Desperately need some input. Never knew was MS was... (long)

[RevKG55]

I am a 25 year old female, and here is a comprehensive history of my symptoms.

The earliest instance of what may be a relevant symptom, due to its idiopathic and unexplained nature, occurred in latter part of 2008 when I was 18. I remember gradually over the course of a few weeks, I lost my ability to take a full breath or yawn. It felt as though my lungs were simply not strong enough to expand to the air I was attempting to inhale. In conversation I would have to take frequent gasps to avoid becoming too short of breath—with no other reasonable explanation, I assumed it was some sort of anxiety. The breathing issue was couple with temporary bouts of extreme fatigue and depression. The problem resolved itself spontaneously after a couple months.

The first significant occurrence of multiple unexplained symptoms presented in the fall of 2010. I noticed that my hands began tingle at the fingertips, and then a burning/tingling sensation would mask my palm. Similarly sensations of swelling also arose in my feet, calves, forearms, and the top and right sides of my face. Accompanied with these symptoms was intense fatigue and debilitating weakness, to the point that I was hardly able to perform even basic job duties without nearly collapsing (I specifically remember mopping or just picking up a broom to be almost impossible).

My arms were rendered basically useless, despite having been an athlete with extremely well-developed strength, and trying to brush my hair was overwhelming. I simply could not lift my arms for more than a few seconds before they would need to collapse back down to my sides. In one instance, my limbs were so weak I had to physically crawl and drag myself up the stairs to my room, where I lay in bedroom doorway for about half an hour.

Throughout the entire duration of this “episode,” I also developed an intense and unbearable sensitivity to sound. I could no longer type on my computer because the keys were like shattering glass. Music turned to the lowest volume possible before mute was somehow too loud for me to handle. I couldn’t so much as stay in a room with a ticking clock. I recall feeling hopelessly depressed, incapacitated, and almost entirely broken. Eventually, for no conceivable reason whatsoever, all symptoms stopped.

It was not until the summer of 2012 that something similar occurred. The weakness in my limbs returned, as well as crippling fatigue and depression. I remember taking a shower and becoming overwhelmed and exhausted by simply trying to wash my hair.

In addition, I recall having sat down at my computer to look something up, and suddenly realizing that I could no longer read the words. My eyes abruptly lost their ability to focus no matter how hard I tried, and I as continued to type (trying to ignore my eyesight deficiency), several of my fingers on my right hand (pinky and ring) involuntary became stuck, or locked somehow. The ring finger positioned itself over the pinky finger, and I was unable to use them. I not recall for certain how long they remained in that position, but I know it was at least several hours. Additionally, I remember a great deal of tingling in both my hands and arms, as well as pain in my fingertips. I went to the emergency room for the blurred vision, but they said it was just anxiety (which I denied).

Over the next year, there would be several sporadic instances (every 3 or 4 months or so) where the burning sensations would return… at one point, I felt such an intense heat from the inside of my chest that I became too dizzy to stand. Throughout this episode and the others around this time, I found myself losing the ability to think properly, or perform even basic routine tasks. I would forget what I was saying halfway through a sentence, and be unable to comprehend or recall what was being said to me by others.

The tension in my upper back and neck (that has been omnipresent since 2011) becomes immeasurably worse and almost completely incapacitating when these other symptoms are there. I would occasionally tilt my head to the left or right to try and relieve the intense feeling of pressure, and I would experience sharp electrical shock type feelings shoot down my legs and/or arms.

In February of this year, along with the stiffened fingers, burning sensations in my arms, legs, and face, freezing cold hands and feet, and blurred vision, I had a muscle spasm in my neck that was so intense it made my left eye bleed for two days. Additionally, I was no longer able to breathe properly. Symptoms subsided completely after about a week.

