New to forum and waiting for diagnosis

Hi
I haven’t been diagnosed as yet, but I saw a neurologist in June and he thought PD was a possibility. I saw him privately but he said he would transfer me to NHS care (I don’t have insurance I self paid). I had an MRI via NHS in July, but got a letter for an appointment with the neurologist in November. So now I feel I am stuck in limbo waiting.

Looking back my symptoms have developed over the last 3 years. It started as a cramping in my foot when I was running, so I assumed it was a running injury. It developed into what I can describe as a painful clenching of my toes and foot, started happening when I was walking and swimming too. MY leg seems not to ‘work’ and my arm on that side is also rigid and slow, typing is difficult now.

So reading up, I think the diagnosis of PD is coming. In a way, I just want to get a diagnosis and start medication. I want to be able to walk and swim. I would like to be able run again.

But also, I don’t know what a diagnosis of PD is going to mean for the future.

I am frustrated and scared.

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Hi Kira,
Welcome to our lovely forum community. You’re soon to hear from our members, many of whom have been right where you are now, and will be happy to share their experiences and wisdom with you. We won’t ignore or downplay the challenges ahead, whatever the results of your diagnosis, but we will highlight the power of positivity and staying informed whenever possible. We have a website at Parkinsons.org.uk, and a free and confidential helpline at 0808 800 0303, staffed with amazing advisers armed with an arsenal of knowledge and resources.
Wishing you the best and with the warmest of welcomes,
Jason
Moderation Team

Hi Kira
I was diagnosed with Parkinson’s 7 years ago. And it’s scary and challenging path. But also liberally littered with funny twists and turns. You just got to keep your eyes open for them.
i only joined this forum a few weeks ago , but it has helped me not feel so alone with my symptoms. one day at a time. If i was at your stage again , I would have joined the forum sooner.
Esme x.

thanks for the replies. I think the uncertainty at the moment is the worst thing for me.

Hello Kira
It is always difficult to know what to write to someone who hasn’t had a formal diagnosis because what if it’s not? On the other hand I want to give you something to work with. I hope you will understand that it will be a fairly general reply based on a likely diagnosis of Parkinson’s if that makes sense.
It’s a bit formal but for clarity I will use bullet points.

A diagnosis of Parkinson’s is not the end of the world but it can feel like it. It is not a condition that is generally well understood and most people know little if anything about the condition on diagnosis. This can trigger a whole range of reactions and it can feel like a very rocky road. It’s OK to be scared. It’s a scary and worrying time.

Your reaction is not uncommon ie you just want to know so you can get on with it as it were. Unfortunately,Parkinson’s is a complex condition with no simple answers - there’s no definitive test, there is no definitive treatment plan, and it’s impact is very individual. It can take time to sort everything out.

There is no right or wrong way to living with Parkinson’s only what works for you. All of us on the forum will have been through the - of finding a way to live with it and so will you- though you may not think so at the moment. How long this may take is a how long is a piece of string question. My own way is to stay positive and I work hard to do so. I have my moments of course but I’m almost 12 years on from my own diagnosis and am still doing ok.

For most the condition moves slowly so there is generally time to decide what action you want to take.

Speaking for myself, one of the unexpected aspects of Parkinson’s is the relationship you have with your consultant in particular. It is much more a partnership; in his letters he always writes along the lines ‘we have agreed…’ It took a bit of getting used to. If your experience is similar it helps to give as clear a picture as you can of how you are managing. To this end many use a diary to record changes, what you did, how you felt and so on, in fact anything that helps to make sure your consultant has good information on which to make decisions. It is also useful to note down any questions you may have so you don’t forget anything. I would add here it doesn’t have to be a diary any method that suits you will be fine if that sort of thing is your forte.

I note you have already done some reading and I hope you have found it useful. We normally advocate not going mad and reading everything you can lay your hands as it can lead to information overload and a tendency to only remember the worst case scenarios. Keep reading by all means but do be aware what you are reading about Parkinson’s may not be what your experience is and don’t get too drawn in to what life may be like in the long term future.

You may need to do things a bit differently but you can still do them if you wish to.
Keeping physically and mentally well is an important part of living with Parkinson’s.

