New here, scared, lots of questions

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New here, scared, lots of questions

Postby thisiswater » Wed Feb 03, 2016 12:10 pm

Hi everyone!

I'm so happy to have found these boards. I'll try to keep this as short as possible.

I had optic neuritis in 2009. It resolved and, while I had an MRI that showed a couple of v. small lesions, the neuro said they were more typical of migraine and that was that. My vision was restored.

In 2010 I had weight loss surgery (sleeve gastrectomy, not a bypass) and had felt terrific for about 3 years. Lost the weight, ate well, no joint pain.

Then, a couple of years ago I had a bout of vertigo, but it went away with meds and I didn't think anything of it. Within the past 6 months I had about a month where every morning I woke up with some kind of numbness or another, often just pain in one arm, one day my entire body was in pain. My pcp didn't make much of this (!). I also had strange sensations in my feet, as though there were cotton balls stuck under my toes.

During this time I was diagnosed with 2 herniated discs and have cortisone injections at the site once or twice a year with good result.

This past December I was lifting a VERY heavy leather chair and had the worst headache I can imagine. ER diagnosed exertion headache and ordered an MRI to rule out aneurysm/masses. Also had CT scans and blood work. My pcp noticed new lesions and sent me to a neuro, which is where I am today. I was able to get the 2009 MRI to him and he noticed more lesions in the current MRI. Called me today to said he's thinking MS and wants me to have a lumbar puncture, but wants to see me first on Monday. Which I think is great.

(Also, since 2009 I've had many stressors: a college daughter with learning disabilities and the emotional baggage to match, placement of both my dear parents in assisted living, the death of my father, my mother's dementia, the loss of a job I loved with all my heart, moves, a dear friend with leukemia and another with Parkinson's. Just a show.)

I have lots of questions and don't want to overwhelm, so here goes:

- Is a lumbar puncture still *really* necessary I know lots of people refuse to have them.
- Re: **diet and supplements and am curious as to where you all think I should start**

- Should I ask my neuro to do a nutrient work up before the spinal tap? I know Vit D and B vitamins are issues.
- Finally, I have seen Terry Wahl's "Ted" talk and while I'm impressed, I realize she's but one anecdote. I DO want to change my
but I want food that is delicious. To that end, I have ordered: The Zenbelly Cookbook: An Epicurean's Guide to Paleo Cuisine.
The other books just seem so ascetic

OK, enough for now. I welcome your responses.
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Re: New here, scared, lots of questions

Postby scsi » Wed Feb 03, 2016 12:34 pm

Hi!

thisiswater wrote:Is a lumbar puncture still *really* necessary I know lots of people refuse to have them.

general-discussion-f1/topic27347.html

thisiswater wrote:diet and supplements and am curious as to where you all think I should start

First off all, wait for your dx and discuss everything with your neuro first!

;]
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Re: New here, scared, lots of questions

Postby NHE » Thu Feb 04, 2016 12:47 am

thisiswater wrote:In 2010 I had weight loss surgery (sleeve gastrectomy, not a bypass) and had felt terrific for about 3 years. Lost the weight, ate well, no joint pain.

Many people who have had weight loss surgery are at risk for a vitamin B12 deficiency due to malabsorption. A vitamin B12 deficiency can cause neurological symptoms and irreversible disability if left untreated. Having had weight loss surgery, your doctor should be testing your B12 levels on a regular basis. Please read the book "Could It Be B12? An Epidemic of Misdiagnosis" by Sally Pacholok and Jeffrey Stuart. You can also review the following topic which discusses many aspects of B12.

natural-approach-f27/topic24857.html
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Re: New here, scared, lots of questions

Postby kw202 » Sat Feb 06, 2016 7:28 am

Have you had your D and B12 levels checked? Other tests to rule out MS mimics?
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Re: New here, scared, lots of questions

Postby thisiswater » Tue Feb 09, 2016 2:00 pm

NHE and kw202: I had a much simpler form of WLS, not a bypass (which requires vigilant supplementation). I do take a multi, Vit D, B12 and Fish Oil daily and will have my levels checked again soon. I live in New England where is is hard for *anyone* to have adequate Vit. D (especially in winter). I've decided to go forward with my LP (lumbar puncture/spinal tap) next week and will be back here often to ask about treatment options. I know next to nothing about MS drugs!
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Re: New here, scared, lots of questions

Postby NHE » Wed Feb 10, 2016 12:01 am

thisiswater wrote:I know next to nothing about MS drugs!

If you're diagnosed with MS, your doctor will likely give you lots of glossy brochures about the drugs with pictures of smiling happy "MS" patients and ask you to essentially "pick a drug, any drug." Inside each brochure, in an almost hidden pocket, you should find the Doctors Prescribing Information on the drug. Throw the rest of the pamphlets away. The people are probably paid models anyway. The Prescribing Information is what you're after. If you can't find it in the pamphlets, then you can get them from the web, e.g., avenex.com, tecfidera.com, copaxone.com, etc. Read the Prescribing Information. Take notes. Get a medical dictionary from a used bookstore and look up every word you don't know and write down the definition. The prescribing Information is the text that was approved by the FDA to go along with the medication. Everything else is overt marketing hype. I did all of this when I was diagnosed. It took a month or so. I wound up knowing more about the drugs than my neurologist did. That was 1999. I wound up choosing Avonex. It seemed like the lesser evil of the 3 drugs available at the time. I took it for 10 years. Now, in 2016, we know that Avonex doesn't prevent the long term progression of disability. Had I known this 17 years ago, I wouldn't have put up with the side effects. Simply stated, they were bad. Your mileage may vary.
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Re: New here, scared, lots of questions

Postby thisiswater » Sat Feb 27, 2016 5:39 pm

@NHE Which drug did you switch to after the Avonex and why? I have started to read about some of the drugs others take and, yes, the fine print is pretty scary. I see my neuro on Tuesday to discuss treatment options. Are you aware of which drugs have the highest efficacy balanced by fewest side effects? I'm really after med information now. Many thanks in advance.
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Re: New here, scared, lots of questions

Postby NHE » Sat Feb 27, 2016 11:22 pm

thisiswater wrote:@NHE Which drug did you switch to after the Avonex and why?

I have not started on another prescription MS DMD since stopping Avonex. I'm SPMS now and the choices are pretty slim and I have yet to come across one that interests me.

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