I am fairly certain I have MS...but...

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

I am fairly certain I have MS...but...

Postby imsureihavems » Sat Jul 28, 2012 10:00 pm

Hello,
I am so sure that I have MS, but I cannot seem to get a definitive response from a doctor. I am so frustrated.
Initially, I thought all of my symptoms started with a UTI, but after all the reading and research, it appears that I had symptoms about 6 months prior that only lasted a few weeks.
The earlier symptoms were numb hands and tingling arms. I thought it was a neck issue and went to the doctor. I did have bulging discs, but the follow-up visit to a neurosurgeon determined my bulges were not related to the locations of numbness. I was confused, but the not alarmed. I thought just days after that I had a bad reaction to the anti-inflammatory meds the doctor prescribed, it seems it may have been MS. I had dizziness when turning my head, a metal taste in my mouth, I was drooling, and my eyes were rapidly shifting. I was also very swollen in my legs and feet.

That passed in a few days and I was fine until Feb. I had a UTI, and I got so sick that I thought I was dying. I had pain above my kidney, at the bottom of my ribs, irregular breathing and excessive yawning, swollen feet, fatigue that is out of this world--I slept more than 17 hours daily for over a week. My heart rate was then, and frequently now, higher than 110 bpm.

Now, I have a major intolerance to heat, I get sick and tired when I eat or drink coffee, I am constantly grinding my teeth together without being aware until my jaw hurts, I have an acute onset of restless legs, my ears ring daily, and the muscles in my arms and back knot up like golf balls and hurt so badly. My husband has to rub and stretch the knots for 15 to 20 minutes to work them out, only to have more surface in a few hours. I have the excessive yawning and irregular breathing daily. My lips feel fat and my tongue, upper gums, and the insides of my lips burn all day with only a few moments here and here there where it subsides. I have a new onset of blurred vision. Fatigue and headaches are now normal every day.

My vitamin D was very low... 13. I don't understand the nutritional panel, but it was very bad according to my primary. He referred me to the MS clinic. My brain MRI shows a reported "hypersensitivity in the white matter." The doctor at the MS clinic said he doesn't "think" I have MS but would not say why. He only spent about 5 minutes with me.

I have an appointment on the 31st with another MS specialist. I am so afraid I will not be taken care of. I did go ahead and make an appointment seeking a "diagnosis" at the Mayo Clinic in another state, but only because it takes so long to get in and I want to be prepared for another round of blanks. That will not be until the end of October.

I understand that I may not have MS, but I am not sure why I cannot find a doctor willing to identify what I do have if it is not MS.

Any pointers?
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Re: I am fairly certain I have MS...but...

Postby Froggie » Sun Jul 29, 2012 5:43 am

imsureihavems wrote:I am so sure that I have MS, but I cannot seem to get a definitive response from a doctor. I am so frustrated.


Hi imsureihavems- I'm sorry to hear of your frustration. Unfortunately, MS can be difficult to pick up on, especially with the relapsing/remitting variety. Symptoms come and go away after a few months and unless one is looking for it, MS often doesn't come into the picture. I had Optic Neuritis about ten years ago and every test came back clean- MRI, lumbar puncture and more blood work than I care to recall. Looking back, I know I've had MS symptoms, but no one picked up on them.

For your doctor's visit, I do have some advice. Have a list of questions to ask. I tend to forget things and it's helpful to stay on track. Also, have your husband or someone else with you to act as your advocate. They may see something that you don't and can bring it up or buttress your points. Hang in there! We've all been in your shoes.
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Re: I am fairly certain I have MS...but...

Postby want2bike » Sun Jul 29, 2012 7:53 am

You could have mercury poisoning. The metal taste in your mouth and the problems you are having with your mouth indicate mercury poisoning. Do you have amalgam fillings, root canals or bridges made in China? I would check it out with a mercury free dentist. He can check the mercury level being given off by your fillings.

http://www.dentalwellness4u.com/freeser ... tists.html

http://www.mercurypoisoned.com/symptoms.html

http://www.youtube.com/watch?v=B0WWXzJu ... re=related

http://today.uchc.edu/headlines/2008/ap ... _work.html
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Re: I am fairly certain I have MS...but...

Postby lyndacarol » Sun Jul 29, 2012 8:31 am

Welcome to our community. Since you asked for any "pointers," I offer my standard action plan recommendation:

First, take a deep breath. You may not have MS at all; it is a differential diagnosis – made by ruling out other possibilities. 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, work with your GP or internist with whom you are most comfortable, who is compassionate and who enjoys being a "disease detective." He can order the tests necessary to rule out some problems. Begin with a thorough baseline examination including blood tests for your cortisol level, glucose AND insulin levels (these are two DIFFERENT tests), thyroid hormone levels (TSH, Free T4, Free T3, Reserve T3, and antithyroid antibodies), even a liver profile, CRP (C-reactive protein) test, (and others that our member jimmylegs will recommend), etc. Ask for a copy of all your test results for your own file (The vitamin D3 test results are good to have there already.).

