Is there a way to go?


#1

I'm not sure if I should be doing this as I haven't been through the whole of a possible diagnosis procedure. If I am breaking rules or procedures I apologise and you can just ignore my ramblings. I am 78 years old and for some years have been suffering from spinal stenosis which is kept under control with morphine patches. Some month ago I started having episodes of total imbalance I couldn't remain upright without support. My doctor sent me directly to hospital as a stroke was suspected. A catscan seemed to rule this out. However after a thorough examination and tests at the surgery she referred me to Southmead Hospital Bristol for a neurological examination. That took five months. I saw the neuro who seemed to suspect that something was amiss. I was seen at 'The Brain Centre' where they specialise in MS and PD.
Since all this started, some then minor symptoms, seemed to worsen by the time I saw the neuro. Briefly the imbalance, a slight tremor, aching and tingling from the left shoulder down to the fingers of the hand, itching (enough to drive you mad) in the area of the left hip with no apparent visual cause, episodes of urge incontinence to the degree that I have wet myself on a number of occasions. Some of the dexterity tests conducted by the neuro I clearly failed. Until recently I was the Chairman of our local council but have since resigned. I used to consider myself quite intelligent and eloquent in meetings but now have trouble in forming a sensible conversation. Difficult when you lose words in your head.
All these symptoms seem to be worsening.
The neuro. is referring me for an MRI and 'other tests ?' as yet unspecified. I waited some months for the neuro appointment and now wonder how long I will have to wait for the MRI on my head and upper spine.
Could there be a rational explanation for all this? I am not the type to panic and if there is a major problem I can think myself fortunate that this has waited until my relatively advanced age. I feel that I have enough to cope with as it is. My life is restricted anyway, If I need to go very far I have to use a power chair.
Sorry for the rant. My wife thinks everyone is making a fuss for no reason. But in any event I feela bit better for getting it off my chest. So I guess now I just wait.
John


#2

Hi John916,

A warm welcome to the forum.

Thank you for sharing your story with us and for being so candid about your experience living with Parkinson’s. With regard to your speech; have you considered speech therapy? Speech therapist can give you tips and techniques to help with communication problems, e.g. difficulty in putting your thoughts into words or understanding what others are saying. We have more information on this on the Parkinson’s UK website, here.

We also have a helpline service where you can speak to a Parkinson’s specialist about any health concerns that you have. You can reach them on 0808 800 0303 and we can arrange for a Parkinson’s nurse to contact you within 24 hours.

I hope the above information has been useful and I’m sure you’ll receive a lot of help and support from the forum community.

Many thanks,
Reah


#3

Thank you Reah for your response. I saw the Neurologist on 22nd December and have yet to receive any letter or email. I rang the receptionist at the Bristol Brain Centre and was told that they are ‘behind with the letter typing’.
Is this normal. Do they usually take five to eight weeks to inform a patient of the result of the consultation. This being ‘in limbo’ is a very worrying time. Is this likely to continue, waiting months for an appointment, then many weeks for the result? It would seem that it is going to take many months for the whole process of MRI’s and other tests before someone can come up with a diagnosis.
I find it hard to believe that this is the norm.
Can anyone advise me please?
John


#4

Hi John916,
Unfortunately, results are a waiting game. It’s very frustrating and worrying for you. I finally went private only to get the results the same day as the nhs ones. Keep pushing for answers.


#5

Finally had the MRI and loads of other tests but suspicions that Parkinsons was to blame were unfounded. The MRI of spine and brain showed quite clearly that the problem is NPH, Normal Pressure Hydrocephalus. Unfortunately the only way of dealing with this condition is to drill through the skull and insert a valved drain tube into the ventricles of the brain and run the tube under the skin all the way down to the abdomen where the CSF can dissipate safely. Not a lot of fun, but none of these things are.
So I must leave you with my thanks for your good wishes and support.
Very best wishes to you all.
John


#6

Hi John,

Sorry to hear of your diagnosis, that sounds like its very complicated. I wish you all the best and demand the best for yourself.

Good luck