This Is MS Multiple Sclerosis Knowledge & Support Community

Posted: **Mon Apr 20, 2015 11:11 am**

Okay so I am not diagnosed, nor do I really know if I am anywhere near a diagnosis or if I am (or my doc) on the right track here. But my symptoms are:
Fatigue - crazy fatigue
Limb weakness - most intense was in both feet, they were slapping the ground as I walked. Was in both feet but worse in left foot.
Pins and needles - arms and feet
Oh I am 29.

I saw my doc last week who is sending me for blood work, and has sent the referral for an MRI. She has requested I go back if I have any more bouts of weakness, or if I have any vision problems.
So starting on Thursday night my eyes started to hurt. Friday afternoon/evening they hurt so bad I could hardly open them. I do get diagnosed migraines, but this was different. I had no actual vision problems, my eyes just hurt. Mostly my left, my right was just a bit. They hurt more when I moved them, so looking around, mostly up. The eye pain lasted about 2 days, and I have had a dull headache ever since.
Then on Friday night my right hand got very weak. I was trying to cut my sons nails with nail clippers and I could not hold the clippers properly, or squeeze them. I ignored it and went to bed. Saturday I spent the morning studying, still have slight weakness in my right hand, then Saturday night it got worse again. I was helping my brother and sister n law make pizzas and my hand was shaking and just not working. It was like I couldn't even feel it.

Anyways, I am not asking for opinion on the likely hood of MS or if you think I have it. What I am asking is, when you get a relapse, are your symptoms bad 100% of the time during that relapse, or do they symptoms sometimes come and go? The only symptom that hasn't disappeared since this all started is my fatigue. But the limb weakness, it's not always super apparent. And it is often worse at night. Is that common with MS? Symptoms being worse at night?

Thanks for reading!

Posted: **Mon Apr 20, 2015 3:47 pm**

admackenzie wrote:Okay so I am not diagnosed, nor do I really know if I am anywhere near a diagnosis or if I am (or my doc) on the right track here. But my symptoms are:
Fatigue - crazy fatigue
Limb weakness - most intense was in both feet, they were slapping the ground as I walked. Was in both feet but worse in left foot.
Pins and needles - arms and feet
Oh I am 29.

I saw my doc last week who is sending me for blood work, and has sent the referral for an MRI. She has requested I go back if I have any more bouts of weakness, or if I have any vision problems.
So starting on Thursday night my eyes started to hurt. Friday afternoon/evening they hurt so bad I could hardly open them. I do get diagnosed migraines, but this was different. I had no actual vision problems, my eyes just hurt. Mostly my left, my right was just a bit. They hurt more when I moved them, so looking around, mostly up. The eye pain lasted about 2 days, and I have had a dull headache ever since.
Then on Friday night my right hand got very weak. I was trying to cut my sons nails with nail clippers and I could not hold the clippers properly, or squeeze them. I ignored it and went to bed. Saturday I spent the morning studying, still have slight weakness in my right hand, then Saturday night it got worse again. I was helping my brother and sister n law make pizzas and my hand was shaking and just not working. It was like I couldn't even feel it.

Anyways, I am not asking for opinion on the likely hood of MS or if you think I have it. What I am asking is, when you get a relapse, are your symptoms bad 100% of the time during that relapse, or do they symptoms sometimes come and go? The only symptom that hasn't disappeared since this all started is my fatigue. But the limb weakness, it's not always super apparent. And it is often worse at night. Is that common with MS? Symptoms being worse at night?

Welcome to ThisIsMS, admackenzie.

Every person's case of MS has a unique set of symptoms and unique experiences with those symptoms. For some people symptoms come and go; for other people symptoms come and stay.

The symptoms you describe (extreme fatigue, weakness, peripheral neuropathy, migraines, pain/eye pain) are common to many different conditions. There is no definitive test to rule MS in or out. MS is a likely cause of symptoms only after other more likely possibilities have been ruled out.

The "Pins and needles – arms and feet" is called peripheral neuropathy. You said your doctor had sent you for blood work. Compare the tests she ordered with the testing suggested by the University of Chicago, when investigating the cause of peripheral neuropathy:

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

I am curious when you say that on Friday you were trying to cut [your] sons nails with nail clippers – do you have a very young son? A woman's store of vitamin B12 is greatly drained by pregnancy and breast-feeding. Also, oral contraceptive pills deplete B12 levels.

