I need your help again: Hi my MPN family. I had... - MPN Voice

MPN Voice
5,727 members7,860 posts

I need your help again

jillydabrat
jillydabrat

Hi my MPN family. I had an appointment with my Haemo Consultant 2 days ago and I told her of the event about 6 weeks ago when I started having problems with my speech again, mainly struggling to get the right words out and stumbling over them when I could find them. Because this was the second episode my consultant wanted me to be seen by Neurology Dept. Imagine my surprise when, the following day, I had a call offering me an appointment at the TIA clinic today. This is the second time I have been referred there for a MRI scan. The first time I was told that because I had waited before going to my doctors, it would be highly unlikely that the remnants of a TIA could be seen on the scan.

The incident I told my consultant about this time happened 6 weeks ago so I knew it was too long to see anything again. It took 2 1/2 hours to be told diddly squat.

This time though I saw a different Neurologist and he was totally dismissive. He wanted to know why I thought PV put me at a higher risk of a stroke! I told him that it was my Haemotologist Consultant who told me this and who had referred me to him today. I told him that my speech was back to normal now but, the last time this had happened, I had posted on this site and I received lots of responses from people who also went through stages of stumbling with their speech and tripping over words. To be honest I was surprised at the number of responses.

The consultant this time wanted to know why I thought PV could possibly affect speech. I asked him if he could tell me why PV affected balance, sensation in the feet, bone pain and hey ho, he couldn't answer.

What I really want now is for anyone who is experiencing problems with speech to answer my post so I can show my haematologist that I am not the only one going through this and that I am actually not going mad. So, please, if you can reply to my post I would be more than grateful. I felt an inch tall the way the Neurologist was talking to me and at one point I just got up to go home as he didn't seem a bit interested. I am hoping to go to my next Haemo appointment armed with a fistful of responses from people who experience the same thing. Thanks guys

27 Replies
oldestnewest

Hi, as you’ve probably seen I have been re-diagnosed with idiopathic erythrocytosis which still means too many red blood cells and thick blood but they don’t know why.

My hematocrit is up at the moment (venesection tomorrow) and I definitely have brain fog, can’t remember the word I want to use, stumble over words. I am at the point I was going to take it up with my gp but other things took priority at the last appointment. I also get fleeting headaches and ocular migraines and my balance is a bit dodgy.

Stick with it, don’t accept an answer you’re not happy with and insist on what you need to get your answers and relieve your worries. Hope this helps a little. Kind regards Aime xx😻😻

PS meant to say, it’s a shame that some medics are not people persons!xx

Hi: I'm so sorry that you have to fight so hard just to get heard. I have ET, so not sure if my experience will help or not, but there are lots of times when I have trouble finding words, stumble when I attempt to speak -- everything you describe. My difficulties increase when I'm fatigued, which makes sense.

The symptoms that you are describing (both increased possibility of stroke and speech problems) are listed in the research that's out there, so if you have the energy, you could search some that down, print it out and give it to your doctor. I really hope the responses here and whatever else you find help. It is so frustrating to be suffering, knowledgable about what's happening to you and then be dismissed by the one with authority to treat you. Good luck!

Kim

I too have ET and have had two TIAs. Your speech symptoms sound exactly like a TIA to me. Elevated platelet counts can increase the risk of clotting which increases stroke risk. So now in addition to hydroxy to decrease platelet count I’m on clopidogrel and baby aspirin daily to work against clotting. Are you taking aspirin and/or clopidogrel for that purpose? If not I’m surprised your GP and neurologist haven’t suggested that.

Hi Jilly, yet again you are having a tough time, and really feel for you.

I have had many 'sort of mini strokes' over past few years, sometimes landing in stroke wards, and often admitted via ambulance....to do with not being able to speak, but also mouth droop, not being able to move left side, etc.

