Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Aphasia In Scleroderma


  • Please log in to reply
25 replies to this topic

#1 winnie97

winnie97

    Bronze Member

  • Members
  • PipPip
  • 22 posts

Posted 10 January 2012 - 08:32 AM

Hi,
I was diagnosed with systemic sclerosis 2 years ago; for the last 18 months or so I have been having cognitive problems. When I spoke to my specialist she dismissed my symptoms and said that Scleroderma has no effect on the brain; anyway after a bit of research I have found several articles in reputable medical journals about brain involvement. My cognitive functions are deteriorating to the point where now I can barely understand what people are saying to me and I have to get them to repeat several times even a simple sentence. People are beginning to think I'm going deaf which I'm not ; it is very frustrating for me and whoever is talking to me, also I constantly can't seem to get words out; they are on the tip of my tongue but I can't get them out. My sense of balance is off as well; when I write things down (this was typed for me) I have the right letters for a word but in the wrong order, this can happen a few times in a short paragraph .Reading is not a problem but comprehension of what is written is.

Does anyone else out there have any of these symptoms? I read one article which seemed to fit me which was talking about receptive aphasia and another on cerebral hypoperfusion. I'm due to see my specialist this Friday but am reluctant to mention what's happening as she dismissed it so much the last time and laughed when I asked if Scleroderma could effect the brain.

Any help would be great, by the way I live in England
Diana.

#2 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 10 January 2012 - 03:22 PM

Hi Diana,

Sorry to hear that you're suffering with such worrying symptoms. I haven't actually experienced these problems myself; although I expect some of our members may have and they might perhaps be able to give you more first hand advice.

I would just mention that there are many possible causes of cognitive problems, brain fog, headaches, migraines, dizziness, balance problems and vertigo and they may not necessarily be caused by Scleroderma or by vascular complications of Scleroderma or other illnesses. I would be a bit cautious reading up symptoms and details of other illnesses such as aphasia or cerebral hypoperfusion as it's quite possible to receive confusing and frightening information on the internet and many symptoms can mimic these diseases. I've included links from our medical pages for you to Brain (Cerebral) involvement in Scleroderma and Cognitive and cerebral hemodynamic impairment in scleroderma patients which I hope you'll find interesting and helpful.

Despite your rheumatologist's dismissive attitude and as you're feeling very worried, perhaps you could still describe to her the problems that you're experiencing when you have your next appointment. It might help if you could take a friend or relative with you to emphasise how distressing this is becoming for you.

Do let us know how you get on with your appointment on Friday.

:emoticons-group-hug:

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#3 miocean

miocean

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 10 January 2012 - 06:56 PM

Diana,
I understand your frustration and you must be very worried about this. I have had cognitive decline as well, not as severe as yours, but know I am not as sharp as I once was. Right at the time I was becoming sick I would find myself writing a word and leaving out a letter. Being creative I could usually fit it in so it was noticed but became concerned, especially professionally. Over the past 7 years there has been more of a decline, I have notes within notes and piles on piles of important papers so I don't forget what needs to be done. I have a very low concentration level, it is difficult for me to read or watch t.v. The only thing that is reassuring is it seems I am not alone, everyone I know complains about forgetting things, even those much younger than I.

There were several instances in the U.S. in the past year or so when newscasters would start to speak gobbly-gook on the air. These were normally bright, healthy individuals and there is a theory that it was from microwaves of some sort of, almost the same kind cell phones emit and why they say you shouldn't hold them up to your head. We are also overloaded with information these days, making it difficult to remember it all or call it up when we need to.

I would be concerned if one of my doctors laughed when I told her my symptoms. But I would still continue to bring it up and have her document it. As Jo mentioned, be careful of self-diagnosis based on what you read, it can put all kinds of ideas in your head and be pretty scary.

Have you looked at your medications? They can affect us in so may ways. Perhaps you should see a neurologist...?

Best wishes at your specialist this week.

miocean
ISN Artist

#4 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 641 posts
  • Location:Auckland, New Zealand

Posted 10 January 2012 - 09:22 PM

Hello Diana,
I am writing mainly to add to what Jo and Miocean have said, that although your doctor was rude enough to ridicule your concern, you are certainly not alone.

At 67 I am probably considerably older than you and could hold my age responsible for my shortcomings in this area, but in fact I think I had more trouble when I was younger. Our children were quite used to my gobbeldy-gook. I remember being in the car with my kids and a couple of others and hearing my son reassure his friend that "if Mum calls a truck a tree don't worry, we are used to it".

I don't think it is actually confined to Sclero sufferers,and in fact people I know with other Immune disorders also make the same observations.

