I had a Thalamic stroke almost 2 years ago. It was undiagnosed for 3 months. At the time it happened, I had pins and needles all down one side, but it was missed in A&E because I was given a CT scan, which didn’t show anything. As the numbness, cold, and tingling increased I eventually got an MRI Scan, which revealed 2 bleeds in the Thalamus. I think that because I can walk and talk, swallow, and have a very strong grip, I have not had much support from anyone who knows about it. Everything I know, I have found on the internet.
When I first got the diagnosis, i was full of gratitude. I had a stroke and I appear to be normal with movement, cognitive functions, and general health. This was, in a way, my downfall, as I have received minimal support.
However, the symptoms are still increasing in intensity, and the left side of my body is becoming extremely stiff. I feel freezing cold most of the time. My left hand has movement, but minimal sense of touch. There are several other side effects.
I am 77, but I am a determined person, maintaining an active lifestyle, eating healthily, keeping my interests, social life, and being independent, and keep up the smile and the good cheer. I must appear to be “normal” to people, who always comment on how well I look. However I am beginning to struggle with an awful kind of lonely isolation. I feel as though I am sliding down a hill, and no one knows. Can anyone help, please?
There are all kinds of strokes, my husband looks fine, no droop except a barely perceptible one on the right hard side where he is more jowly. He can speak well. And not very mobile but getting around slowly with a stick. He had a front lobe stroke and a subarachnoid bleed on the brain which is quite rare.
People who see him keep saying how well he looks and he does but he is far from well.
Many assume that a stroke victim should have a pronounced droop and be paralysed down one side, like Andrew Marr. I suppose I thought this too but in the stroke ward my husband was on there were many variations on a theme.
You have real discomfort/pain caused by your stroke so do follow this up with your GP or stroke clinic.
You should not feel alone with this and am sure this forum will help or any stroke groups near you.
@1amBetter Hi & welcome to the community. Sorry that you are finding things difficult and have been lacking the support you need .
It is not too late to get that support so please do see your GP & push for it. And if you get no joy keep asking until they do something. Sometimes you have to make a fuss to get the help you need.
Also, give the Stroke Association helpline 0303 3033 100 a call as they can advise on other things you might be able to do too.
Best wishes
Ann
Hello 1amBetter,
You have described exactly my symptoms post a Thalamic stroke 8 months ago, I’m 76, I too have a strong grip have not lost strength in my arm or leg but my left side from head to toe remains numb, I have tingling sore and sometimes extreme pins and needles down my leg and arm. I have extreme pain from my pudendal nerve which affects me when walking and especially sitting….but… I look OK, so no one knows unless I tell them what this all feels like, I’m greeted with “you do look well”
I am taking Gabapentin for the pins and needles, so far it’s not working, it can be increased, I just hope it will eventually work…
I’m sorry you are feeling so helpless, are you getting any pain relief 1aBetter? Is your GP helpful? This Forum is a really good place for you to be, there is so much support and it really helps to know you aren’t alone with how you are feeling….. I had 6 weeks help initially from a physio team and an Occupational therapist, I had re sensitising therapy which has given me more feeling in my leg but like you my limbs are getting stiffer…I’ve recently seen a Neurophysio privately, she’s given me some balance exercises and some exercises to strengthen my core…So onwards and upwards! I’m still here!