Undiagnosed.... Single mom freaking out

[KnJsmommy]

Hi, I'm new to this site, and not sure if I'm posting in the right place... but any advice is greatly appreciated. I have been experiencing symptoms for several years now, but lately they have been worsening. My previous GP suspected fibromyalgia (about 9yrs ago), but my current GP is not convinced that's the actual problem.
I am a 39yr old single mom of 2 pre-schoolers, and I barely have the energy to keep up with them during the day... I'm just exhausted, even after a full night's sleep. I am now suffering bladder incontinence, painful spasms in my lower back, dizziness, pain & pressure behind my left eye, frequent severe headaches (including halos & nausea), and an intense high-pitched ringing (like the pressure & sound when ur in a plane at 30,000ft), my knees buckle from under me a lot, tingling in the soles & tops of both feet, sharp pain in my right forearm, and twitching in my right hand, as well as numb/tingling thumb, pinky & ring finger. I have also developed chronic hypertension, and hydronephrosis in one kidney. My condition has worsened to the point my GP is concerned enough that he wants to check me for MS, Vertigo & Lupus. The only reason that he hasn't yet done so is that last week he diagnosed me with acute sinusitis, and said that the infection would affect the test results. He did however run a full blood work-up on me, and prescribed Augmentin & Prednisolone for the sinus thing. I already have pre-existing anxiety & depression issues, and the suspense is totally freaking me out. I don't believe I would have Lupus, because I ghave a good friend with it, and his symptoms are not like mine (tho I admit, I don't know much about Lupus). Has anyone experienced these symptoms & does MS sound likely?

[Scott1]

Hi,

I do not understand why you haven't been referred to a neurologist. Has that happened?

Regards,

[lyndacarol]

Hi, I'm new to this site, and not sure if I'm posting in the right place... but any advice is greatly appreciated. I have been experiencing symptoms for several years now, but lately they have been worsening. My previous GP suspected fibromyalgia (about 9yrs ago), but my current GP is not convinced that's the actual problem.
I am a 39yr old single mom of 2 pre-schoolers, and I barely have the energy to keep up with them during the day... I'm just exhausted, even after a full night's sleep. I am now suffering bladder incontinence, painful spasms in my lower back, dizziness, pain & pressure behind my left eye, frequent severe headaches (including halos & nausea), and an intense high-pitched ringing (like the pressure & sound when ur in a plane at 30,000ft), my knees buckle from under me a lot, tingling in the soles & tops of both feet, sharp pain in my right forearm, and twitching in my right hand, as well as numb/tingling thumb, pinky & ring finger. I have also developed chronic hypertension, and hydronephrosis in one kidney. My condition has worsened to the point my GP is concerned enough that he wants to check me for MS, Vertigo & Lupus. The only reason that he hasn't yet done so is that last week he diagnosed me with acute sinusitis, and said that the infection would affect the test results. He did however run a full blood work-up on me, and prescribed Augmentin & Prednisolone for the sinus thing. I already have pre-existing anxiety & depression issues, and the suspense is totally freaking me out. I don't believe I would have Lupus, because I ghave a good friend with it, and his symptoms are not like mine (tho I admit, I don't know much about Lupus). Has anyone experienced these symptoms & does MS sound likely?

Welcome to ThisIsMS, KnJsmommy. Since you stated that "any advice is greatly appreciated," I offer you my thoughts:

All your symptoms are common to many conditions, MS is just one possibility. But MS is a diagnosis of exclusion, made only after other more likely causes have been ruled out.

One of the possibilities for your symptoms is vitamin B12 deficiency. Any person at any age can develop B12 deficient. Pregnancy and breast-feeding are particularly demanding on B12 and increase the risk for deficiency. The symptoms of MS and the symptoms of B12 deficiency look exactly the same; the two conditions can only be distinguished by testing – there is NO definitive testing for MS; there IS testing to uncover B12 deficiency.

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/
Or… With 2 preschoolers, perhaps it's easier to watch a YouTube video:



Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12" (52 min.)

The 4 initial tests for B12 deficiency are not expensive:
From page 156 of What's Wrong with My Child? by Sally M. Pacholok, RN, BSN and Jeffrey J. Stuart, D.O.:

Costs (approximate) of commonly used blood tests for B12 deficiency:

Serum B12 (outdated test)… $50
HoloTc (newer, more reliable)… $118
Serum homocysteine… $147
Methylmalonic acid test (serum or urinary form)… $150

In my opinion, these tests should be routine for anyone presenting with neurological symptoms.

As you may know, vitamin B12 is water-soluble – it is excreted through the kidneys. I don't know how your hypertension and hydronephrosis (swelling of your kidney – not a disease in itself) might affect your B12 level; but I encourage you to discuss B12 and possible testing with your GP.

It is estimated that 40% of the American population has suboptimal B12 levels; this is not a rare condition. If this is the cause of your symptoms, B12 deficiency is easily and inexpensively treated (HOWEVER, do not simply start to self-treat with supplements, especially if testing will be done. Taking vitamin B supplements before testing will skew the test results.)

[KnJsmommy]

Thank you LyndaCarol. I will certainly have him look for B12 specifically. The neurological symptoms are what scare me the most, along with the loss of balance & coordination. I'm not breastfeeding at all. My oldest was the only one that was breastfed, due to my younger son being a preemie & needing a special formula. It's been nearly 4yrs my oldest was weaned. I might also add that last night, a new symptom emerged... I have a tightness in my upper abdomen, diaphragm to be exact, accompanied by severe reflux, diarrhea, nausea & vomiting. I don't have a fever (my temp is actually kinda low), and my kids ate the exact same foods as I did over the past several days, and they are not having tummy trouble, so I don't think it is food related. The tingling & twitching in my hand hasn't changed either. I have already called my GP, but haven't heard back from him yet. If worse comes to worse, & I don't hear back from him, I will probably go to the ER this evening, if I don't start feeling better.

