Think I have MS

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Think I have MS

Postby lostgrl85 » Tue Nov 27, 2012 6:48 pm

Hi everyone, I'm Jamie and I've not officially been diagnosed yet, but I am 95% sure that what I have is MS. I came on here because it is nice to know that there are people who actually understand what this horrible disease puts you through. That's one thing that no friends or family of mine will ever understand.

I've had problems for a while now. I had a weird numbing episode that presented like simple partial seizures in early 2009, but I don't think that was anything (it went away after starting and stopping Topamax). I had just started a very stressful job and couldn't sleep at night, so I think it was all stress induced. December 2010 brought on numbness in my left abdomen that traveled to my leg and foot and then disappeared after 3-4 months. I had left shoulder surgery in April 2011 and then in July 2011, my left arm and hand went numb. They thought it was related to the surgery, but after trying to figure it out, I ended up with a neck MRI that showed MS type lesions. My brain MRI had spots but nothing that would indicate MS (and I had one with the 2009 episode and absolutely nothing changed in the almost 3 years between MRIs). The arm/hand numbness finally went away, but before it did, I had a period where I felt electrifying sensations every time I bent my neck down. That has since gone away too. Early this year, my left leg started giving me trouble, and now, every time I get tired of walking (which doesn't take long anymore), it's like my leg practically won't work anymore and I'm just barely able to pick it up, move it in front of me and drop it on the ground. A couple months after that started came the bladder/bowel problems. I have terrible urgency with both and also frequency with my bladder (I usually go every hour and a half to two hours, except at night I usually only get up once and every once in a while, I can make it all night without waking up to pee). I also have horrible balance and I'm finding myself all the time losing my balance and having to grab onto whatever is closest to me just to stay upright. Now, within the past couple weeks, my whole chest area and around to my upper back has gone numb. I've gone to two neurologists, and the first one would only repeat unnecessary tests so I found someone who specializes in MS. Both of them say that my issues are minor (not when I'm a nurse and my leg is so bad that I don't know how I've managed to hide my deficit from my employers). I can't get the new one to even try to treat any of the symptoms I'm suffering. She keeps ordering expensive tests that I can't afford. When it came down to the spinal tap, I had to go through someone else but she was going to send a referral. When I gave the receptionist the info they needed, she kept stating that she can't do that. I then refused. In the three visits I've made there, they haven't gotten the billing right on anything (I switched jobs between visits and they either billed the wrong insurance or didn't go through insurance at all, leaving me with the headache, even though they had all the correct info). I've switched jobs again, so now I have to find another new neurologist, although I was going to switch anyway to avoid all the headaches of the last one. All this time I've suffered, and I've still gotten nowhere.

I bought George Jelinek's book and am in the process of reading it. It gives me hope that my life may not be totally over, but then I go to work and can barely walk back to my car at the end of the day (and there's no way to hide it from anyone who passes me by). I'm planning on giving the Swank diet a try once I finish my book in hopes that I won't have anymore symptoms. Plus, I'm pretty overweight so I can afford to lose a lot of weight as well. I do have a question about all this though. To those of you who have suffered through physical disabilities, do you think there is any chance that I will be able to recover from my leg problem? I can even handle the balance issue, but my leg problem is ruining my life and I'm at the point where I'm afraid I'm going to get fired from my new job because they're going to notice and then say I'm not fit for duty (and honestly, I'm not unless I have enough opportunities throughout the day to rest, but that's not an easy accommodation when you're a nurse). I can't afford to quit and take a desk job either. Plus, whenever my family talks about plans to go to 6 Flags or Disney World next year, I know there's not a chance in the world I could make it through those parks. After walking 1/2 mile, I can't hardly walk anymore. I used to be a runner too, and I was hoping that one day I could lose a bunch of weight and get back to that lifestyle, but that was before I realized I had debilitating neurological problems at the age of 27. Sorry this has been so long, but is there any hope of ever returning to a normal life again?
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Re: Think I have MS

Postby lyndacarol » Tue Nov 27, 2012 8:07 pm

Welcome to ThisIsMS, Jamie. To answer your last question… Yes, I think there is ABSOLUTELY hope of returning to a normal life! Although you have not specifically asked for advice, I offer you my standard action plan recommendation:

First, you may not have MS at all, but there is a possibility; it is a differential diagnosis – made by ruling out other possibilities, as you may know. Very often, it is not easy or quick to diagnose. Before expensive tests even existed to diagnose MS, doctors used to diagnose MS on the basis of symptoms and if they temporarily worsened when the patient sat in a hot bath for a while. I had "normal" test results initially (lesions were seen on my FOURTH MRI). 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 – my personal suspicion is that excess insulin is responsible for many MS (or "neurological") symptoms; you will probably not agree with some of us either; we only ask for tolerance when we express unconventional ideas.