For a more sympathetic reaction, maybe the suggestion of seeing a Neurologist is a good one. I have suffered terribly from Migraine all my adult life and previously consulted a Neurologist. I have had a couple of CT scans of my brain to be sure nothing nasty was going on, and after the second one, when I was in my mid 50's I guess, I was told that a small stroke has been noticed. The advice I got was that it was not at all surprising, in fact if most people of my age were scanned, similar things would be found. In my case it affects my balance, and so helped explain that problem which I was having. As you will have found in your reading, there are all sorts of similar things which could be causing your difficulties and if you received a proper and sensible opinion it would be more helpful.

Just remember, nominal aphasia is the label for the affliction of forgetting names - somehow I can always remember that, probably because it makes me feel clever :emoticon-dont-know: .

Warm hugs and best wishes from the upside down side of the world

JudyT



.

#5 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 11 January 2012 - 05:57 PM

Hello Diana

When you say specialist do you mean a scleroderma specialist? I am also a scleroderma patient here in the UK and it's my opinion that here in the UK the assumption is that scleroderma does not affect the brain but as you can see from the information here at ISN there can be brain involvement in scleroderma.

When you see this specialist next I would preface the discussion about these symptoms by explainig my concern and ask that she not laugh again, keep it to herself and make a referral to neurology for you. If she isn't a scleroderma expert then ask she refer you there as well.

As you're in the UK the Scleroderma Society runs 20 local groups around the country, they're a great support and you don't even have to be a member to attend. It's really helpful talking to others with scleroderma (as we all know!) and it's even better face to face.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#6 amberjolie

amberjolie

    Silver Member

  • Members
  • PipPipPipPip
  • 197 posts
  • Location:Ontario, Canada

Posted 11 January 2012 - 09:14 PM

I'm definitely having issues with short-term memory, thinking of the right words, concentration, and so on. I get migraine auras, but I've always had them, so I don't know if they're getting worse or not. I do find myself losing balance for no apparent reason (and I'm not on much in terms of medication, but maybe it's still that).

I'm on a Sjogren's board as well, and there's been discussion there on brain functioning as well, so it could be an autoimmune thing. Or perhaps it's fatigue related, and since fatigue is huge with autoimmune diseases, maybe that's why we're noticing problems.

#7 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 12 January 2012 - 10:19 AM

Hi Diana,

Count me in, with regard to the symptoms you related to us in your post. Exasperating as it is, it can also be worrisome and you have every right to take exception to that particular doctor's rude response to your inquiry; absolutely inform this doctor that her response to your question was very unprofessional and what it indicates (is her lack of knowledge/ignorance). No question is a dumb question and that includes questions pertinent to ones' health. I hope this doctor was "just having" an "off" day, so giving her the benefit of the doubt may be the thing to do. As a matter of fact, I would suggest (to her) that she become an ISN member so that she might be able to step into your shoes, as well as give herself an opportunity to glean great information from our awesome sites/forums!

In the meantime, we have your back!

Note* As I'm sure you are able to surmise, I'm not happy with how disrespectful your doctor was with you; Thankfully, you received some good information/links from others here.
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#8 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 13 January 2012 - 02:23 PM

Hi Diana,

I can empathize with you as I have experienced many cognitive impairments, some of which have gradually improved a little bit over the years and some that can strike again when I'm very fatigued or have poor sleep for a stretch. My cognitive issues were very significant and they started in before I was diagnosed with scleroderma. Back then, the scleroderma experts had a slogan that scleroderma could affect "any part of the body but never the brain or the eyes."

In recent years, even they have come to realize that there are no exclusions. Systemic sclerosis can, literally, affect any part of the body, including the brain or the eyes.

It's very likely that your expert vividly recalls the slogan "never the brain or the eyes" and has just not been updated on the recent findings regarding possible/suspected scleroderma brain (or eye) involvement. However, that does not mean that your cognitive difficulties are automatically due to scleroderma.

Please keep in mind that I'm not a doctor, in fact, I have no medical training at all. In my very humble opinion, based on my personal experience and from the abstracts on our main website, your symptoms should be taken seriously, and they need to be assessed from scratch, considering all possible causes including scleroderma brain involvement, fibromyalgia, medication side effects, vascular involvement (including TIAs or 'mini strokes'), sleep disorders, mental health issues (if any), ear disorders (such as autoimmune ear disease, which can also cause balance problems), and all other illnesses, such as Multiple Sclerosis (which can also occur in overlap with scleroderma), and Alzheimer's, etc. ad infinitum.

