How long before your MS diagnosis? How many tests??

[sagridley0630]

Good evening,

I am 33 years old and up until very recently in decent health (I am a bit overweight, but I have no allergies, have never been hospitalized other than when I gave birth to my two children, have no chronic conditions, etc). In January, I experienced numbness and tingling in my arms and hands. This was initially attributed to my job as a receptionist which requires me to use a computer and keyboard for eight hours a day. Then there were headaches, headaches like I had never experienced before. I began to lose my balance, slur words and have difficulty thinking up words I've been using all of my life. When I reported these symptoms to my primary care doctor, the first thing she asked was if anyone in my family had MS. As far as I know, none do.

Here I am in April, almost May, with no answers. A brain MRI without contrast in January came back clear. My neurologist, upon receipt of the MRI results, diagnosed me with migraines. I have been prescribed nortriptyline for that. I am unsure that migraines is the problem. I have been experiencing the following off and on (some symptoms some days, some other days):

1. Fatigue where I don't even feel like moving. On a couple of occasions I have been so exhausted I have slept for ten hours or more, and when I woke up, I was still exhausted.

2. Dizziness and light-headedness, and most commonly, a feeling as though there was a weight in my head.

3. Balance and gait issues.

4. Digestive issues, including constipation and appetite changes that cannot be attributed to anything (I have not recently began eating or drinking anything new).

5. Muscle twitches and weakness, primarily in my legs, but all over my body. Sometimes I can see my muscles twitching through my leg, and on occasions, through my pants.

6. Headaches.

7. Insomnia and accompanying irritability.

8. Stiffness and pain in muscles.

9. Difficulty achieving orgasm (much to my chagrin) and other sexual difficulty. It is just not as enjoyable as it used to be. It feels different.

10. I often feel foggy and on a couple of occasions have even forgot how to get to places while driving that I have been familiar with for years.

Those are the major issues I can think of...

I have been doing my own research because, as I mentioned, I am not convinced that a migraine diagnosis explains everything that has been happening. It is frustrating because it seems as though doctors focus on only ONE symptom as opposed to looking at everything holistically. During my last primary care doctor's appointment, I saw a different doctor than my own and she focused mainly on the muscle twitches. Blood work was ordered, and when it came back, it showed that there was no metabolic cause for any of my symptoms. Everything was normal.

I have another neuro appointment in May--they have nothing sooner--and I would like for further testing to be done to either confirm or rule out MS so I can move on with my life accordingly. As of now, everything is in limbo.

I wondered how long any of you who have MS waited before the diagnosis was made? Was there a long gap in time between the onset of your first symptoms and the diagnosis? How many tests did you have to undergo? Did any of them come back clear? I have an appt with a sleep specialist in May as well to look at if my sleep is causing any of these issues--would any of you recommend I see any other type of specialist? Have you had to quit working or take an extended amount of time off?

For those of you who are undiagnosed, how are you dealing with the frustration? And depression? Are you working while you await your diagnosis? If so, how is that going for you? I feel terribly guilty because I am not doing what I used to do in my home. A lot of responsibility has fallen on my husband, and that is not how I imagined living my life. I actually LIKE taking care of my house and my kids. I did like working, but now I am not even sure about that.

[lyndacarol]

Welcome to ThisIsMS, sagridley0630.

I highly recommend this 50-minute documentary featuring Sally M. Pacholok, RN, BSN, & her husband Jeffrey J. Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist, Yale Medical School; Ralph Green, M.D., hematologist, UC Davis; Donald Jacobsen, PhD, Cleveland Clinic (Homocysteine Research Lab):

Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"



I think you will find all your symptoms mentioned in this video; this is just one possible cause you might consider and discuss with your doctor.

[sagridley0630]

Thanks for the information. I do have a set of labs that were done recently that just came back normal, but I am not sure if vitamin B12 levels were tested or not--I am unfamiliar with the acronyms etc. that are used on my results letter.

I forgot to mention that during my last appointment the doctor banged on my legs with that knee reflex hammer and neither of them moved.

But I digress. Thank you very much for responding to me, I appreciate it so much... I want answers and need support, WHATEVER this is going on, it's throwing me for a loop!

[lyndacarol]

Thanks for the information. I do have a set of labs that were done recently that just came back normal, but I am not sure if vitamin B12 levels were tested or not--I am unfamiliar with the acronyms etc. that are used on my results letter.

I forgot to mention that during my last appointment the doctor banged on my legs with that knee reflex hammer and neither of them moved.