November isn’t so far off and you can use the time to perhaps look at your fitness routines - YouTube has lots of videos on exercises for Parkinson’s- and maybe starting some kind of record and noting questions. These may well be useful whatever your eventual diagnosis I would have thought.

Should you get a diagnosis of Parkinson’s, give yourself time to get used to it and adjust. It may not be the life you envisaged for yourself but you can still have a life worth living, it’s just different. Yes it can be challenging and frustrating and all of us would prefer not to have it. Since we have it, it largely comes down I think to your attitude and mindset - it’s still your life so why not make it as good as you can. I don’t define myself by my Parkinson’s. I don’t feel sorry for myself (most of the time) and I most certainly do not give it star billing. I am Tot who happens to have Parkinson’s.

Hope this gives you some reassurance. Good luck and let us know how you’re going along.
Tot

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Thanks Tot, that is really good advice. November feels like a long time away.
Exercise I am finding frustrating as I am struggling with what I normally do. I’ll look for some you tube videos. I am guessing yoga and balance work will be useful

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You guess right Kira that’s an excellent starting point. I know the waiting is hard. It may help if you can think of it in chunks the size of which depends on what suits and make that your goal. You might for eg use the month end
Goal 1 get to the end of August Goal 2 end of September Goal 3 End of October
Then you’ve made it to November. You could do weekly, fortnightly goals if that suits you more. Aim to have something to aim at anything that gives you something to concentrate on - meal planing for a month, clear out that cupboard, read a book a week, go for a 15 minute power walk 3 x pw, play some old records and relax, you get the idea. You might like to try a gratitude diary it may not seem appropriate at the moment and you are likely to find it hard but it’s backed by some scientific evidence that it is beneficial and could be a strong tool for you if you can master it. You may need to look about to see what format suits.
November will come, but don’t miss today whilst you wait, today only comes once.
Tot

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Thanks tot. While I am finding a lot of the exercise I normally do hard, I am managing to work on the allotment, which got out of hand this year after I tore a tendon (running with the foot cramping!) so I am aiming to get that into shape by November! Plus eat all the veg I have growing :slight_smile:
I have an app with 15 min yoga sessions so a session most days is achievable.

Good for you that’s exactly how to cope with the waiting but be kind to yourself too, and I expect the November appt will never be far from your thoughts so your moods and emotions may be shall we say a bit variable. The forum is always here if you need or even if you don’t there’s some fun stuff too. Take care.
Tot

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Hi Kira, welcome to the forum, you will find heaps of support, guidance and advice on here. I joined last year, similar situation waiting for DAT scan results and the feeling of being in nowhere land, is it? isn’t it? If I can offer any advice it would be to say, whatever the outcome it can’t be changed, take each day as it comes, definately rollercoaster days but until I knew what I was actually dealing with I tried very hard to put the possibility of PD diagnosis to one side. I started medication last August, doing well, it’s been a bit of an uphill walk but I am standing at the top now. I took some wonderful advice from Tot (thank you Tot again), I kept a diary of my symptoms, mood, emotion, sleep pattern, anything and everything so I could share with my consultant. This proved really useful at face to face appointment, he suggested adding another med which I said I would think about. When I had appointment following this with PD nurse we discussed fors and against, but felt as only being on meds for some 7 months felt it a little early to be adding in another one - to give me a boost on afternoons, get quite tierd. Looking back at my diary, getting my head around the diagnosis, working full time in quite a demanding job, keeping a routine of some description I felt no wonder I am shattered! So discussed with GP and booked some routine bloods, eh low calcium, and then peri menopause, yayy! so not a potential of my parkinsons? I would say listen to your body, each day is different, I walk every day, have a set physio routine, have made adjustments to how i cope with practical things as this was really frustrating when i couldn’t do something and felt had to rely on hubby. I haven’t taken the approach that any new or developing symptoms could be related to PD and have made informed decisions when I have all the information I need. I made some workplace adjustments, use voice activiated software though this was a challenge in itself adding words to my dictionary hilarous. I would say take each day as it comes, November will soon be upon us, Christmas decs in stores already, 19 weeks! In the meantime stay postive, enjoy a little of what makes you :smile: I really understand how you feel, it can be a worrying time, have a look around the forum there is a creative corner where people have shared and is really inspirational reading, you are not alone in your journey, take care

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Thanks AnaElsa
I too am peri-menopausal - what a delight. I was hoping that would explain my symptoms but after nearly a year on HRT I don’t think I can blame perimenopause for everything!

