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Crinkley Brain

Hello all~ I am new to this community. My father was diagnosed with MS around 1970, so I have always had an intimate understanding of this horrible disease, and what it can do to both the people diagnosed and their families. I have had MS symptoms for many years, and have had utilized every justification and excuse as to why I don't have it. In 2008, a nurse I worked with pushed me into getting tested due to my constant clumsiness and falling. They called me Susi Slip and Fall. I was told after that MRI that nothing was wrong. I never read the reports(denial) and believed what i  was told. I have always been forgetful, foggy brain however, a few weeks ago I realized I was having some serious cognitive decline, as well as increased fatigue that caused concern so I went to a different doctor. I also got the report from 2008. Apparently, I was not ok. It showed two lesions in right frontal white matter, an one high in the left frontal lobe. Stating MS is a possibility. The MRI I had Monday was written with somewhat different language that was not as clear. It seemed to same the same thing with Multiple Scloratic plaques or demyelinating disease as possible diagnosis. I have an appointment with the neurologist next week. Ugh the agony of waiting.
I am scared and looking for some support, and I have a question.
I have read all the posts on tingling etc. Many times my brain  will feel like it's crinkling inside. Like a small electrical pulse  that runs through my head from ear to ear or just I the back, many times it's all over my head. It doesn't hurt it's bothersome and frustrating. Does that sound like anything you all have had?
Sorry for blabbering long post. Thank you

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572651 tn?1530999357
Let me add my welcomes to the mix - you have some good advice already so I won't repeat that.    As for the crinkly brain - I don't have that but I do get a strange whoshing feeling and actually hear noise behind my eyes - yes, my eyes.  You know that feeling deep inside when you yawn?  I get that in my eyesockets or behind my eyes.   Like yours, it doesn't hurt but is irritating.  I've not mentioned it before....    :-)
~Laura
Helpful - 0
5112396 tn?1378017983
LPF, please know that what is experienced with MS today often bears little resemblance to the MS of the 70s/80s when there was no treatment available. Today there are many treatments to choose from for those with RRMS, and more in the pipeline for those with more advanced forms.

Your understandable fears are coming from what you witnessed as a child in another era of MS. MS is generally slow-moving, but knowledge is power. The earlier and more consistently adhered to treatment, the better the prognosis. It's fantastic that you now have two MRIs for comparison. That's a huge step and one you should be proud of. The unknown can be terrifying. But once you know what you're up against, then you can start fighting!
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9264354 tn?1408743148
I'm still in the testing phase as well and yes it does take forever it seems. I get that funny feeling but I get what I describe as a mix between creepy crawly and pins and needles. I am seen rubbing my face frequently because of it. Most people ask me of I'm tired when they notice it. Hand in there and yes there is a lot of support here. It helps to know your really not alone.
Keep Hope,
Mamie
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Avatar universal
Thank-you Alex. Your words are really helpful. Very much appreciated
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667078 tn?1316000935
I am sorry you are scared. I have both MS and Cancer and spend  a lot of time having and waiting for tests. My first MRI showed MS but it still took years for a diagnosis. Neurologists like to take there time. This made me feel better to know. I thought I was being dismissed. No test rules MS in or out. I had 5 MRIs that showed MS a Evoked Potential Test and a EMG and  lots of blood work to rule other diseases out and finally a Lumbar Puncture. They would say it could not be anything but MS or you will be diagnosed with MS in the future.

It is good to know what is wrong. Just because you get MS does not mean you will get every symptom. I have a slow progressing MS. I see my MS Specialist every two years. Basically I get my care from my GP. There are a lot of things they can do for symptoms.

I used to worry about all the things that could happen now I just live me life. A lot of my life is at the hospital. I have a new puppy and I try to concentrate on that and the book I am writing.  I try not to worry. I realized worrying is trying to control the future. Now I let Doctors worry especially about tests.

The main thing is you are not alone there is a  lot of support her. If you are having symptoms they can address the symptoms even if you do not have a diagnosis. I waited with pain until after I had been diagnosed for a year.

My imagination of diseases are worse than the diseases themselves. I was so afraid of MS. It turned out I had actually had MS for over 40 years. I thought I was clumsy too. I feared so many things. Every case of MS is different. It turns out I have one of the slowest cases ever. Only people who know me well know I have MS.

Alex

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