back and neck. I have recently read that this could be significant too.

All I need is a neuro who will look at me as I am now and not put too much weight on what has been written in the past. Even a willingness to try me on levadopa would be a help. 


#8

peculiarly enough i have just been prescribed clonazepam and was about to as for opinions on its effects.


#9

I have been taking Clonazepam for about 8 years now. It hasn't given me any problems. I have found it helps me to fall asleep at night. One of it's effects is to relax muscles, so it is often given to people who get spasms, dystonia and myoclonus. 

 

 Although I usually only take 0.5mg at night, I have occasionally had to take it during the day when the myoclonus has been really bad. There have been times when I have had one after another for an hour or more. The clonazepam stops it quite quickly. I am a bit sleepy and very relaxed after taking it. 


#10

i think i will give it a go - thanks!


#11

I've got my appointment to see the neurologist next Monday, 12th May. I am hoping I get a neurologist who actually listens to me this time. I am much worse than I was when I last saw one nearly 6 years ago, but I hope when they see CFS on my notes it doesn't prejudice their judgement. I'm glad I've got the appointment but I'm a little apprehensive as I've been here many times before. I have suspected I may have PD for quite a few years now.

I don't want to have PD or any other illness, but if I have it would rather have it diagnosed and treated than struggle on with no treatment and no medical support. So strangely I'm hoping I get a clear diagnosis. 


#12

Hello, paul318 --

I'm late in reading your posts but wanted to add to turnip's responses.  Your description of symptoms is exactly in accord with PD cases I've known and has a few similarities to my own case.  If you take all the information you've posted here to your neuro appointment, I don't see how he/she could ignore the possibility of PD and get you started on treatment.

Wishing you an effective appointment with an intelligent neurologist --

J