Second, I hope that you have found a good GP or internist, that he is compassionate and enjoys being a "disease detective." I doubt that a neurologist would consider ordering the following blood tests. A GP can order the tests necessary to rule out some possibilities. Start at the beginning with your symptoms list and with a thorough physical baseline examination including blood tests for your cortisol level (elevated with stress and causing blood sugar to rise); glucose AND insulin levels (these are two DIFFERENT tests – of course, I think the "fasting blood insulin test" is the most important and one of the least expensive tests; I suspect that your level is above the optimal 3 UU/ML; insulin is known as "the fat storage hormone" – your body cannot make fat without insulin… You say, "I'm pretty overweight so I can afford to lose a lot of weight as well"which indicates again to me that your insulin level is elevated.); thyroid hormone levels (TSH, Free T4, Free T3, Total T3, Reserve T3, and antithyroid antibodies). The CRP (C-reactive protein) test and liver tests are also a good idea. Ask for a copy of all your test results for your own file. Since I suspect insulin involvement and resulting insulin resistance in skeletal muscles, this may be part of your leg and walking problems. I believe the burning sensation in my feet and legs is actually due to caustic insulin damaging the inside of my blood vessels (and not initially the nerves).

Third, in addition to George Jelinek's book, you might also read these two books: "Multiple Sclerosis: The History of a Disease" by T. Jock Murray, OC, MD, and "The Multiple Sclerosis Diet Book" by Roy Swank, MD, PhD and Barbara Dugan. You may be able to get these through your local library.

Fourth, since I believe insulin is a major player, from this day forward, I encourage you to eat a healthy diet (a good idea whether or not you have MS, especially for losing weight) – a diet that will not trigger insulin production. Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- remove all sugar (including beer, wine, etc. which have sugar), remove all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), remove all trans fats (These also increase insulin.), and white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. 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 (

All the best to you.

By the way, Dr. Denise Faustman, Director of the Immunobiology Laboratory in Boston thinks that type I diabetes can be reversed by giving the BCG vaccine (against tuberculosis) multiple times. ... t-diabetes

Here is a Bloomberg article with more details: ... or-tb.html

Have you, as a nurse, received the BCG vaccine, which uses the weakened (attenuated) bacteria… Or even frequent TB skin tests (Mantoux test) – (used in the US and the UK) uses tuberculin derivative PPD (purified protein derivative). I do think this whole family of inquiry is important to MS for its effect on the pancreas and insulin production.
Last edited by lyndacarol on Wed Dec 12, 2012 8:59 pm, edited 2 times in total.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: "Insulin – Could This Be the Key?"
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Re: Think I have MS

Postby want2bike » Wed Nov 28, 2012 7:28 am

Stop stressing about what disease you might have and get on a healthy diet. Stress will only make you sicker. Take control of your health. Diet is the answer to all our illness. Find the correct diet and you will be healthy again. ... ure=relmfu
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Re: Think I have MS

Postby lostgrl85 » Wed Nov 28, 2012 5:36 pm

Thanks for all of the info. I really was feeling like my good days are past me and that I'm only going to go downhill, but the more informed I get, the more I feel like I can control what will happen in the future. I really wish I'd have come across this information a lot earlier, but every time I looked to the internet, I never found anything positive until one day when I finally looked on Amazon and read the reviews on a few of the MS books.

I'll definitely look into those tests. I did have some labs ordered by my last neurologist earlier this year, but all she told me was everything is normal. She never stated what each one was, and the only thing I know for sure that was ruled out was lupus. I'm getting a copy of all of my records, so hopefully I'll find out soon. It would be nice if a lot more doctors would look into this type of stuff and the effects diet has on us, but I guess then the pharmaceutical companies wouldn't rule the world anymore.
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Re: Think I have MS

Postby MSGIRL » Sat Dec 01, 2012 4:21 am

Hi, I am a nurse also and have just been diagnosed with MS. I dont have any advice just wanted to say Hi and that I sympathise -nursing is a pretty physical and demanding job even when we are healthy!!. I am on sick leave at present but face having to quit my job until I get my symptoms under control. Hope all goes well with you. Good luck
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Re: Think I have MS

Postby gingerw23 » Mon Jul 08, 2013 10:14 pm

I just want to say hi also. I have been having twitching of my right thumb for years now but now it is constant. Also my left eye and left side of my nose twitches a lot. I have been having this pain and "crawling" sensation on the back side of my head near the bottom. My pincky toes go numb from time to time. I got online and looked up twitching thumb and all that basically came back was ms. Idk for sure bc I haven't been to the doc yet. Kinda scared of what he will say. I'm a nurse with two babies and a husband. I don't want to be sick. I'm going to doc on monday because a knot in ny right groin ill have him check this out also.
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Re: Think I have MS

Postby aredmosquito » Mon Jul 08, 2013 11:28 pm

If you can, ask for a Stricker CD57 panel to rule out Lyme disease as well. The usual tests they do for it, the Western Blot and ELISA, are known for false negatives. Lyme often mimics MS and leads to many a misdiagnosis.
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