Symptoms of MS? Just got back from nerosurgeon - nervous!!

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Symptoms of MS? Just got back from nerosurgeon - nervous!!

Postby shadyrn » Fri Oct 05, 2012 10:36 pm

Hope this post doesn't go too long!
Been to doctors for "episodes" about 4 times since 2005.
Currently dealing with what chiro. thinks is cervical radiculopathy. Cervical MRI does show C5-C6 degenerative disc disease, herniation.
Symptoms- neck, scapular, shoulder, upper arm, lower arm pain, sometimes fingers, headaches
So far- NSAIDS, oral steroids,Vicodin,muscle relaxants, ice, heat, traction, one epidural steroid injection- NO HELP
for years I have had hyperreflexia dr. said "so you just have brisk reflexes"
today new nuerosurgeon concerned with other signs: positive Hoffman's sign, all reflexes hyper, even in jaw - "jaw jerk"- says these are signs of upper motor neuron lesions- YIKES
Looking back over past few years, have gone to general doc for urge incontinence, I have muscle tics occasionally on eyelid and thigh. left outer thigh feels "dull" not exactly numb, but it tingles and feels itchy, feels worse in bed when I notice it- annoying! ulnar neuropathy- both hands numb in morning, legs shaky when going down stairs. plantar fasciitis and elbow tendonitis that is taking SO LONG to heal
I am a nurse and probably know too much- I feel like a hypochondriac!
So plan is to finish round of epidural steroids and come back in Nov. He mentioned head MRI.
My question- should I in the meantime also get in to see a Neurologist, get testing done sooner? I'm feeling time-sensitive, since I met my insurance deductiblle, all these things would be covered 100% until end of year, especially if MRI coming,
So yes I am a nervous wreck and tend to obsess on looking things up (I can see the doctor's eyes rolling when patients say, "I read on the internet"- one reason I hate to call my PCP- he makes me feel like I am a pain in the ass). I would just like to hear what others' experiences were on the road to diagnosis. Thanks so much for reading all this!
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Re: Symptoms of MS? Just got back from nerosurgeon - nervous

Postby lyndacarol » Sat Oct 06, 2012 10:07 am

Welcome to ThisIsMS, shadyrn. I offer you my standard action plan suggestion:

First, you may not have MS at all; as you probably know, it is a differential diagnosis – made by ruling out other possibilities. Very often, it is not easy or quick to diagnose. IF you do have MS, you have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas. We do not agree necessarily in our thoughts on MS; you will probably not agree with some of us either; we only ask for tolerance when we express unconventional ideas.

Second, I suggest that you first work with a GP or internist, with whom you are comfortable, who is compassionate and who enjoys being a "disease detective." I am not sure that a specialist, a neurologist, is necessary right at the beginning of your investigation. I tend to believe that if you see a surgeon, he will find a solution in surgery; if you see a neuro, he will only see the problem/solution in neurology. I just read an article that summed this up well: "doctors are experts in, and only test for, those parts of the body in which they specialize." A GP can order the tests necessary to rule out some possibilities. (By the way, your symptoms are REAL; you are NOT a hypochondriac!) Start at the beginning with a thorough physical, baseline examination including blood tests for your cortisol level (elevated with stress), glucose AND insulin levels (these are two DIFFERENT tests, as you know), thyroid hormone levels (TSH, Free T4, Free T3, Reserve T3, and antithyroid antibodies), even a liver profile, and CRP (C-reactive protein) test (indicating inflammation). Ask for a copy of all your test results for your own file. Personally, I suspect insulin involvement and insulin resistance in skeletal muscles, this could play into your muscle weakness and spasms, many of your symptoms.

Third, if you like to read and if you do have MS, start your reading with two books: "Multiple Sclerosis: The History of a Disease" by T. Jock Murray, OC, MD, and I think "The Multiple Sclerosis Diet Book" by Roy Swank, MD, PhD and Barbara Dugan is a good second book to read or even have. You may be able to get these through your local library.

Fourth, and most importantly, from this day forward, I encourage you to eat a healthy diet (a good idea whether or not you have MS). Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- removing all sugar (including beer, wine, etc. which have sugar), removing all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), removing all trans fats (These also increase insulin.), and removing white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. Personally, I think that excess insulin plays a great part in MS. My suspicion is that Fatty Liver Disease is also involved, since visceral fat (belly fat) secretes cytokines (like poison to the internal organs), which lead to increased insulin, which leads to inflammation which leads to more visceral fat… And the cycle goes round and round. Diet is important; in fact, you may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com).

By the way, I had surgery (cervical laminectomy) for a herniated disc before I was finally diagnosed with MS; it did not improve my symptoms since the disc diagnosis was incorrect– mistakes are made even at the Mayo Clinic. They missed on my MS diagnosis; I urge you to go slow.

We are here to listen, to help in any way we can.
All the best to you.
Last edited by lyndacarol on Sat Oct 06, 2012 5:41 pm, edited 2 times in total.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Symptoms of MS? Just got back from nerosurgeon - nervous

Postby shadyrn » Sat Oct 06, 2012 12:07 pm

Thank you for the reply- it looks like my first step is to change from my current GP- i dread calling him or going to see him- he's the one that makes me feel like a hypochondriac! Another big concern right now is the time dr's appointments take- I am the main breadwinner and have already taken time off. And the diet issues- I know I need to make changes, and with pain and stress I know I emotional eating!
So I guess the journey is about to begin- I have always valued forums to hear of other's experiences- it's priceless!
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Re: Symptoms of MS? Just got back from nerosurgeon - nervous

Postby lyndacarol » Sat Oct 06, 2012 3:53 pm

shadyrn – I admire your attitude and I think you're on the right path.

