How bad does your speech get?

[jillydabrat]

I was diagnosed with PV Jak2+ in 2015 after going to my GP (many times) because of exhaustion, numbness in my feet and slurry speech. I was put on Hydroxy 1000mg 7 days a week.

The exhaustion is still there, the numbness in my feet abated somewhat, but the slurry speech, if anything, is worse. It’s worse when I am tired, in fact it’s how my hubby knows I am tiring, but I am getting increasingly embarrass because I sound drunk. Not only do I sound drunk but sometimes the words will not come out. It’s like they just get stuck in my throat. I have to stop, take a breath and try again. I have found it easier now to explain to someone beforehand that I may have trouble with my speech and why rather than having them think I have been on the tipple. I don’t drink at all by the way.

Does anybody else have it this bad with their speech?

[ksos]

Hi -- I have trouble finding words, or the right words, and that gets worse the more tired I am -- to the point that sometimes I can't make the effort. But I'm not aware of slurring. I'd suggest talking to your doctor about that specifically. Good luck with this.

Best,

Kim

[Cassie11 in reply to ksos]

I seem to not be able to find the right word quickly but I am 67 so it might be age.

[ksos in reply to Cassie11]

I'm 67 as well, so I always think about the possibility of age with all of this. But as others have noted, slurred speech can indicate a number of other things, some serious, so I hope you'll see your doctor and really push about an explanation and testing.

It takes forever for my doctor to take my symptoms seriously, but when I press, he does. And let us know how you're doing.

[Osteomyelio]

Does your physician know about your slurry speech? My speech only slurs when I have low sodium. I have no idea why you get it. I’m sorry but I feel your physician needs to help you.

[hunter5582]

The slurry speech is something to follow up on. There can be a number of reasons for this symptom from biochemical to neurological. It is not something to just ignore. It might be MPN related in the possibility of thrombosis affecting the brain, but you do not want to assume that is what it is. The disruption of the JAK-STAT pathway can have a multitude of effects and the impact is not always clear. My own health journey has involved consultation with: hematology/oncology (MPN Specialist), neurology (NF Specialist), endocrinology, rheumatology, gastroenterology, Integrative Medicine, and my really terrific PCP. It can take a lot of detective work to noodle down to what is going on sometimes. What you are experiencing might be MPN related, or it may not be.

I hope you find some answers soon. I also hope you do not have docs who just blow you off when they do not know what to do and would rather just ignore your concerns. One of my most important learnings has been that assertive patients get higher quality care - passive patients do not.

All the best.

[MCW22]

The only time I had slurry speech was when I was having a stroke a few years before my PV diagnosis. Have you had a CT scan to eliminate stroke as the reason?

Carol.

[paintbox]

Hi jillydabrat.

I too have experienced slurred speech. In fact I kept saying that my tongue felt 'fat' and as though I couldn't manoeuvre it in my mouth correctly to form words. I was v self conscious for period of about 2 years prior to diagnosis, of sounding drunk or just stupid.

Because I'm dyslexic friends were used to me saying daft spoonerisms and getting my words stuck but I knew this was something v different and like you it coincided with extreme fatigue. I was a period of stress too so I'm sure that didn't help.

This issue rarely occurs now that I'm on aspirin and more significantly I am reassured it's due to my ET. I've had no thrombotic events and I get far less extreme fatigue as I'm better at noticing when I need to rest. Since the fatigue is lessened, so have the visual migraines (eyes felt fat, blurred vision, inability to pull focus) and the fat tongue feeling - both I was led to believe, we're due to the thick blood trying to pass through very small blood vessels in the eye and tongue.

I really hope this settled down and you find reassuring answers soon. It's very frustrating and distressing. Be patient with yourself and take care.

Best wishes Órla

[grgracey]

Me sometimes only I take also 1000 mg of hydroxy and the doctor gave me everyday aspirin...huhuhu!!!😭too many meds.....plus I have folic acid

[jillydabrat]

thanks for all your replies, I always know I will get good advice from my MPN family. I see my Haematologist on Monday so will talk to her again about it. I am so tired that I think I need another short course of Iron because I am feeling exactly the same as I did the last time I was iron deficient. Putting one leg in front of the other is a chore and I am getting so snappy with the tiredness. I will update you all on Monday, but thanks again for your replies, I really do appreciate them.

[Uzza]

Only on one occasion and it passed quickly...they put it down to a TIA.