Admittedly, first twice came from high platelets, as not on any drugs. But, I began to suspect that Anagrelide was causing my problems! No one in the medical profession obviously believed me, but think somehow they do now, as have stopped Anagrelide couple of months ago, platelets were over a million when I stopped ! but not had one single episode since. I asked Stroke Consultant and Haematologist to check and they both could see that strokes are mentioned in the literature as actual side effects of this drug....I also think other drugs, too, have same side effects. Interestingly and very surprisingly, the Haematologist said I should 'forget platelets and blood tests for 3 months and see how I get on'....which delighted us, but also seemed somewhat confusing, after wanting me for about a year to have fortnightly tests....I look and feel so much better, not being on that drug, but also know I carry a risk because of the high platelets. Still taking Turmeric, also.

Everyone is different and what is right for me could well be wrong for you, etc., but do think you should have every bit of input possible, so can make an informed decision about what is best for you.

Hasten to add that I have the most kind and conscientious Stroke and Haematology consultants, who are always concerned for my welfare.

Really sorry you always have such a hard time. Do hope things improve for you.

Kindest regards, Tinkerbell

I’m new to this but was prompted to reply as I suffer regularly from stumbling over words and losing the thread of dialogue. I was diagnosed with PV 7 years ago. I’ve never highlighted this at appointments or researched the possibility that it is connected to my condition. To be honest I’ve been too concerned that it was some form of dementia. I have a hospital appointment next week and will mention it. I’m learning so much since I joined.

Hello my lovely, thank you for responding to my post. I have had such a good response thanks to the wonderful people here. When I saw the neurologist, I was getting so frustrated trying to explain what I was going through. I told him that I may appear to have relatively normal speech to him but I know my body and I know my speech is not normal to me as I still have hesitation when trying to speak, especially during long conversations. I told him that I was scared that I was beginnng to develop dementia because I was struggling to find the right words also. Thankfully he told me that my MRI scan did not show any sign of “shrivelling” so there was no signs of dementia. I am 57 so it was frightening to think this, as you will know. Hope this alleviates your fear of dementia a little.

Jill

Thanks. I’m almost 63 and have lost 2 school friends already to Alzheimer’s which is probably why I worry but it is indeed reassuring to hear from others. All the best

Hi there jillydabrat, I have Pv and struggled thinking things through correctly, according to the Mpn voice website Confusion is one of the symptoms. This was especially true when I was iron deficient.

Hi Jilly

I need to tell you that you are not alone in thinking that you might have been having TIA's I too have had three episodes of speech disruption along with very strange visual disruption , like a burst of sparkling shards of light on one side of my head/eye. As you say it disappears to soon for a full and correct diagnosis, but both doctors I saw believe it was TIA's ( possibly) you can never get a straight answer. By the way I have PV Jak2 and a bloody awful leg rash for the last 4 years that the Dermatologist just shrugs his shoulder and says ' Well I dont know what it is. We are not National Health service here and have to pay, so cheer up UK patients, you have all the luck lol. Sending you good wishes for the New Year,and of course better health. June

Ebot
Ebot
in reply to bordeauxgirl

Hi. The visual disturbance you describe could well be ‘aura’ associated with migraine. Sometimes referred to as ‘silent migraine’. Not uncommon with an MPN. I understand it is also possible to get some problems with articulation with this.

bordeauxgirl
bordeauxgirl
in reply to Ebot

Hi Ebot, Quite agree these episodes I had could well have been migraines as in my younger days I had migraines three or four times a week , but I hadn't had one for over twenty years so, that's why the 'docs' thought it could have been TIA's . Who knows? no one can be certain to give you a definite answer. Best wishes for 2019

Hi. I’m afraid I don’t have any answers but wanted to say how very sorry I am that you have such completely awful doctors. They should be ashamed of themselves. You deserve much better. Hang in there. Katie

I have had a few of these events over the years, last one over a year ago, coupled with scintillating auras in the eyes. Definitely linked to MPNs - I have PV JAK2 +. Often known as aural migraines. To mitigate I have a 75-81mg aspirin each day. With one of these events, I pop a 300mg aspirin under the tongue. This is standard first aid for a stroke victim. Events last 20-30 mins, just lie down.

Also keep well hydrated drinking 2 ltrs water a day, plus other liquids. But no regular sugary sweet fizzy drinks.

