Newly diagnosed


#1

I have had tremors in my legs for about 14 years. I cant remember the last time I could smell anything and have developed quite a few other symptoms over the last 3 years. I woke up witb a numb right forearm, part of my left leg went numb whilst in Italy, these have never improved. I have severe constipation, shuffle when walking, have 3d vision, memory problems, difficulty swsllowing even saliva sometimes etc etc. I have seen 3 NHS Neurologists who have all said something different and fobbed me off basically saying it is in my head One said I had PTSD cos my father sexually abused me as a child. My hubby and I knew that this wasnt right so we paid to see a private movement neurologist and a private head MRI. She says that I have stenosis of the spine and early stages PD. The tremors are getting worse, I have right side weakness, I hadnt noticed that I dont move my right arm when walking but she did. She was extremely thorough. The scan showed something in the madtoid area of my ear which she is going to speak to my GP about as I have just started with vertigo. There is also more fluid at the front of my brain than should be. She has recommended different drugs, a full body MRI, memory tests and a Datscan. To have theses done private will cost a fortune do she is sending the report and recommendations to my GP to sort out. I am so frustrated and let down by the NHS Neurologists I saw but also worried and a little scared of how the PD is going to pyogress and what impact it will have on my lovely hubby of 32 years. Can I also ask a personal question - does PD affect your sex life and does it set off tremors for anyone else?


#2

Hi @Michelle65,

A warm welcome to the forum. :slightly_smiling_face:

First of all, being diagnosed with Parkinson’s can trigger a range of emotions with it, but there is a lot of support out there to help you take control. Signing up to this forum is a great start, there are loads of people here who have gone through exactly what you are facing now.

It’s really unfortunate that you’ve had such a bad experience with the NHS, particularly with the neurologists you’ve encountered - I’m truly sorry that you had to go through that. I think you made a good decision to go private; now that you’ve been diagnosed, I think you’ll find the 'newly diagnosed section on our website incredibly helpful. It has information on all the support available to you as well as information and support events that are designed for people who are newly diagnosed with Parkinson’s. You can find this information here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons.

We also know that the topic of sex can be quite sensitive and uncomfortable to talk about which is why we have an entire section on website dedicated to it, you can find it here - https://www.parkinsons.org.uk/information-and-support/sex-and-parkinsons. This has been quite a common topic on the forum in the past so I’m sure you’ll receive a lot supportive comments from your fellow members.

Lastly, our helpline is also available to you, if you’d like to speak with a specialist about your worries at the moment. You can call them on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email [email protected].

I hope you find this information useful.

Best wishes,
Reah
Forum Community Manager


#3

Hi Michelle,

Welcome to the group. I’m newly diagnosed myself so am still coming to terms with it and trying to reorient my life somewhat. I was fortunate in that the neurologist I saw was a bit odd but he didn’t fob me off and was quick to make his diagnosis. I’m waiting to hear from the PD nurses now and at least I have an answer and a way forward (exercise seems to be very important)!

I’m also thinking about my wife (we’ve been married for 13 years) but she’s determined that we are going to make the best of the situation.

Take care,

Euan


#4

Dear Michelle,
Compared to you my diagnosis of PD was picked up by the first neurologist, my GP referred to. And an MRI scan to rule out tumours, stroke history etc… All on NHS.
Does PD effect your sex life, you ask? YES…in my case, being a 73year old man, erectile dysfunction is 100%. Diagnosed 10 years with PD. And no sex for over 9 years. I am married, but it doesn’t worry me at all.


#5

Hi Michelle
There are two problems you raise which I wish to comment on. First, I have suffered quite seriously from Constipation about which you can read elsewhere on this forum. After much experimentation I found the best treatment for myself was to take two Laxido Powders every night. This resolved my major problem of constipation but taking laxatives also brings its own problem of loose bowels. I have to try and ensure my bowels are evacuated before I can leave home in the morning to avoid “Accidents” when I am away from home. Secondly, you ask if PD affects your sex life. Whilst Frosty’s experience of erectile problems may well apply to himself, this has been far from my own experience and that of many others who have PD.
Indeed, you can also read elsewhere on this forum of those who have experienced the opposite problem of increased sexual arousal. I hope my comments remove some of the anxiety you may feel. Best Wishes, Gerrard


#6

Thank you for your feedback everyone and I will take a look at the relevant sections you have mentioned. I am so glad to have found some support.