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MRI imaging help - need a diagnosis -
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TOPIC: MRI imaging help - need a diagnosis -

Re: MRI imaging help - need a diagnosis - 4 years, 9 months ago #1278

  • helen
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Hi
Great news, he's the foremost expert in Arachnoiditis and he takes a personal interest. Please keep us posted.

Best wishes Helen

Re: MRI imaging help - need a diagnosis - 4 years, 9 months ago #1279

  • Kia Kaha
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I got a reply!!!!
_________

Ms. Reeves:

Your MRI study does indeed suggest that you have Class II adhesive Arachnoiditis.
I trust that this information will be of value to you and expedite appropriate therapy.

Charles V. Burton, M.D.
Sentinel Medical Associates
___________

so now opens a whole new chapter:
what do I do now?
How can I manage this?
What are the treatment options?

Thanks so much Helen, if it wasn't for you suggesting Dr Burton, I would still be floundering today trying to get it considered.

Re: MRI imaging help - need a diagnosis - 4 years, 9 months ago #1280

  • helen
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So pleased for you!! Hopefully your GP will accept the diagnosis and get clued-up on Arachnoiditis.

Where to go from here is a difficult question.... I would strongly advise you to avoid anything invasive. I took the route of pain relief with as few side effects as possible. My body is extremely sensitive to drugs so any that I've tried have always been at the lowest dose to start off with.

There's lots of info about treatments, written by Doc Sara, on this website.

I've only been on two - Amytriptaline (sorry can't spell) which stopped my bladder from working after a while. Then Kev told me about Pregabalin which is specifically for pain generated by the central nervous system. It has proved helpful, but I'm on a low dose 75mg 3 times a day.

I've tried a couple of "non-medical" things too!!

Helen

Re: MRI imaging help - need a diagnosis - 4 years, 9 months ago #1281

  • Kia Kaha
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I known about drug reactions I'm allergic to penicillin, maxalon. And intollerant to oxycontin, methadone, zoplicone, and especially gabapentin for which I became a suicidal freak out. My pain Dr accused me of Googling the side effects and faking them. That was the start of being labeled as psychosomatic.
That, after 2 years of trying to vet a diagnosis I was dumped by the public health system!
Its been a nightmare, I so hope now I can get the treatment needed.

Re: MRI imaging help - need a diagnosis - 4 years, 9 months ago #1282

  • helen
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Hi Kia
I've had arachnoiditis for 14 years and about 4 years ago was advised (by the same Neurologist who diagnosed A) that all my new symptoms were psychosomatic too. He prescribed 2 very strong antipsychotic drugs, which my family urged me to try. Like a fool I took them for a short while, then did some digging and discovered the Neurologist had been withholding test results, thereby deceiving me and my GP. Even with proof, my GP still stated that she did not believe "in the concept of Arachnoiditis".

You mentioned constipation - I follow a very low gluten diet and ensure to get fibre from salads and vegetables (not cereals) because they're water soluable. My gastric specialist is a Professor & Researcher on the effects of spinal cord injuries to gastric track and bowel.

Let us know how you get on - Helen

Re: MRI imaging help - need a diagnosis - 4 years, 9 months ago #1285

  • Kia Kaha
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helen wrote:

You mentioned constipation - I follow a very low gluten diet and ensure to get fibre from salads and vegetables (not cereals) because they're water soluable. My gastric specialist is a Professor & Researcher on the effects of spinal cord injuries to gastric track and bowel.

Let us know how you get on - Helen


I looked up a grain free diet and found the Paleo system of eating, which I have been doing for over a week now.
thepaleodiet.com/

see how that goes.

On the other front, the new GP sent a referal to a neurologist, who did not want me as a patient, so now a new referral to a neurosurgeon, and I havent heard back yet.
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