About changing from your current GP… If you dread calling him or seeing him, could you collect recommendations for another doctor from friends and simply start all over with someone new? A written request to transfer your records should be possible through you or through the new doctor's office without your personal contact with the old.

About the time for appointments… I don't have a good suggestion. I understand the difficulty in taking time off. Is it possible to exchange work hours with a coworker on the day of an appointment? Vacation time? My dentist offers evening appointments one day a week – do GPs ever offer the same?

About stress… I'm sure you know that this raises the cortisol level in the body; cortisol (as well as the glucocorticosteroids you have taken) raise blood sugar (glucose), and raise the insulin level in turn – not a good thing, if my suspicion that excess insulin and insulin resistance proves to be correct. By the way, insulin is known to thicken and and stiffen the smooth muscles; the detrusor and sphincter muscles of the bladder are smooth muscles – you did mention a past history of urinary urge incontinence, didn't you?

My ideas are unconventional; in fact, they may be REALLY "off-the-wall"; I have no medical background, you DO. Please take my suggestions with the good intentions and best wishes I mean to offer.
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Re: Symptoms of MS? Just got back from nerosurgeon - nervous

Postby shadyrn » Sun Oct 07, 2012 8:43 pm

Thank you again for the responses. I will get a new doctor, no uneasiness doing that, I should have a long time ago!
As far as the timing, my concern is about insurance- I have a high deductible plan, so I pay a lot out of pocket, but by this time I have met my deductible and it would all be covered 100% in this year- once January hits I'm back to square one and paying out of pocket, so to me time is of the essence.
It wasn't until I left the office and thought of the "episodes" I have had in the past 8 years- the incontinence, neck issues, ulnar neuropathy both arms, shakiness going down stairs, and my left thigh has been numb and tingling especially at night ( I looked that up and it can be due to excess weight- last thing I wanted to do was see my GP and be told again to lose weight)
So it will take some juggling, and my job situation will be fine- I have the freedom to go for appointments no problem.
I know the stress doesn't help! And my grandmother just passed away this evening, so I am sharing none of this with my mother- she worries like you can't imagine! Yes, life is a bit much right now nd now I feel I have this health worry.......It helps me to hear from others, so thank you.
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Re: Symptoms of MS? Just got back from nerosurgeon - nervous

Postby lyndacarol » Mon Oct 08, 2012 5:21 pm

I am so sorry to hear that you have lost your grandmother; my grandmother was so very important to me – I still miss her and always will.

You are now an important part of this website; I speak on behalf of all of us when I tell you that we are glad you share your feelings, experiences, and questions with us.
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Re: Symptoms of MS? Just got back from nerosurgeon - nervous

Postby shadyrn » Mon Oct 08, 2012 5:49 pm

My mother, aunt and myself went to my grandmother's GP, he has been with the family over 40 years and will even be at the funeral. his compassion is amazing. I took him aside and told him what the Nuerosurg. said, he said he would see me immediately- Grandma must be watching over me- appointment Wednesday
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Re: Symptoms of MS? Just got back from nerosurgeon - nervous

Postby shadyrn » Sat Oct 20, 2012 7:58 pm

So, I had my Brain MRI Friday afternoon, and asked for a CD. So of course I came home and looked at it. I do see white spots, especially on the post contrast- they are like little christmas lights, around perimeter, and around the ventricles- very little and quite a few. When I look at things online, it seems lesions are more cloud-like, and bigger. Yes, I know the dangers of looking at this myself and comparing it to things online- having the MRI on a Friday sucks- nothing will get looked at or reported until Monday I suppose.
Which of the MRI views are used most often/show lesions the best?
Is there anywhere on this website to post pictures?
I am REALLY trying to keep calm until I get official results!
My sister is convinced everything is related/caused by my huge addiction to diet coke and that's all- I don't know how credible the studies are on this theory.....
Any insights at this point? Can I call the hospital Monday and ask what the report says, or do I have to wait until my doctor's office calls me (who knows how long that will take!)......AAARRRGGGGHHHH!!
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Re: Symptoms of MS? Just got back from nerosurgeon - nervous

Postby NHE » Sat Oct 20, 2012 10:02 pm

shadyrn wrote:Is there anywhere on this website to post pictures?


Welcome to ThisIsMS. To post pictures to the forum they must be hosted on an internet accessible server. It's easy...

Here are some threads to get you started.

Posting Pictures
introductions-f20/topic3242.html#p20842

FAQ: How do I post a picture to the forum?
site-support-f2/topic5284.html#p40760

FAQ: Links to reviews of image hosting sites
site-support-f2/topic5284-15.html#p161827

I am REALLY trying to keep calm until I get official results!
My sister is convinced everything is related/caused by my huge addiction to diet coke and that's all- I don't know how credible the studies are on this theory...


I don't know about MS, but chronic consumption of beverages containing phosphoric acid can lead to osteoporosis.


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Re: Symptoms of MS? Just got back from nerosurgeon - nervous

Postby blondie33 » Thu Nov 01, 2012 8:43 am

What did your results say?
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Re: Symptoms of MS? Just got back from nerosurgeon - nervous

Postby shadyrn » Thu Nov 01, 2012 6:09 pm

thanks for asking- only thing that showed up in report was a 3mm low signal lesion, "most likely calcification or previous hemorhage"- my PCP said this was nothing. so I guess no lesions making MS likely? I see the neurosurgeon tomorrow- i don't think I can avoid surgery any longer in a lot of pain. as far as any other issues, I see nuerologist Nov 12. I don't know what to think, but PCP doesn't seem too concerned- pain from the cervical disc issue is consuming me anyway. we'll see!
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