MS or not MS? That is the question.

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

MS or not MS? That is the question.

Postby ChristieS » Fri Mar 29, 2013 2:37 pm

Hi everyone, my name is Christie and I have a lot on my mind. I'm not ready to talk about this to anyone except my direct family at this point so I thought I would come here and make some friends.

I have an MRI set up for Monday and of course, am nervous about what may be found. It's Friday now so when you are scared and waiting that seems like forever. At least I will have Easter to distract me.

I'd like to share my story in hopes of finding those who can relate and to help me pass the time through this process of being diagnosed or not depending on what the future has in store for me.

My Background: I have never been a very healthy person. I have been sick my whole life due to a deficiency of immunoglobulin G. Any upper respiratory germ that comes my way I will catch. Not only catch but I am unable to fight it on my own. A simple cold turns into bronchitis almost every time and eventually would lead to pneumonia or death if I didn’t get antibiotics and/or steroids to help me along my way. Even with those it takes at least a month to recover from a cold and during the winter months that seems to be just in time to catch another one. I do get a break and am much healthier from about May or June through November. I mention this because I know MS is autoimmune but I wonder what having it might mean for someone like me with a weakened immune system?

In addition to IGG deficiency I have been diagnosed with a pituitary tumor which I am also getting rechecked on Monday as well as some stenosis in my cervical spine. They are thinking my spinal compression may be worse and causing my symptoms but are checking for MS as well as spinal chord compression. They already checked blood work for B12 deficiency and dehydration among other things and all that came back good.

My Symptoms: As you all know with MS it’s hard to tell what is an MS symptom or just something normal acting up. Well I have no idea if I even have MS but am putting together my symptoms like puzzle pieces and they seem to be creating an ugly picture.

The earliest thing I can trace back started about a year and a half ago. I started getting dry patches on my upper arms. Now I have them all down both arms, on my neck and chest kind of like eczema. I have also been loosing weight for the last year and a half. I’m down 35 lbs and am averaging about 3lbs a month that I am losing without really trying. Sometime last year I got an infection and was given Avalox (an antibiotic) I had to stop taking that because I was having numbness and tingling which was listed as a bad side effect. The numbness and tingling has never gone away in my ulnar nerve and causes problems with my pinky and ring finger feeling cold, numb and tingly.

About two months ago I went to urgent care after an episode of not being able to see. My eyes and my brain just didn’t seem to be coordinating. I would look at something and try to focus but couldn’t until eventually it got so bad I could barely see at all. By the time I got to the urgent care my symptoms seemed better and I passed an eye exam and was sent home with a referral to an Opthimalagist. I followed up with that appointment and he didn’t see anything wrong and said he thought it was just an eye migraine.

About two weeks after that I had to take my mother in for some oral surgery and had chest pains and a panic attack which landed me in the hospital. Again, nothing came of the tests and everything looked fine. The doctor told me she didn’t think it was anything except anxiety.

Shortly after that I got another cold that turned into an infection and was prescribed ceftin. I have taken it before but started experiencing tingling in my left leg. I called the doctor to see if it was a side effect and they said it was and I should stop taking it. That was about three weeks ago and the tingling never went away. It continued in my left leg and then went to my right as well after a couple days. It happens every time I rest my legs and especially when I lay down at night. It is like a feeling of vibration similar to when you use a leaf blower or trimmer and when it stops you still feel the vibration. It is only from my calves down and into my feet to my toes. It is every night and feels very annoying but at least it isn’t painful.

I just had to take my mom in for another oral surgery this Tuesday and again, I started freaking out. I don’t know what it is about that place or if it’s the stress but I started feeling off, a bit disconnected from my surroundings and dazed. I took half of an ativan pill thinking it was anxiety again. The longer I sat in the waiting room to take her home the worse it got. I felt like I was on auto pilot navigating what I know versus what I’m actually seeing. I was getting very nervous and of course, when you don’t feel well everything takes longer than it should. A 1 hr. surgery turned into 2 and a 10 minute recovery turned into 30. Finally I got her in the car and we were able to leave but had to stop at her pharmacy on the way home to get her meds. I almost didn’t make it. Driving was ridiculously hard. I just know that if someone did something stupid I wouldn’t have been able to react in time to avoid it. Not to mention I could have easily been the one making a stupid move. I had my daughter in the car and my mother strait out of anesthesia to worry about so I took a nice long break at the pharmacy before venturing the rest of the way to her house. The rest of the day seemed to improve slowly especially since I slept for an hour that afternoon. I broke down and told my mother that day about all the weird things that have been happening to me.

Since then I have repeated episodes of the same disconnected feeling I had that day but they are short, maybe 5 minutes each time a few times a day. I also have constant bouts of light headedness when I stand up from the couch. I’ll take a few steps, start getting light headed and be on autopilot for the next few steps. Then I will come to again and brace myself at it passes and realize I could have just collapsed and hit my head. I thank my lucky stars and move on. That happens about 10 times a day. Today, during one of my disconnected/ disoriented spells my left arm started to tingle and felt heavy. Again I was wondering if it’s in my head because of all the MS research I have been doing. I called my mom just so I wasn’t alone as it was happening. The whole episode came and went in about 10 minutes from disoriented to arm tingling to done. Other things are that my spine hurts in the middle of my back in one specific spot, my neck hurts which isn’t unusual for me since I have a compressed nerve there, and I am getting headaches every evening. BTW, what do MS headaches feel like?

