Could PV affect speech?: I have posted before... - MPN Voice

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Could PV affect speech?

jillydabrat
jillydabrat

I have posted before about suspected TIA, well my speech is still bad with slurring and not being able to get the words to come out.

I am wondering if my PV could be the cause. I know that it can attack nerve endings so I was wondering if it could be affecting any nerves which affect my speech?

I may be grasping at straws but when I saw my Endrochronologist yesterday I broke down in tears with pure frustration. I had to assure him I hadn't been drinking because I was slurring so badly and couldn't find the right words. I won't even talk on the phone now. Any suggestions anybody?

13 Replies
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Hi, sorry to hear of your problems. I think you should see your gp or your haem asap to find out what is causing this. I would demand an appointment as you need to get answers or treatment if need be.

Keep in touch Aime xx😺😺

Ps sending E hugs too.xx

Hi, you sure are having a tough time just now. I'd feel very frustrated too. I wish I had answers for you. The only helpful thing I can say is get yourself to your docs, with everything you need to say written down beforehand. You need answers, and I hope you get them soon.

Liz xx

Hey Jilly... :)

Sorry to hear about your problems. You have already received some very useful advice from others... I especially liked the part about writing things down, in an effort to explain yourself to your doctors or anybody else too really. However, it is a tough lace you are in at the moment...

I too have suffered from two (2) known TIAs, and I know I also had the symptom of slurred speech on the first occasion, however, it did later clear up for me, but I have noticed that if I am a tad more anxious than usual that small instances can & do still occur, and even after quite some time. Hence, try to stay calm Jilly... learn how to do relaxation exercises or perhaps some Yoga? I too am just now looking into some Yoga classes for myself.

Chin up girl :)

Write it all down, and go see your GP and he/she might even be able to refer you to a Yoga/Meditation practitioner that could assist you further...

Let me know how you get on too okay? :)

Later

Steven

(Sydney)

Jilly how worrying and frustrating. You clearly have all yr marbles ok from the way you write. I have found my ability to speak well has decrease markedly and not sure if old age/taking hydroxy, though I have never heard of PV attacking nerve endings. Writing it down sounds a good idea and go back to yr GP soon

Jx

No advice except to see your GP. But sending you virtual hugs x

Please go see your GP - like right now! No idea if it’s the PV itself but could well be the result of a PV related incident like the TIAs. If you can, take someone reliable and stubborn(!) with you to support you and help you articulate your concerns. Let us know how you get on. 😘

jillydabrat
jillydabrat in reply to Ebot

Hi Ebot, thanks for your reply to my post. I telephoned my GP who is awaiting the discharge letter from the Neurology Dept who saw me as an emergency case and gave me a MRI scan. He was going to chase it up yesterday. I also phoned my Haematology Consultant but she is away until Monday. My speech is much better today with only the odd stuttering but if the pattern stays true I will be having problems again soon. I will certainly keep everyone up to date. For now I am keeping nice and calm with my knitting (never made so many jumpers lol). Thanks for everyone's concern, that's why I love this site, you can always rely on support no matter what the problem xx

‘Stay Calm and Keep Knitting’ seems to be the order of the day! I know it’s the last thing you want to have to do and worry about but please keep on their backs until you get some answers. Clearly something isn’t right. Even if it is intermittent. 😘

Hi Jilly,

Not being a medical person of course I really wouldn't have a clue as to what effect PV may be having, however.... having had ET platelets doing weird things to the nerves in my toes, causing visual migraines, ringing in ears and so on, it seems entirely feasible to me that your PV red blood cells may be blocking up the works somewhat and causing nerve transmission problems.

I am so sorry that you are having this horrible time and that the person in a white coat that you saw had asked stupid questions regarding if you had been drinking. I'm not defending the Endro-what-not person at all (the fact that you can spell such a Specialty tells me that you are far brighter than me and not impaired by drink!), but I guess they might have been doing the "check list" thing that so many medical people seem to be trained/brainwashed to do now. I find that visiting doctors these days can be like being a Co-pilot in an aeroplane, you get a rapid fire set of standard questions to answer...... "Mixture?" Mixture rich. "Throttle?" Throttle set. "Oil pressure?" Normal. "Flaps 20?" Flaps 20 Sir! I know that such things can help in diagnosing problems, but I think that the more old fashioned approach of human compassion, intuition, and wisdom can go a long way. How I wish that doctors would throw away their computers too.... I get so frustrated with a certain breed of medical person that spends most of the consultation peering at a glowing screen and clattering on a keyboard rather that actually making eye contact or, Lord help us, even doing the basics of slapping a cold stethoscope on the aging chest to check that there is still life in there, or wrapping a blood pressure thing round my flabby arm to check blood pressure!

Anyway, this is to send love and hugs (such as can be sent by Email) and my very best wishes to you. Peter

Write down your condition and MPN problems - use lots of big words and go to emergency dept at the hospital. They will know you have your marbles then when they read it.

Hi Jilly. I have no idea, but wanted to tell you that I'm thinking of you and am sending love to you. I hope you get answers soon. Take care, Mel xx

Thanks Harley, really kind of you to send such a lovely message x

my husband has PV. They say it's secondary bc he doesn't have the mutation...but they can't find the cause. He "can't get the words out" and stutters. Particularly when he stresses out. The tiniest thing going wrong can trigger it and then he downward spirals as it gets worse.

He does bloodletting and it seems to ease his symptoms. Even the speech issues...they are still there just very mild.

Let me know if you figure anything out and vice versa

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