But I digress. Thank you very much for responding to me, I appreciate it so much... I want answers and need support, WHATEVER this is going on, it's throwing me for a loop!

sagridley0630, in the first paragraph of your initial post, you recounted having numbness and tingling in your arms and hands in January. 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

Compare your set of labs that were done recently with those above, suggested by the University of Chicago when investigating a possible cause of peripheral neuropathy. If you are unsure whether a particular test was done, I urge you to call your doctor's office and ask. Or take both lists to your May neuro appointment and discuss a game plan.

If your vitamin B12 level has been tested, I would guess that it was with the outdated, unreliable "serum B12" test. If available in your area, the newer, more accurate HoloTc test would be preferable. Your neuro could order this in May, if it is available. Do not take vitamin B supplements before testing as this will skew results. (By the way, request your own copy of any test results; you need the actual result numbers, which are more useful than "normal" or "fine" from your doctor's office. Also good to know: at US labs the standard range for the serum B12 test is considered by many experts to be set too low.)

Pertaining to symptom #9 in your initial list… In the video mentioned above (@25:38) is the on-screen statement that "B12 deficiency causes uro-genital nerve damage."

[DepressedDemigod]

Sagridley, I completely understand. I'm in much the same boat (minus the "in decent health till recently"--- while I've always been fairly physically healthy, I do have significant psychological issues).

Fatigue doesn't even BEGIN to describe it. Fatigue is what I've had since I was a teenager: an exhaustion that never goes away no matter how much or how little you sleep or how healthy you've tried to be. I only made it this long thanks to my good friends Mr. Amphetamine and Miss Caffeine. But this thing I'm experiencing now? WAY beyond fatigue. With fatigue, I could still drag myself sobbing to work, er, at least half the time. Now I can't leave the effing bed. Even after taking my adderall, I always feel just as wiped out, and I can go into a doze ANYWHERE. If I refuse to lie down, you know what happens? I collapse. That's why I haven't been able to work.

I also experience your symptoms 2 through 10. The headaches are horrific, and muscle spasms (or twitching) freak me out for some reason (*shudder*). I don't have *too* much trouble getting to orgasm if I'm alone, but my sex drive toward others and my sexual performance have gone down the toilet. I am depressed and on antidepressant, but that's been the case for years and it's never had an effect on my libido before now. I also have episodes of dissociation and ADHD, so feeling foggy is baseline for me. I can forget where I'm driving on a *good* day. But my memory's only getting worse, even as other dissociative symptoms improve. So here it is on my level... if, on a good day, I temporarily forget how to drive someplace I've been to a dozen times, then with my recent worsening of cognitive ability... I freeze up right in the middle of a conversation, standing very close to the other person, and suddenly have NO IDEA IN HELL what we are talking about. No, it isn't because there are breaks in conversation and I zone out--- I mean, literally, someone can be standing two feet from me, facing me, and in the middle of them talking to me, I suddenly forget everything. Haha, ranting a bit, sorry. I just wanted to let you know you are not alone.

And lyndacarol, thank you very much for the informative replies! I know that as of 12 weeks ago, bloodtest said I had normal vitamin levels (B vitamins included), a little low on iron though. As of 3 weeks ago, the doctors tested blood and urine samples and told me things were all normal for thyroid, liver, and kidneys; plus they did another deficiency check that showed vitamins were normal and my iron had returned to normal too. The only thing they found was a bladder infection, which I've known I get sometimes but I usually ignore them like an idiot. This time I followed medical advice and took the antibiotics. Bladder infection presumably gone, but so what? I've already got a yeast infection again for no reason and I know I'm using the bathroom more than is normal. Big whoop. I got so fed up with my symptoms (especially the fatigue), that I went to the doctor again one week ago. (On the way there, I was so exhausted I almost wrecked the car, even though I slept 8 hours the night before.) After a little convincing, the doctors took my fatigue seriously and took another blood sample. Results should come to me by Monday. However, I was too tired and groggy to ask exactly what he's testing for. I think he said something about glucose? I will be sure to ask him if they tested for vasculitis, antibodies, Lyme disease, and HIV. (I really don't think there's a chance I'd have HIV, what with having only 2 sexual partners ever, both healthy... but since I've never been tested, it can't hurt?) There's no family history for Celiac disease, and I know how it manifests since two of my friends have it and I witnessed its onset when they were in their early 20s. Can Celiac even occur if there is no family history?