We wish you all the best. Please let us know how it goes.

Posted: **Tue Apr 21, 2015 10:17 am**

Hi lyndacarol, thanks for the response.
I do have two sons. However they are not that young. My oldest is 7 and my youngest is 4. I also do not take oral contraceptives.

I just saw my GP again today as she asked me to return if any of the weakness returned. She basically said she cannot do anything until shes see's my blood work, which I completely understand. I am a bit anxious as we are headed to Disneyland tomorrow for 6 days and I am worried I won't be able to keep up. My fatigue is pretty bad right now. I go for my blood work on the 28th, so will hopefully have those results by the beginning of May. Is there any over the counter supplements I can take that may help with the fatigue?

She is still just sending me for an MRI, not a referral to a neurologist. When my GP sends me for an MRI, who reviews the images? Is it just a general radiologist? Or a neurologist? I am in Canada, If I can get a copy of my images I am wondering if I contact a Neurologist who specializes in MS if I can simply send my images to them to review.

So many questions, so little answers! I can't imagine how everyone handles all of this. I feel like I'm drowning in what if's. I am still not sure if I am convinced this is the right avenue, or if I am just deficient in something. Hoping the blood work will give me an easy answer.

Thanks!

Posted: **Tue Apr 21, 2015 11:31 am**

"are your symptoms bad 100% of the time during that relapse, or do they symptoms sometimes come and go?"

Everyone is different. Both are common.

"Is there any over the counter supplements I can take that may help with the fatigue?"

It is possible, but it depends on what the cause of the fatigue is. That is what the blood work and MRI will determine. You need to be patient.

Posted: **Tue Apr 21, 2015 1:43 pm**

admackenzie wrote:I do have two sons. However they are not that young. My oldest is 7 and my youngest is 4. I also do not take oral contraceptives. (There are many other medications and events that can cause a B12 deficiency – antacids, NSAIDs, PPI's like Nexium and Prevacid, even nitrous oxide which is used in anesthesia – even sometimes for dental surgery, and other medications.)

I just saw my GP again today as she asked me to return if any of the weakness returned. She basically said she cannot do anything until shes see's my blood work, which I completely understand. I am a bit anxious as we are headed to Disneyland tomorrow for 6 days and I am worried I won't be able to keep up. My fatigue is pretty bad right now. I go for my blood work on the 28th, so will hopefully have those results by the beginning of May. Is there any over the counter supplements I can take that may help with the fatigue? (Vitamin B supplements should not be taken before any testing, as they may skew the test results. As Elliot says, it is best to await the blood test results and discuss them with your doctor before trying any over-the-counter supplements.… By the way, I wonder how long you have had your symptoms.)

She is still just sending me for an MRI, not a referral to a neurologist. When my GP sends me for an MRI, who reviews the images? Is it just a general radiologist? Or a neurologist? (I am not familiar with the Canadian health care system; I assume MRIs there are read by a radiologist on staff at the hospital.) I am in Canada, If I can get a copy of my images I am wondering if I contact a Neurologist who specializes in MS if I can simply send my images to them to review.

So many questions, so little answers! I can't imagine how everyone handles all of this. I feel like I'm drowning in what if's. I am still not sure if I am convinced this is the right avenue, or if I am just deficient in something. Hoping the blood work will give me an easy answer.

Posted: **Wed Apr 29, 2015 5:11 pm**

Thanks for the responses! I had my blood work done and my MRI is booked for Oct 10. Yes super long wait. My doc is looking into surrounding cities to see if that would be faster.

Thanks!

Posted: **Fri May 01, 2015 10:41 am**

So I just got my bloodwork results and everything is normal, including my B12 - 286 (155-700 pmol/L)
There is literally nothing even a bit high or low, I am right in the middle for everything. Not going to lie, I was kind of hoping something would come up on there and give me an easy answer! Here are my results in case anyone has any insight!
TSH 0.59 (0.20-4.00) mIU/L
Vit B12 286 (155-700)pmol/L
Estimated GFR 105
Creatine serum - 68 (35-100)umol/L
CBC
Hemoglobin 130 (120-160) g/L
Hematocrit 0.39 (0.36-0.48) L/L
RBC 4.2 (4.0-5.6) 10E12/L
MCV 95 (82-100)fL
MCHC 330 (320-360)g/L
RDW 13.5 (11.0-16.0) %
Platelet count 169 (150-400) 10E9/L
WBC 7.1 (4.0-11.0) 10E9/L
Neutrophils 4.8 (2.0-9.0) 10E9/L
Lymphocytes 1.8(0.5-3.3) 10E9/L
Monocytes 0.4 (0.0-1.0) 10E9/L
Eosinophils 0.1 (0.0-0.7) 10E9/L
Basophils 0.0 (0.0-0.2) 10E9/L
Creatine Urine 21.42 mmol/L
Protein Urine 0.09 g/L