That list is not intended to scare you, but rather to broaden your perspective on potential causes and also to let you print this out and bring it to your doctor, along with our website address of sclero.org. We are by far the most reliable source of information on scleroderma in the entire world, for patients and doctor's alike, with thousands of pages of up-to-date information in over 20 languages and a Medical Advisory Board that encompasses the globe.

I have recovered much of my cognitive function due to treatments for many things, including severe chronic insomnia, fibromyalgia, tympanosclerosis (ear involvement and hearing aids), TIA (mini stroke), labile hypertension and orthostatic intolerance, and migraines, to name just a few. I have also removed medications that caused some side effects, made many anti-inflammatory changes in my diet, and very gently increased my mild physical activity. I carefully balance my schedule allowing for lots of rest and focus on relaxing and refreshing activities and lifestyle, reducing stress as much as possible.

While I was at my worst, I focused on doing what I could do, which wasn't very much at all (I was bedridden and in a wheelchair for a long time.) But despite everything I found I could still draw and paint. Painting is nice since you can do abstract things if need be, and who's to say it's no good? It was also very relaxing. But I could not drive, follow a recipe, and I gave up watching TV as it was too hard to follow a story line. By the time the commercial break was over, I couldn't tell you what I was watching in the first place. Happily, though, I still enjoy a life without TV as I found it was a very unnecessary source of stress for me.

Don't give up hope, as obviously there are a great many ways to improve cognitive function, especially by finding out what is causing it and being open to the idea that it can be caused by many things at once, too. I bought math cards at the drug store, the ones that children use to learn math, and used them to re-learn addition, substraction, and multiplication. For some dumb odd reason, "dishwasher" was my favorite go-to word and I would use it generously, in favor of any other noun. "Oh no, I forgot the dishwasher!" would mean, for example, that I had forgotten my check book.

Now, speaking of checkbooks, I discovered that they are incredibly handy for a surprising reason -- when you forget your name, no fear, it is written right there! So never leave home without your dishwasher, okay?

And hie thee to a doctor, to get to the bottom of things and start on your journey to improved health. Even with scleroderma, health can improve, when we get to the source and devise improvement strategies.

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#9 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 13 January 2012 - 03:21 PM

Shelley I love reading your posts, they're so encouraging and funny at the same time. It must be something about dishwasher because when I have braing fog every kitchen appliance is called a dishwasher, put your dishes in it yes, not your clothes to wash, or to dry or you food to cook or to keep cold/frozen. Well unless you're taking instructions from me that is!

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#10 barefut

barefut

    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 16 January 2012 - 11:45 AM

Hi Diana -

I too have cognitive impairment. Can't say if it is meds, lack of sleep or the sclero - nevertheless I still call it sclerobrain. It was quite disturbing at first especially because I was a personal banker! Ha! Ha! Don't know why that is funny but I can laugh now that I am no longer employed and it does not stress me out anymore.

I'm sorry your doctor poo-poo'd your concerns. That is so very uncool. Regardless of naysayers, I believe scleroderma DOES have a cognitive element. THANK YOU SHELLEY! It's time to run my checkbook.

Best wishes to you Diana ♥

#11 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 16 January 2012 - 01:04 PM

Hi Barefut,

Why, even I can now laugh at the fact that you used to be a personal banker!

Can you imagine the mess and fuss that would have created, if you and I had collided on a bank transaction? I'd be sitting there, asking you what my name was, and you'd be looking at my checkbook, wondering how it happened that you and I had the exact same name! :emoticon-dont-know:

WarmHugs,

Shelley
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#12 barefut

barefut

    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 16 January 2012 - 04:03 PM

LOL!!! (lots of love)

#13 Sclera4evr

Sclera4evr

    Newbie

  • Members
  • Pip
  • 1 posts

Posted 15 July 2015 - 07:09 PM

I have also been diagnosed with systemic sclerosis and the diagnosis of this rare disease took a great many years and a terrific amount of frustration with not only my doctors, but with myself. My multiple symptoms started when I was in my early twenties or at least that is as far back as I can recall them. However, my doctors were consistently dismissive of me. They continually told me that I was too young to be experiencing what was happening. I often felt like giving up and at times I was almost convinced that I was going crazy. But, with the right support, friends and family, . . . ok yes they absolutely helped me through. . . but ultimately, I often felt alone in the fact that I had to figure our how to stand up for myself and my health. Each and every time I went to a doctor, I had to be ready with written down questions and symptoms and/or things I had experienced that I felt were relevant. The fact is that the doctor is working for the patient. And I am not sure how things work in the UK, but here in the USA, at least in CA, due to the sheer number of patients that doctors must see in a day, there is often a feeling that we as patients must apologize for taking up the doctor's time whether we get our issue delt with or not. I have over time worked hard to overcome the tendency to walk out of an appointment feeling as though I just paid for my doctor to make me feel worse--incompetent (unable to complete questions or even a sentence because they have their predetermined list which they must get through in the 10 minutes they have scheduled, along with the 2 or 3 other people that have been overbooked). Unfortunately, fifteen years have passed since I started showing symptoms and I still struggle. The important thing is that I struggle and my voice is always heard and if it isn't (of course, I am as efficient as possible in respect of my doc's time--e.g. lists) I find a doc who is both respected in their field and respectful in their field. To all of those who have commented, I hope that you work to make your voice heard, not only with each other, but with those who care for you.