Ahh, for me i listen to the advice the medical profession give out, try to make an informed decision at the end of the day, like you reply some symtoms could be down to the peri phase? I haven’t really had anything so still weighing up the options of starting HRT, only posted the other day in well being section for any advice. A diary definately helped me, memory recall,particulalry when got in person appointment with consultant was able to go through with him. Is it worth chasing the NHS neuro secretary and asking if you can go on a cancellation list? If the neurologist you saw privately has passed on his records this may help speed up the appoinment time. From experience every trust operates differently, in my case I had MRI followed by a DAT scan, then started medication. Only advice, you have nothing to lose by asking them, if you get a helpful secretary and explain they may be able to push things along a little, particulalry as you said you are thinking of starting meds, take care

It’s an interesting point that is being made here and one that is quite often overlooked ie when one is living with a chronic condition, whatever it may be, it is easy to attribute everything to that condition and not things such as the natural ageing process. Quite often too others find it hard to accept you might just be in a bad mood or annoyed plain and simple and assume it is (in our case) the Parkinson’s. Equally where there is more than one medical condition that are both/ all chronic, such as I have, it is easy to think that any issues that arise can be attributed to what appears to be the predominant condition. I certainly do this and assume things are Parkinson’s related when that might not actually be so.
Tot

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Ana\Elsa - hmmm I had been thinking of trying to ring to speak to the consultant’s secretary. Will try tomorrow. For perimenopause I found with HRT the hot flushes etc went pretty quickly. I did some research before asking the GP and think even without symptoms HRT is worth it for bone protection etc.

Tot, true about the different conditions, I also have autoimmune underactive thyroid that was diagnosed a few years ago and am on levothyroxine, so initially was putting a lot of fatigue etc down to that. I have had bloods recently as I spoke to the GP about fatigue when I asked about the neuro consult. Bloods were all fine and pretty comprehensive. Trouble with fatigue as a symptom is, so many things can cause it! The physical motor symptoms and dystonia are really the ones affecting my everyday life the most though. I think my husband always attributes my bad moods just to me :smiley:

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an update, rang the hospital, got called in today and diagnosed with PD. I have been prescribed ropinerole XL. Not sure how I feel but hoping I get back to being able to walk properly at least.

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Hi Kira, so glad you managed to get an answer, I know you said you wanted to start meds, how are you feeling? Okay ish?? I know when I was in your position I still felt a bit lost, tbh taken me a good twelve months to come to acceptance point, hope you get on okay and have some decent weather and you are able to get out for a walk :smile:

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At least now you know and you didn’t have that wait to November after all. If there’s anything we can do to help you manage the early days you know where we are
Tot

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thanks tot, I think in some ways there is a sense of relief of having a diagnosis, but also the enormity of having this thing for life and not knowing how it is going to pan out.

Not sure how quickly the meds will start to work but hopefully I will notice a difference before too long.

Hi. Just catching up on your chats and can relate 100%. I was diagnosed on 1st April 2017. I am 56 and living with pd. You do learn to live with it and keep well. Be kind to yourself. Live for the moment and decide who and what is good for you. Avoiding stress was a major thing for me. A diary in the early stages can be useful. Also excercise is important. Maybe try different things…tai chi, golf work for me. Weights also good. Good luck xx . Karen

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Hi.
I am in a similar position. First noticed symptoms (heavy legs, softer voice, struggling to articulate words) 6 months ago.Tried to make a face to face appointment at GP practice. Unsuccessful, even a telephone conversation was not possible. Tokd to ring back following week to try and make a telephone appointment. Tried for 18 weeks without success. Eventually got through to the receptionist who told me it was either arthritis or just a sore throat and too take pain killers. I tried ringing each day and eventually the receptionist said she Wu your discuss my concerns with a nurse. Receptionist rang back at the end of July and told me that it could be Parkinson’s Disease but as there was no cure or treatment it was not an emergency but if it got worse I could to to A+E. Went in to the surgery to plead for a consultation. Receptionist said she would speak to a nurse. Rang me back 3 days later and said she could offer me a telephone consultation the second week in October.
So more waiting. Symptoms maybe getting a bit worse but nothing I can do. Almost given up hope.

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