My symptoms have actually resided for the most part. I still have some tingling in my left leg most of the day and feet in the evening, but so much better then they were. Now the waiting game for the MRI. I'm just wondering if I should go ahead and ask for a referral to neurologist in the mean time? Has anyone had their MS diagnosed by the radiologist who reads the MRI/their family practitioner?

Posted: **Fri May 01, 2015 4:21 pm**

admackenzie wrote:So I just got my bloodwork results and everything is normal, including my B12 - 286 (155-700 pmol/L)
There is literally nothing even a bit high or low, I am right in the middle for everything. Not going to lie, I was kind of hoping something would come up on there and give me an easy answer! Here are my results in case anyone has any insight!
TSH 0.59 (0.20-4.00) mIU/L
Vit B12 286 (155-700)pmol/L
Estimated GFR 105
Creatine serum - 68 (35-100)umol/L
CBC
Hemoglobin 130 (120-160) g/L
Hematocrit 0.39 (0.36-0.48) L/L
RBC 4.2 (4.0-5.6) 10E12/L
MCV 95 (82-100)fL
MCHC 330 (320-360)g/L
RDW 13.5 (11.0-16.0) %
Platelet count 169 (150-400) 10E9/L
WBC 7.1 (4.0-11.0) 10E9/L
Neutrophils 4.8 (2.0-9.0) 10E9/L
Lymphocytes 1.8(0.5-3.3) 10E9/L
Monocytes 0.4 (0.0-1.0) 10E9/L
Eosinophils 0.1 (0.0-0.7) 10E9/L
Basophils 0.0 (0.0-0.2) 10E9/L
Creatine Urine 21.42 mmol/L
Protein Urine 0.09 g/L

My symptoms have actually resided for the most part. I still have some tingling in my left leg most of the day and feet in the evening, but so much better then they were. Now the waiting game for the MRI. I'm just wondering if I should go ahead and ask for a referral to neurologist in the mean time? Has anyone had their MS diagnosed by the radiologist who reads the MRI/their family practitioner?

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/

On page 11:

"There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).

… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.

At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…

We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL and 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury."

Compare your B12 test results to those recommended by the authors. These authors suggest that the B12 level should be at 1000 pg/mL or more if a patient presents with neurologic symptoms. Page 205: pmol/L = pg/ml x 0.738 (Your value of 286 pmol/L equals 388 pg/ml., which falls within Pacholok-Stuart's "gray zone.") In my opinion, your test results warrant further testing – at least a serum homocysteine (Hcy) test and a methylmalonic acid (MMA) test. If your GP/family doctor does not feel comfortable with such testing, ask for a referral to a hematologist.

Their website: http://b12awareness.org/

Your MCV (mean corpuscular volume) value (95) at the high-end of the standard range (82-100) indicates megaloblastic anemia (a form of macrocytic anemia), which is a late sign of a B12 deficiency (and can also be a sign of folate deficiency). The following 13-minute video may be rather technical; but (@9:51) a chart explains – B12 Deficiency & folate deficiency = low hematocrit, high MCV, high homocysteine; BUT a B12 deficiency will exhibit a high methylmalonic acid level and neuro symptoms – a folate deficiency will not exhibit these signs:

Posted: **Sun May 03, 2015 9:01 am**

please consider, adm, that a narrow emphasis on b12 misrepresents the more complex nutritional profile of an average ms patient.

for the bigger picture, you might want to check out http://www.thisisms.com/forum/natural-approach-f27/

your low-end b12 result suggests that it may be worth your while to look at a few other things, with the caveat that doctors are often ill-equipped to interpret the lab results. there's lots of info here to help you interpret lab findings from an ms patient's perspective

Posted: **Sun May 03, 2015 11:57 am**

I'm just wondering if I should go ahead and ask for a referral to neurologist in the mean time?