Over the past 6 months I have begun to notice significant developments in the presentation of what I thought was just bizarre random phenomena. Most notably is my cognitive function… it has declined rapidly and profoundly, to the point that my professional life is beginning to become a concern. I find some of my thinking abilities have been gradually impaired since 2011 specifically, however now I am experience extreme difficulties with my memory in particular, as well as my ability to complete (or sometimes even begin) a simple routine task that I’ve done dozens if not hundreds of times in the past year.

I find that I am almost completely unable to recall anything anyone says to me throughout the day, and any verbal instruction I am given just simply does not make sense. As if I can’t put the words together… at all. I am finding myself less and less able to perform at my job, mostly due to my cognitive issues, but also due to some physical complaints as well. Most days I am so tired I can hardly function. My fingers tire from typing even a few sentences, and some days I am unable to rise from a sitting or especially crouched position without significant effort and energy.

This past week has been perhaps the worst since 2010. I am unable to form thoughts or sentences, my speech sounds unarticulated, certain words blend together and I can’t seem to separate them. Over the past several years my handwriting has become almost indecipherable… I have a great deal of difficulty directing my hand to form certain letters. I’ll forget how to spell words as I’m in the middle of writing them (which is unheard of, I have a vocabulary of over 50,000 words and I can spell them all). With that being said, I’ve never NOT been able to think of a word. Now I get so flustered that I give up.

It’s a huge problem that I’m not able to perform well at my job—I am the assistant general manager, and I have a great deal of responsibility. My boss has noticed extreme changes and decline in my job performance, and she said she’s noticed it becoming worse over the summer.

I’m constantly uncomfortable, stiff, and while in the past it was only a mild inconvenience, now I am completely unable to tolerate even minimal warmth. In my suit at work the other day, I was flushed and my face felt as though it was burning. I felt suffocated in my jacket. My hands, arms, legs and feet had all gotten the burning sensation as well. I took a shower at home and nearly fainted.

I do not know much about Multiple Sclerosis, but I know that I have just ignored these random episodes for several years now… however, now that my boss is noticing and has become extremely concerned, I felt compelled to act. I went to the ER the other night and they found nothing, again. Later that night I was doing genealogy research (as I always do), and I saw that I could download my raw DNA… naturally curious, I did. Then I stumbled across Promethease and got even more curious. The first things that showed up were all of the indicators making me 6x more likely to develop Multiple Sclerosis. I had 89 markers. Is that was this could be?

[ElliotB]

Perhaps it is now time to see a neurologist, one that specializes in MS.

Why have you chosen not to see a doctor?

[lyndacarol]

Welcome to ThisIsMS, RevKG55. To answer your question… Yes, your symptoms could be part of MS. Your symptoms are also common to many other conditions; MS is a diagnosis of exclusion, made when other more likely conditions have been ruled out.

Since the subject line requests "some input," I offer you mine. In my opinion, the first possibility to be screened for is a vitamin B12 deficiency, since this is one of the common conditions with which your symptoms are consistent – any person at any age can develop a B12 deficiency. Do not take a vitamin B supplement before testing, as this will skew test results. A serum B12 test alone is not adequate to identify a deficiency. Thorough initial testing should also include a serum folate test, a serum homocysteine test, and a serum (or urinary) methylmalonic acid test. Your GP, or any physician, is able to order these tests for you.

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/
and I find many of your symptoms in their YouTube video lists:

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment
Visual Disturbances
Migraine
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders
Psychosis
Thoughts of Suicide

Cardinal Signs of Anemia Due to Vitamin B12 Deficiency:
Fatigue
Shortness of breath
Dizziness
Pale/yellowish skin
Swollen tongue that may appear dark red
Weight loss
Diarrhea
Numbness or tingling in your hands and legs
Muscle weakness
Irritability
Unsteady movements
Mental confusion or forgetfulness

[RevKG55]

Thank you all for the input. I do intend to see a doctor soon, the reason I hadn't is because I don't gave insurance and I have enough medical debt already. In addition, the few times I have seen a doctor they just told me everything looked fine so I believed them.

Now my problem is I'm at work and I can hardly use my left hand. The fingers are all curled up and tingling like mad.