[lyndacarol]

And lyndacarol, thank you very much for the informative replies! I know that as of 12 weeks ago, bloodtest said I had normal vitamin levels (B vitamins included), a little low on iron though. As of 3 weeks ago, the doctors tested blood and urine samples and told me things were all normal for thyroid, liver, and kidneys; plus they did another deficiency check that showed vitamins were normal and my iron had returned to normal too. The only thing they found was a bladder infection, which I've known I get sometimes but I usually ignore them like an idiot. This time I followed medical advice and took the antibiotics. Bladder infection presumably gone, but so what? I've already got a yeast infection again for no reason and I know I'm using the bathroom more than is normal. Big whoop. I got so fed up with my symptoms (especially the fatigue), that I went to the doctor again one week ago. (On the way there, I was so exhausted I almost wrecked the car, even though I slept 8 hours the night before.) After a little convincing, the doctors took my fatigue seriously and took another blood sample. Results should come to me by Monday. However, I was too tired and groggy to ask exactly what he's testing for. I think he said something about glucose? I will be sure to ask him if they tested for vasculitis, antibodies, Lyme disease, and HIV. (I really don't think there's a chance I'd have HIV, what with having only 2 sexual partners ever, both healthy... but since I've never been tested, it can't hurt?) There's no family history for Celiac disease, and I know how it manifests since two of my friends have it and I witnessed its onset when they were in their early 20s. Can Celiac even occur if there is no family history?

Welcome to ThisIsMS, DepressedDemagod.

Reminder: request your own copies of actual test results.

Celiac disease can manifest in an atypical form with minimal gastrointestinal symptoms.
Dr. Amy Myers, M.D., & gluten sensitivity: http://www.doctoroz.com/episode/gluten- ... t-epidemic

@4:00 Dr. Amy Myers, M.D., speaks on the newly-recognized warning signs of gluten sensitivity: headaches, migraines, inflammation causing brain fog, depression from nutrient deficiencies (zinc, iron, B vitamins, omega-3 fatty acids, vitamin D), joint pain & arthritis, and skin rashes.
@4:30 she says more than 18 million have been diagnosed with gluten sensitivity; suspects that 1 in 2 probably has gluten sensitivity
@5:00 mention of study in New England Journal of Medicine several years ago that linked gluten sensitivity to 55 diseases

Recent study showed that 56% of people with migraines had gluten sensitivity; gluten-free diet resolved the migraine problem.

2/18/14 Dr. Amy Myers, M.D., & 5 signs of gluten sensitivity (weight gain; irregular bowels; joint pain; skin rash, a.k.a. chicken skin or keratosis pilaris; other food sensitivities – dairy, corn, soy): http://www.doctoroz.com/episode/5-hidde ... y#comments

In part 2 of his 7-part presentation on celiac disease, Gary Kaplan, D.O., describes the 4 forms of the disease:
1. Typical; 2. Atypical or Extra-intestinal; 3. Silent; 4. Latent


@ 0:30 he says that the Atypical/extra-intestinal form includes minimal gastrointestinal symptoms AND may include:
iron deficiency/anemia
dermatitis herpetiformis
chronic fatigue
joint pain
infertility
neurologic symptoms (ataxia, neuropathies)
vitamin deficiencies
ADD
osteoporosis/osteopenia
autoimmune disorders – list available at http://www.aarda.org
migraines

Yes, a person CAN have celiac disease/gluten sensitivity even when there is no family history of celiac disease.

[MrChris]

Here is the testing i went through.

Ct scan
Ct scan with contrast
Blood testing (not exactly sure for what) but is do know that they ran an ELISA and Western Blot
Multiple MRIs with and with out contrast.
Lumbar puncture
Visual evoke potential
And clinical symptoms

It was right after my first mri that the neurologist pointed out that they had found lesions in my brain that they were consistent of those who have MS. From there more testing was ordered. And 5 months later I had an official diagnosis.


http://en.m.wikipedia.org/wiki/McDonald_criteria

[sagridley0630]

Depressed Demigod,

Best of luck to you. A bit of time has passed since I made my first post here and I've noticed that some days some symptoms are better than others, other days some symptoms are worse than others. It is frustrating. Months ago, a cup of coffee would increase my alertness and help me get going in the morning. Now a cup of coffee does absolutely NOTHING for me. I do not drive much because when I do, I forget my route going to even places I am used to going. I am still frustrated and wonder if I am being put through the wringer. I hope you find some answers. I kind of feel like people think I am making this up.