Yes- definitely get a referral. It will take a lot of time before a specialist will see a new patient, so its best to get that moving now. Also, once you are involved with a neurologist, they may be able to get the MRI sooner for you. Also, the neurologist probably won't wait for the MRI to get you going with some high dose steroids for a few days. Best wishes

Posted: **Sun May 03, 2015 5:46 pm**

Thanks everyone! I am going to read those articles about the b12 deficiency when I have adequate time to really devote to it. What is done for a B12 deficiency? Just supplements?

Posted: **Sun May 03, 2015 7:18 pm**

Posted: **Sun May 03, 2015 10:11 pm**

admackenzie wrote:Thanks everyone! I am going to read those articles about the b12 deficiency when I have adequate time to really devote to it. What is done for a B12 deficiency? Just supplements?

You can do either B12 injections or take supplements. B12 injections usually use the cyanocobalamin form. However, the body assimilates the methylcobalamin form best. The latter is available from compounding pharmacies though. As far as supplements go, there are four forms available, cyanocobalamin, methylcobalamin, adenosylcobalamin (a form used by the mitochondria in odd chain fatty acid metabolism), and hydroxocobalamin.

Last Spring I was found to be B12 deficient most likely due to a deficiency in folate which is used to recycle cobalamin back to the active methylcobalamin form. I now take a sublingual methylcobalamin supplement and a sublingual methylfolate supplement. Note that not all supplements are created equally. I once ran out of the B12 I normally take so I switched over to a Jarrow brand which we had in the house. After 5 days I was quite run down both mentally and physically and switched over to a different brand. Twenty minutes later it was like the sun burning off the fog and I could think clearly again.

Posted: **Mon May 04, 2015 7:03 am**

admackenzie wrote:Thanks everyone! I am going to read those articles about the b12 deficiency when I have adequate time to really devote to it. What is done for a B12 deficiency? Just supplements?

Don't get ahead of yourself, admackenzie. I suggest:

1. See your GP/family doctor or start again with a hematologist and…
2. Confirm first that you do indeed have a B12 deficiency. You have had one serum B12 test (with a "gray zone" result of 286 pmol/L, a.k.a. 388 pg/mL). Ask for further testing: #1 HoloTc test, if available in your area; #2 serum folate test; #3 serum homocysteine test; and #4 serum methylmalonic acid test – the urinary test form is more accurate and less expensive. Do not simply start taking vitamin B supplements on your own – this can skew test results.
3. If you have a deficiency, consider the info from NHE and discuss your course of action with your doctor. The cause of the deficiency will determine whether you take oral supplements (Is there a lack of B12 in the diet?) or injections (Perhaps there is a malabsorption problem – your digestive system is unable to absorb B12. Gastritis? Gastric surgery?). Or perhaps you are deficient in transcobalamin, the transporter molecule that carries B12 from the blood to the cells.
4. If your action plan includes injections, be aware that the injections given in doctors' offices in the US is the cheaper, poorly absorbed cyanocobalamin form – again, note the info from NHE (the more bioavailable form, methyl-cobalamin, can be prescribed and is available from a compounding pharmacy).

Posted: **Mon May 04, 2015 11:53 am**

I just feel like crying.
Okay so a bit of back history. I am a former fitness competitor. My last competition was in Nov. All of my symptoms (other than fatigue) started about 2 months ago. In the past month I have been unable to work out. Partially due to the fatigue, partially due to limb weakness. For example my hands will give out and be unable to hold a dumbbell before my muscle actually fatigues.
So today I woke up feeling very motivated and wanting to push through the "mental barrier" I am telling myself I have set. So I decided after work (I am a personal trainer) I would do 15 min on the stair master. The past three days my symptoms have been pretty good, other than a lingering ache/tingle in my left leg and sometime left arm. On the stair master this feeling slowing intensified and got to the point where I could no longer hold on with my left hand. I slid off the machine and went and sat down for a while. Not only that I had tunnel vision in my left eye.
I just feel like screaming! I feel like some days maybe I am just making up all these symptoms and I am just being a big baby. Then something like this happens and I get so frustrated and feel so defeated. I am trying so hard to be patient, but I am typically a very active person and this is killing me. Just needed to vent... I can't imagine how frustrating this is for people who have dealt with this for months or years with no diagnosis or a delayed diagnosis. I don't know if I am strong enough for that.

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