Awaiting a full Diagnose

[nellmowat]

Hello, my wife is now 43 and has been suffering from neurological issues since bells palsy in 2007 when she was 34, with symptoms such as slow thinking, memory loss, forgetfulness, depression, Leg or arm weakness, slurred speech, Balance problems, Language problems, such as difficulty finding the right words for things, Laughing or crying inappropriately, Difficulty doing things that used to come easily. I have had to fight for every single doctor and specialist to look at her explaining het symptoms every single time, and receiving the same answer test are inconclusive, its all in your head and so on, just take these pills and go away basically.
Recently though a consultant who is interested in these type of undiagnosed cases (as that is what it has been) this is not his normal job, decided to do further test starting with blood work which came back with a past Herpes Simplex infection at some point (around the bells palsy), this then led to a MRI and then a Spec Image Scan which has identified Reduced Perfusion (blood flow) to 4 parts of the brain, Left Frontal Pariental Lobe, Right Temporal Lobe, and both Posterior Parietal Lobes.
As you can image this has been a massive shock and the consultant could give us any information as I said early this was just an interest he has, we now have to wait for a Neurological Consultant to confirm these finds......
My concern is are they going push this under the rug as they have missed not tested for Vascular Dementia even though all the symptoms point to this?

Sorry for such a long post but I felt I need to get things off my chest as it been 8 years of banging my head against a brick wall to get someone to listen to my wife's issue without getting the not interested look as its not jumping out at them like a stroke or head injury

 

[witsend~1]

Hello, my wife is now 43 and has been suffering from neurological issues since bells palsy in 2007 when she was 34, with symptoms such as slow thinking, memory loss, forgetfulness, depression, Leg or arm weakness, slurred speech, Balance problems, Language problems, such as difficulty finding the right words for things, Laughing or crying inappropriately, Difficulty doing things that used to come easily. I have had to fight for every single doctor and specialist to look at her explaining het symptoms every single time, and receiving the same answer test are inconclusive, its all in your head and so on, just take these pills and go away basically.
Recently though a consultant who is interested in these type of undiagnosed cases (as that is what it has been) this is not his normal job, decided to do further test starting with blood work which came back with a past Herpes Simplex infection at some point (around the bells palsy), this then led to a MRI and then a Spec Image Scan which has identified Reduced Perfusion (blood flow) to 4 parts of the brain, Left Frontal Pariental Lobe, Right Temporal Lobe, and both Posterior Parietal Lobes.
As you can image this has been a massive shock and the consultant could give us any information as I said early this was just an interest he has, we now have to wait for a Neurological Consultant to confirm these finds......
My concern is are they going push this under the rug as they have missed not tested for Vascular Dementia even though all the symptoms point to this?

Sorry for such a long post but I felt I need to get things off my chest as it been 8 years of back my head against a brick wall to get someone to listen to my wife's issue without getting the not interested look as its not jumping out at them like a stroke or head injury

Please don't give up now. At least some-one has now listened to you and maybe this will prove to be the beginning of an answer to your questions. Good Luck and best wishes

 

[stanleypj]

Welcome to TP nellmowat.

I can well understand your concern. My wife was first referred to our local memory clinic (headed up by a leading expert) in 2000 and was not diagnosed until 2012 - by a horrible neurologist who said it was plain old Alzheimers's despite the fact that we had previously been assured that she did not have AD. VasD, LDB and a host of other things were all ruled out. Though it was clear from quite early on that she had some kind of dementia, in the last few months a doctor from Adult Mental Health wrote 'Diagnosis: diagnosis uncertain' on a report following a routine visit. Oh, and it's now clear that she has some Parkinson's symptoms though she does not necessarily have PD. My wife had numerous tests during the years leading to the diagnosis, including MRI and SPECT with similar results to your wife's.

Diagnosis is often a far more complex process than people would have you believe. I wouldn't fret too much about the possibility that Vas D has been missed. As there's no treatment for that anyway the benefits of having that label are perhaps uncertain.

You are lucky though to have a medic who is interested and prepared to investigate. You might google Professor Ruth Itzhaki of Manchester university who has done a lot of work on the link between the herpes simplex virus and AD. Her work on this has been discussed on TP:

http://forum.alzheimers.org.uk/showthread.php?53209-Herpes-simplex-virus-type-1-(HSV1)-a-cause-of-cognitive-impairment

Please feel free to send me a Private Message if you would like more info.

 

[nellmowat]

Thank you for your post, I will look into this professor and hopefully we might get further on for a confirmed diagnoses.