#14 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 15 July 2015 - 07:40 PM

Hi Sclera4evr,

Welcome to these forums!

I can understand how frustrated you feel about obtaining a diagnosis of Scleroderma; because of it's complexity it really is a very difficult disease to diagnose correctly. Many of our members have experienced the same problem ( the average time to obtain a diagnosis is six years) and as you have found it is important to be your own advocate and consult a Scleroderma specialist in order to obtain the best treatment.

I was very fortunate in that I was diagnosed and treated very quickly, thereby having a successful outcome from my treatment.

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#15 Ron

Ron

    Senior Bronze Member

  • Members
  • PipPipPip
  • 91 posts
  • Location:Canada

Posted 16 July 2015 - 05:43 AM

Let me be devils advocate here.  In my opinion we can't blame every heath problem on SD.  I had kidney issues back in 1990, I was diagnosed with SD in 1987.

After a 30 day hospital stay going through test after test, they did a biopsy on my kidney and it was determined that the kidneys were in no way related to SD.  I gained 40 pounds of water and was really sick.  I went on a chemotherapy and prednisone drug therapy for 6 weeks that put my kidneys into remission.  I have been in remission since 1992.

I also suffer from a severer case of obsessive compulsive disorder (OCD), I do not believe that is related to SD as I had it even when I was a kid.  It's so bad my psychiatrist says it’s the worst case of OCD he has seen in his career. At times I don't know what's worse, OCD or SD.



#16 quiltfairy

quiltfairy

    Silver Member

  • Members
  • PipPipPipPip
  • 165 posts
  • Location:mapleton , Iowa

Posted 16 July 2015 - 02:00 PM

Hi, I also have those problems but the doctors put it down as traumatic brain injury or closed head injury. I have mini seizures at times and those are the times I have a hard time getting my words out and making sense of what people are saying.

Have you ever had an electroencephalography (EEG) to confirm any of your symptoms? My neurologist is the one that did those tests; my doctors know I have seizures but have been unable to document any on an EEG at this point, but he also said it can take more than once to seizure.

Good luck with your doctor; I find that persistence is the best way to get my doc's to listen to me.

#17 xxx

xxx

    Bronze Member

  • Members
  • PipPip
  • 18 posts

Posted 17 July 2015 - 12:46 AM

Oh my goodness!  I thought my forgetfulness, constant list making, unable to concentrate on TV programs, not being able to understand peoples conversations and simple questions, forgetting how to spell words, unable to think of the correct word to use.......need I go on.........was part of getting old, but now after reading this thread it could all be part of our condition!  Another thing to mention to the GP!  I best book a whole afternoon with her! Hahahahaha!  

 

Will let you all know what response I get from her when I return!



#18 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 02 August 2015 - 11:52 AM

Hello Ron,

I hope you don't mind me asking but how long after the scleroderma did you develop OCD or did it come first?

You're quite right, of course, we can't just blame everything on scleroderma, we first have to be sure that it's the cause or catalyst.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#19 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 02 August 2015 - 12:04 PM

Hello Sclera4evr

Oh yeah, it's not long before you ditch the fantasy that all doctors are great and patient listeners when you have scleroderma, that's for sure!

Getting a diagnosis and finding your "voice" are achievements worth celebrating. Unfortunately many people, especially women, are made to feel they're hypochondriacs on the way to diagnosis.

Well done you and welcome to the forums, keep posting and take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#20 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 02 August 2015 - 12:16 PM

Hello Mothergoose

Yes, what is termed brain fog is a real symptom. Taken from our site, under brain involvement: "Systemic scleroderma is associated with brain (cerebral) problems, including poor circulation in the brain and neuropsychiatric problems including cognitive impairment."

I no longer have just the right word, oh come on, sometimes I struggle to find any word! I am often unable to learn new skills and often unable to remember. Needless to say, it's worse when I am tired. Pity that's a regular occurrence then, eh? Factor in regular medication and it's a wonder we remember our own names!

It's not just in your head, actually it is!

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)