[lyndacarol]

I hope you can start with a PCP (GP, internist, family doctor – these are usually less expensive than a specialist), who is compassionate and wants to be a "disease detective." He can order the groundwork testing to begin your investigation.

Numbness/tingling in the legs and arms is the textbook definition of "peripheral neuropathy." This is a common symptom in many conditions. In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:

http://peripheralneuropathycenter.uchic ... #bloodtest\

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

Please note that the first blood test the U of Chicago suggests is for vitamin B12. (By the way, please request copies of any test results. It is good to have the actual numbers. And our memories often fail us.)

There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage.

If you are found to have a B12 deficiency, it is easily and inexpensively treated; if caught early, symptoms are usually reversible.

[euphoniaa]

Hello, RevKG55, and welcome! You may have noticed that I edited your post a bit and spaced out the paragraphs. Many of us have vision problems (mine are from cataracts, not MS) and we can't read large blocks of type. I did NOT change a single word, however.

I scanned through your symptom list, and many items seem neurological in nature. But...the problem is that most all neurological conditions have very similar symptoms. Like the others said, you will need a doctor to help guide you through further examination & testing.

And...when it comes to MS, every single one of us seems to have a completely unique manifestation of symptoms and MS experiences -- impossible to really compare ourselves very well. Plus, we're usually plagued by multiple medical maladies that confuse things even more.

It's really good that you put all your experiences down -- that will help you to remember. However, my suggestion is not to get too wrapped up in the extensive details when reporting to your doctors (keep it handy to refer to, but don't recite it all...). They will need enough general clues of neurological problems to lead their investigation, but in my experience, they just don't have time to address every single complaint.

A neurologist may be a good choice, but I was diagnosed by a physiatrist (a rehab doc -- neuro/skeletal/muscular expert) without mentioning any symptoms at all except a slight finger tremor. My simple, initial exam gave him enough clues (without overloading him with info ) to send me for brain/c-spine MRIs and the next day I had a definite diagnosis of both MS and HNPP (a hereditary peripheral neuropathy). All other tests confirmed MS as well.

In fact, MS & HNPP symptoms are so similar my docs say it's difficult to tell which symptom goes with which neurological deficit (Central Nervous System vs. Peripheral Nervous Symptom). Plus, both my neuro and my physiatrist agree that my degenerating spine could also be the culprit.

But, they also say that I have one of the most definite cases of MS they've seen. Sigh.

Good luck to you and feel free to ask more questions!

[jimmylegs]

hi and welcome rev

i can relate personally to your first symptom on the list. i used to have a lot of trouble getting a decent breath. this link will lead you to a list of forum results where you will see several past relevant posts at a glance: http://www.thisisms.com/forum/search.ph ... mit=Search

your mention of having been an athlete leads me to recommend checking out another relevant forum search:
http://www.thisisms.com/forum/search.ph ... mit=Search

one thing to consider when it comes to fatigue, is the very very common issue of iron depletion "Nearly one fifth of recreational athletes have anemia and a third have iron deficit, these conditions can decrease their physical performance." (Di Santolo et al, 2008) http://link.springer.com/article/10.100 ... 007-0647-9

are you able to share any details about your food and fluid habits, meds, supplements, current exercise regimen? all of these factors can influence how genes are expressed. if you have not already checked out the last decade or so of research on nutrigenomics, you might find some of these abstracts interesting: scholar.google.ca/scholar?q=nutrigenomics&btnG=&hl=en&as_sdt=0%2C5&as_vis=1

i'll look forward to hearing any day to day lifestyle info you might want to share. i can assure you that the scientific literature has documented a number of nutritional problems associated with ms, one of which is certainly b12 deficiency (which i have had too, and yes it sucks) and at a bare minimum, you should be able to make some adjustments to food habits that could start you on a better path going forward. testing and supplementing are more complicated, but there are benefits associated with each as well and so they are things you might want to consider looking at, if access is not a problem.

again, welcome to the forum