So, I think that pretty much sums up EVERYTHING and if you are still reading I thank you! If anyone can relate or has any advice to give please feel free to write back. I am particularly interested in knowing the likely hood of these little weird things turning into something bigger like a full blown loss of function in a part of my body. I feel like I’m waiting for the other shoe to drop and get hit with something really bad at any moment. Did any of you experience short episodes like I do? Is that a precursor to something bigger, just normal MS behavior, or not MS like at all that I could be dealing with something totally different than MS?

Like I said, I have two days until my MRI and then who knows how many days until I know any results. I will be asking for a disc so I can come home and investigate my brain and spine on my own ;p
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Re: MS or not MS? That is the question.

Postby Cholderby » Fri Mar 29, 2013 2:59 pm

Hi, Christie! I'm new too.

A friend of mine, who's mom died of breast cancer, found a lump and was so nervous waiting for the biopsy results she wanted to write a book with suggested distractions!

I was diagnosed a couple of weeks ago. Well, I was diagnosed with "clinically isolated syndrome" since you need two flare ups on record to officially have ms. I had the light headed thing too, plus double vision and facial numbness.

I was actually relieved when they told me it was ms. For the symptoms I had, it looked like that or an inoperable brain tumor which makes ms look pretty great by comparison.

Ive always preferred the known to the unknown. Hopefully you get some answers on Monday.
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Re: MS or not MS? That is the question.

Postby ChristieS » Fri Mar 29, 2013 4:24 pm

Oh well good luck with your journey. I too plan for the worst and hope for the best. I like to know as much as I can. I'm not even sure if I fit the bill since I've only done some research since my doctor mentioned it as a possibility on Tuesday.
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Re: MS or not MS? That is the question.

Postby jimmylegs » Fri Mar 29, 2013 5:41 pm

Welcome, c!

I can't answer fUlly right now just throwing in this link as a reminder For when I can get back on here properly!

Http://archderm.jamanetwork.com/article ... eid=548919
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Re: MS or not MS? That is the question.

Postby lyndacarol » Fri Mar 29, 2013 6:09 pm

Welcome to ThisIsMS, Christie.

We are glad you found us. TAKE A DEEP BREATH. You may not have MS at all, but there is always the possibility; it is a differential diagnosis – made by ruling out other possibilities. Very often, it is not easy or quick to diagnose. Before modern, expensive tests were available, 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. IF you do have MS, you have found many supportive friends at this site. You WILL be able to deal with this – the uncertainty is difficult. 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 (and resulting insulin resistance) 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.

I hope that your doctor is a good GP or internist, that he is compassionate and enjoys being a "disease detective." I tend to believe that if you see a surgeon about a problem, 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." You say that blood work for B12 deficiency, dehydration, and other things showed good results. I hope it included these: (1) cortisol level, which can be elevated with stress (which is certainly the situation at your mother's oral surgery), it causes blood sugar to rise; (2) glucose AND (3) insulin levels (these are two DIFFERENT tests – I think the "fasting blood insulin test" is the most important and it is a relatively inexpensive test (the optimal 3 UU/ML or lower); (4) thyroid hormone levels (TSH, Free T4, Free T3, Total T3, Reserve T3, and antithyroid antibodies). (5) The CRP (C-reactive protein) test (testing for inflammation) and (6) liver tests are also a good idea. Ask for a copy of all your test results for your own file. I suspect excess insulin is involved in MS symptoms and maybe yours, too. Your unexplained weight loss of 35 pounds "without really trying" sounds like the typical symptom for type II diabetes – have you seen an endocrinologist about this possibility? By the way, in type II diabetes the body produces excess insulin which leads to insulin resistance (which would account for your weight loss).

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.

I believe insulin is a major player; I encourage you to eat a very healthy diet (a good idea whether or not one has MS) –I think the diet should not trigger insulin production. Many people find that diet can influence the symptoms of MS. In my opinion, this means a very low-carb diet --remove ALL trans fats; 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.), and remove white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible).

My suspicion is that Fatty Liver Disease is also involved in MS (one can be "skinny fat"), 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 in MS interesting (http://www.TerryWahls.com).

To your last point… there is no one MS profile – we all have a different collection of symptoms, sometimes we share some of these but not always. All the best to you.
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: MS or not MS? That is the question.

Postby bartman » Tue Apr 09, 2013 6:03 pm

You likely don't have MS. As you say you are constantly getting infctions you probably have chronic lyme disease which is really lyme with multiple co-infections such as bartonella, babesia, mycoplasma, chlamydia pn and others. You should educate yourself about this huge medical controversy...and also check out the wheldon protocol for ms on this site and on CPn Help.org. MS is very often misdiagnosed. More and more people are starting to recognize that these chronic infections that mimic MS can be treated but often take combination and long term antibiotics and it takes a long time to get better. look into this and it may lead you to better health.
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Re: MS or not MS? That is the question.

Postby floxed » Sat Jun 15, 2013 8:09 am

Avelox? This sounds like quinolone toxicity syndrome...
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