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Aphasia In Scleroderma

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#21 xxx


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Posted 02 August 2015 - 08:47 PM

Hello Amanda.


I didn't realise 'brain fog' was a real symptom!  Should I mention this to the Royal Free when I have my appointment?  



#22 Amanda Thorpe

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Posted 03 August 2015 - 12:47 AM

Hello Mothergoose


Yep, it's totally real.


I don't actually know if there is a treatment for "brain fog"  but we don't just need to tell our main medical team about our symptoms to receive treatment. Some medication can make cognitive issues worse but your medical team can't take that into account if they don't know about it.


If a symptom is affecting your quality of life you've nothing to loose mentioning it, just bear in mind that sometimes the only thing doctors can offer is often a knowing smile!


Take care.

Amanda Thorpe
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#23 quiltfairy


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Posted 03 August 2015 - 03:21 PM

Yes, Amanda, that is so true about medication. I find when I start a new med I am in brain fog for a day or two, even some of them for a week, but my doctors do know about the memory issues and about the brain injury and when they start me on a new med if I do not come out of the fog within a week they are taking me off of it and trying something else. Sometimes I think we are all test subjects and we are lab rats, although it does seem to help in the end.

The one thing that I most wish is that the pain meds did not affect me so bad especially when I first start them.

Mothergoose, I agree with Amanda; talk to your doctors about every little symptom you have even if you think it is not important; it could be, in the whole scope of the picture.

I will keep you both in my thoughts.

#24 Shelley Ensz

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Posted 18 August 2015 - 07:47 PM

Hi Quiltfairy,

That's a great point you make, to be sure to mention all the symptoms!
Warm Hugs,

Shelley Ensz
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#25 deeyanlis10



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Posted 10 December 2015 - 02:37 AM

Hello , I am new to this site. 


I was diagnosed with Scleroderma 9 months ago,  March of 2015. I had many autoimmune symptoms prior to March. On Oct of 2014 I started loosing my voice. My doctors thought it was laryngitis, despite my not having any positives for infection of any type I was treated with multiple antibiotic prescriptions. Went through speech Therapy but nothing worked. No one could see anything wrong with my cords.  Needless to say after countless visits to the doctor and E.N.T's I was referred to an ENT  specialist in Botox injections. The result was that Botox was not a good option for me. Unfortunately I was not a good candidate for botox and was told it could cause me more harm than good.


I was then diagnosed with Paradoxical Vocal Cord Motion with risk of anaphylaxis. As of this date none of the doctors think that Scleroderma is associated wtih my voice loss however I believe it does. I should also say that none of the doctors have ever had any patients with Scleroderma nor were familiar with Scleroderma except for the Rheumatologist that diagnosed me. Unfortunately my health insurance was cancelled so I could no longer see any of my doctors for further evaluations or to see if they have learned anything new from my medical chart.


I strongly believe that with rare diseases, who can say with 100% certainty that voice loss is not associated with Scleroderma. I think as Sclero patients we have to make these doctors aware of what is ailing us. At one point, I felt and was made to feel as if  I was complaining too much to my doctors. When I started feel like my symptoms were neglected I realized it was my job as a patient to push the issue. It dawned on me that if I don't say what is wrong doctors will not be able to help. 


I hope you all have a blessed day. 


off topic... I intend on finding a way to bring more awareness to scleroderma in my area. If you are from my area feel free to PM me. I am looking for a support group or to start one. Feeling alone in this area. 


#26 Joelf


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Posted 10 December 2015 - 11:52 AM

Hi Deeyanlis10,


Welcome to these forums!


I'm sorry to hear that you've been diagnosed with scleroderma and are suffering with so many unpleasant symptoms. Unfortunately, it is a very complex disease and is extremely difficult to diagnose correctly. As you've surmised, many doctors are unaware of the symptoms and clinical signs, which is why we do recommend that our members, if possible, consult a Scleroderma expert, in order to obtain the best treatment available.


Scleroderma can affect the larynx and cause dysphonia (hoarseness or loss of voice), which can be evaluated with videolaryngostroboscopy. I hope that you will find the link I've included helpful and informative.


Now that you've joined our forums and community, you will find a wealth of knowledge, and support from our members.


Kind regards,

Jo Frowde
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