Third, 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, 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), all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), 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. Personally, I think that excess insulin plays a great part in MS. I think that Fatty Liver Disease is also involved. Diet is important. You may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com).

By the way, the Mayo Clinic is a wonderful place. I went to Rochester, Minnesota, for a second opinion after my local GP had diagnosed Thoracic Outlet Syndrome and had scheduled a surgeon to remove my first rib. At our first meeting my Mayo Clinic doctor told me that he didn't know what it was, but it WASN'T Thoracic Outlet Syndrome! I was optimistic; but mistakes are made even at the Mayo Clinic. They missed on my MS diagnosis, thought the problem was a herniated disc – I unnecessarily had a cervical laminectomy; but MS is often VERY difficult to identify.
All the best to you.
Last edited by lyndacarol on Sun Jul 29, 2012 11:10 am, edited 1 time 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: I am fairly certain I have MS...but...

Postby jimmylegs » Sun Jul 29, 2012 10:59 am

welcome to TiMS, sure. sorry to hear how badly you've been feeling. what exactly was done for the nutrition panel, if i may ask? the good news is, if you are interested in following through from a nutritional perspective, a lot of your symptoms look like they consistently point to only a few nutrients which interestingly are also linked to vit D status. if you want to chat more, just say the word!
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Re: I am fairly certain I have MS...but...

Postby imsureihavems » Sun Jul 29, 2012 5:05 pm

I would love to chat more with anyone who may have helpful interjections. I appreciate all the comments above. I am not sure what you mean by "what exactly was done for the nutrition panel," I was placed on a strict diet that I find nearly impossible to follow. The panel was about as thorough as one might be. My doctor sent my blood to a research facility which responded with multiple pages of disturbing results. All the results in "red" were "dangerous," those in "yellow' were cautions of deteriorating values, and those in "green" were good results. There were about 5 pages of red and about 10 lines on one page of yellow, and only 3 values that were in green. My primary said that it all pointed to severe systemic inflammation that he found highly bizarre. I made a spread sheet with all of my symptoms and asked him to research diseases associated with those as well as the signs he had discovered. He believes I have MS, but he has never diagnosed it before and wants someone with in a higher pay grade to make that decision. There were a few things I did not mention in my initial post. Those pertain to cognition and memory. I have been a "professional student" for more than 12 years at a major university. Last semester, I made my first F. It was in a class that I was repeating as a refresher. I had previously made an A in that very class. I do not pay bills, that is one of my husband's roles, but I have made a few purchases recently that I have absolutely no recollection of. I argued with PayPal regarding one of those. It is painfully obvious that it was me who made the purchase. I had to drop all of my classes, I cannot get my house organized, and I cannot get my website managed as I once did. I certainly hope the Mayo Clinic can get to the bottom of this, if the doctor I am seeing Tuesday can't. By the way, I also had an initial diagnosis of Thoracic Outlet Syndrome, and it too was shot down by my primary. I have never heard of a "mercury free dentist."
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Re: I am fairly certain I have MS...but...

Postby jimmylegs » Sun Jul 29, 2012 6:32 pm

ahhh, the red yellow and green print out. what i actually meant was, was the nutrition panel a set of serum results for the various nutrients that are known to be low in ms patients? what you describe (please do correct me if i'm wrong) sounds like they were testing igg antibodies to a panel of foods. basically showing results for inflammatory responses to different foods right? vs serum levels of nutrients?

my mother sent away for that kind of test in the past, so i've seen similar colour-coded printouts before. and, my stepdaughter had a similar sort of 'allergy' testing done too. once we addressed her nutritional problems she went back for retesting and all her markers for inflammatory responses were gone, aka 'green'.

i think given the pro student status that it might be prudent to review the kinds of food you typically eat, their associated inflammation factors and nutrient levels, to assess if your diet is pro- or anti- inflammatory overall.

there might be some pretty glaring answers available, with a little research :)
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Re: I am fairly certain I have MS...but...

Postby want2bike » Mon Jul 30, 2012 5:00 am

If your problem is mercury your doctor will not be able to determine it. A mercury free dentist has instruments which will test the amount of mercury being released in your mouth. If you have a metalic taste in your mouth that is and indication of the presents of mercury. You have something in your mouth which is giving you this taste. You also seem to be having problems in the mouth area. You should at least discuss this with your physician and ask why you have a metalic taste in your mouth? The only way you can have MS or any of these neurological disease is if you have the genetics which lead to the disease. If you do not have the genetics which lead to MS you will still get just as sick if you have too much mercury in your body. You need to find the cause of this illness and not worry about the name they put on it. Until you remove the cause you will stay sick.

http://www.youtube.com/watch?v=ZAhu6oa_ ... ure=relmfu

http://www.youtube.com/watch?v=KOhcUvHO ... ure=relmfu
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