Ebot
Ebot
in reply to Freetheheel

Ah. Just seen your reply as I scrolled down. Yes, what Jilly describes does sound like aura migraine. Suffered from migraines for years - in various forms. But in recent years tending towards aura and no headache. Interesting as to whether the MPN diagnosis had any influence here. I took propranolol and vitamin B2 as prescribed by my neurologist. Thankfully haven’t had one for a long time (don’t want to jinx it by mentioning it!).

Hey Jill,

I'm sorry to hear about your disappointment with your doctor.

I struggle finding the right word even in my mother language. Moreover I struggle switching between two foreign languages. When I switch the language my brain keeps fetching the vocabularies of the prior language for couple of minutes.

I was diagnosed with PV in 2015 and now I have MF. I'm 40 years old.

That being said, I never thought it could have anything to do with my PV.

One more symptom I'm suffering of nowadays is the inability to understand the speech, I have to ask the speaker to repeat the phrase all the time even in my mother language.

It sucks anyway.

I hope this helps your doctor diagnose and come up with clarification.

Please keep us updated on this.

Cheers,

Malek.

I have a PV and every time I have a migraine (thankfully very rare now diagnosed!) I have trouble with my speech. I can't find the words I want and they get mixed up. Some words just totally disappear and lose their meaning. It's very confusing and frustrating! You aren't alone! Xx

Hi my friend, unfortunately when I told the neurologist that the speech problems were preceded by short, sharp headaches he just waved his hand to dismiss what I was telling him. Now, after reading all the responses, the headaches were very relevant. You are describing exactly what I have been going through, thank you, thank you, thank you

Mazcd
MazcdAdministrator

Hi Jilly, if you email me at maz.cd@mpnvoice.org.uk I can send you a copy of the symptom spider graph that has been produced by the MOSAICC study team, this gives details of the symptoms suffered by people with MPNs, and compares the symptoms to people who don't have MPNs, it's very interesting, so it might be best to take that to the hospital with you, and also you can print pages from our website mpnvoice.org.uk particularly this page which has all the information you need on PV

mpnvoice.org.uk/about-mpns/...

Maz

Hi. I am sorry that you are going through all this. I feel very lucky in that having moved several times since diagnosis I have seen many different GPs and haematologists and really only once did I come across a GP that totally wouldn’t listen to me. He almost refused to give me a flu jab on the grounds that I couldn’t possibly be taking a chemo drug as my hair hadn’t fallen out!! Enough said!

As the language centre is situated on the left side of the brain (sometimes reversed if you are left handed) it would seem very possible that speech could be temporarily affected if you are experiencing a TIA. I’m not sure why a neurologist or haematologist might have a problem with that? Some doctors hate the fact that the patient sitting in front of them appears to be quite knowledgeable and immediately go into defence mode. Communication does not appear to be anywhere on the list for doctors training. It makes the situation very difficult for you as the patient when a doctor will not treat you as an educated individual. It is possible that doctors feel that we have gone to them for an answer to a problem and if they do not know the answer to the question they try to make themselves feel superior by putting the patient down. I have been lucky that most of the consultants I have come across have allowed me to be a joint decision maker in my treatment and have acknowledged that MPNs are not their strong point. The simple answer I guess is to find a doctor you can relate to and who is willing to discuss your problems with an open mind. However this solution is sometimes not that easy to do

I hope you get lots of responses with similar experience to yours so you have backing to prove your point. I am sorry that you need to resort to that though

Very best wishes, Jan

Hi

I had these episodes for many years prior to being diagnosed with ET JAK2+. I had TIA after TIA. Right side of my vision would go, words were a mystery to me. Not only could I not pronounce them but if I saw them written down, they were like a foreign language to me. This would wear off, sometimes after 20 minutes but nearer later in my experience, it could take hours. After these episodes, I would have around 3 weeks of being severely fatigued. It was only after I began having TIAs more frequently (every week) that tests were carried out (including lumbar puncture) and I was diagnosed (March 2018).

I was already taking clopidogrel (due to TIAs) because aspirin is not my friend..and after a short spell on hydroxycarbamide, I am now successfully using Pegasys to control my platelet production.

Since diagnosis and subsequent (took a few months) prescription of pegasys I have had no episodes of this type. that in itself suggests to me that the platelet over-production was the cause of these episodes.

I hope this helps. This has been my experience and I'm sure I am not the only one! ATB

My advice to you Jilly would be to keep at it until you have a confirmed diagnosis. I lost the use of my right leg back in 2012 - I couldn't feel it or use it... I had no other symptoms. I spent 14 days on a stroke ward, where they diagnosed 'possible' MS. My MRI showed lesions and large white matter damage. After I was discharged from hospital I started 6 months of intensive physio to get me walking again.... and that was it! No follow up given. I had to ask for further testing to get to a definite 'MS' diagnosis. After many of those tests it was discovered that I did not have MS, but there was something 'not right' with my blood which needed further investigation. Again no real explanation given and no appointment made for follow up.

I then moved to a new City, which meant a new GP. Shortly after moving I had an unexplained blood clot in my right arm. I went to see my GP and she also noticed that I was itching my legs and body - I'd always felt itchy, so thought nothing of it! My GP ordered blood tests and another MRI.

To cut a very long story short. It was discovered that back in 2012 I had had a stroke, not MS and the stroke was caused by my thick sticky blood and PRV.

I also suffer from migraine, which causes visual aura - and a numb tongue, which affects my speech ( I sound drunk and stutter my words)

I really hope you get to the bottom of your issues soon - you really have to be a persistent PITA (Pain In The As*) and keep at them until they listen to you. After all at the end of the day it's our health, and we know when there is something not right.... I remember saying to one uppity Dr "Legs do not stop working for no apparent reason... and brain lesions do not appear without cause, so it's your job to find out why it happened"

Good luck. Kari.x

I cannot thank everyone enough for the wonderful responses I have received regarding my post. I am going to print off all the replies and send them to my Haemotologist and the Neurologist to prove I am not some crazy lady who was wasting precious NHS time. When he finally decided to do another MRI I refused at first then he asked me why. I told him that his attitude made me feel I was wasting his time and he obviously didn’t believe what I was telling him. I said that I was glad I had my husband with me to back up my story. I swear that he was dying to yawn into his hand and roll his eyes. Having PV has taught me to put my foot down and prove I know what I am talking about as I am living with a condition that a high number of medical specialists don’t even know about. It’s a shame that we do have to fight and I know it’s a high number of members of this forum that have struggled to get their case across. Thank you again to everyone

Hi jilly and everyone who has responded. It's so hard when the supposed expert denies our experience. I have been diagnosed with PV for nearly 4 years. It was my gp I had to battle with, consultants have been fine, mostly, though my local hospital no has no consultant currently so I have to go to the next town. I have had 2 TIAs, visual migraines when haemcrit high, almost constant fatigue and other odd issues. I will download the symptom list suggested by Maz. There is a lot to deal with and understand, thank you all for keeping this support system going.

Mal

I have just begun a formal complaint about my less than wonderful treatment at my local hospital, in particular the last heamotoligist I saw. It's your right to do that if you feel that you have been treated badly. It's made me feel better, just doing that! Best wishes, sarahjane.

Def have this. Have trouble reading aloud especially. It is scary.

Hi I am a 56 year old female with ET, in 2009 woke in the middle of the night thought my head was going to explode with pain. Attended A&E the doctor admitted me, she said the only reason she did this was a past clot in my leg some 18 years earlier.

In summary following an MRI with contrast showed a Straight Sinus Thrombosis, then "Blue Light Transfer" to Neurological Hospital, this was a blood clot in my brain. I was treated, however tolerated one year of the Neurologist telling me I was depressed.

Asked for second opinion saw a Professor of Neurology who showed me my scan & where the clot had been.

I had no follow up from the hospital discharge team, finally saw a neuro-psychologist & she completed a two hour assessment &confirmed the damage caused to my memory was from the clot.

Unfortunately we have to fight to get some doctors to believe us , don,t give up you are right about your risks.

You may also like...