[lyndacarol]

I will certainly have him look for B12 specifically. The neurological symptoms are what scare me the most, along with the loss of balance & coordination. I'm not breastfeeding at all. My oldest was the only one that was breastfed, due to my younger son being a preemie & needing a special formula. It's been nearly 4yrs my oldest was weaned. I might also add that last night, a new symptom emerged... I have a tightness in my upper abdomen, diaphragm to be exact, accompanied by severe reflux, diarrhea, nausea & vomiting. I don't have a fever (my temp is actually kinda low), and my kids ate the exact same foods as I did over the past several days, and they are not having tummy trouble, so I don't think it is food related. The tingling & twitching in my hand hasn't changed either. I have already called my GP, but haven't heard back from him yet. If worse comes to worse, & I don't hear back from him, I will probably go to the ER this evening, if I don't start feeling better.

From the video:

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

(@51:00)
Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment
Visual Disturbances
Migraine and headaches
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

Risk factors for B12 deficiency:
Vegetarian Diet
Pregnancy
Age over 50
Low Stomach Acid
Celiac Disease
Food Allergies
Eating Disorders Parasites
Use of Acid-Blockers
Use of Oral Birth Control Pills
Use of Metformin
Nitrous Oxide Anesthesia
Pernicious Anemia
Autoimmune Disorders
Pancreatic Insufficiency
Stomach Surgery
Intestinal Bacterial Overgrowth
Peptic Ulcer
Transcobalamin Deficiency

Incontinence can also be the result of B12 deficiency (mentioned in video along with back pain, nausea, tinnitus a.k.a. "ringing in ears," numbness/tingling/pain in hands, arms, feet, or legs a.k.a. "peripheral neuropathy," balance problems – all your symptoms seem to be there… even premature delivery of offspring is mentioned in the last case in the video, the story of Torri)

[KnJsmommy]

Thx again LyndaCarol. My son was delivered prematurely because I was already ultra-high risk & had developed pre-eclampsia. Not only that, he was failing to thrive thx to an incompetent placenta. He was jaundiced & developed asthma, and was having trouble gaining weight for several weeks. I know that you're not a dr, but could this have been caused by a possible B12 deficiency?

[lyndacarol]

My son was delivered prematurely because I was already ultra-high risk & had developed pre-eclampsia. Not only that, he was failing to thrive thx to an incompetent placenta. He was jaundiced & developed asthma, and was having trouble gaining weight for several weeks. I know that you're not a dr, but could this have been caused by a possible B12 deficiency?

I am not a doctor, I have no medical background. In my opinion, the difficulties surrounding the birth of your son could most definitely have been caused by a possible B12 deficiency.

On page 179 in the book, Could It Be B-12? An Epidemic of Misdiagnoses:

Researchers aren't yet sure why B12 deficiency makes it difficult to conceive a baby or to carry a baby to term. Dr. Bennett and his colleagues suggest that deficient B12 levels interfere with ovulation or normal cell division in the fertilized ovum, and that changes in the uterine lining due to B12 deficiency prevent implantation. The high homocysteine levels that can result from poor B12 status, they say could cause fetal death by contributing to thrombosis (abnormal blood clotting), inadequate blood supply to the placenta, preeclampsia (which can lead to convulsions), premature separation of the placenta, or fetal growth retardation.

(As you will recall, the serum homocysteine test should be one of the initial B12 tests. When B12 is low, homocysteine will be high – or in other words, a high homocysteine level indicates that B12 is low.)

On page 300 in the same book:

Appendix G: Signs and Symptoms of B12 Deficiency In Infants and Children
developmental delay
developmental regression
apathy
irritability
hypotonia
weakness
tremor
involuntary movements
seizures
ataxia
anorexia
failure to thrive
poor weight gain
and 9 other effects

I suspect that your vitamin B12 level was low, possibly deficient, while you were pregnant with this child. It is also possible (with his symptoms, which you described) that he was born with his own B12 deficiency; even now, it might be worthwhile to have his B12 level checked – I know that no mother wants her child to be stuck for a blood draw, but it is important to his growth and development to know that his B12 level is adequate.

Again, in their book, on page 11, these authors state: “For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/mL.” and on page 253: “Humans and other mammals are all born with serum levels of about 2,000 pg/ml, which decline gradually throughout life.” (J.V. Dommisse)

I think a vitamin B12 levels for both you and your son should be determined.

[KnJsmommy]

Thank you. All my labs came back normal, except my iron which was at 33.5. My GP said its still "normal limits", but on the low side. I did ask about B12, and he said he did check it, and it's well within normal limits. He has ordered brain MRIs, using both contrast & non, as well as cervical & lumbar X-rays. I've also been referred to an Allergist, ENT & Neurologist. He said hopefully we'll get some clear answers about what's really going on, but he isn't ruling out MS or Lupus

[Scott1]

Hi
Nausea and Vomiting and reflux sound like you have a bug.

Did you do tests for cryptosporidium or similar bacteria? Did you get tested for lower intestinal pathogens via fecal test?
I'd be looking in those places first.

Regards

[lyndacarol]

All my labs came back normal, except my iron which was at 33.5. My GP said its still "normal limits", but on the low side. I did ask about B12, and he said he did check it, and it's well within normal limits. He has ordered brain MRIs, using both contrast & non, as well as cervical & lumbar X-rays. I've also been referred to an Allergist, ENT & Neurologist. He said hopefully we'll get some clear answers about what's really going on, but he isn't ruling out MS or Lupus

In general, it is a good idea to request copies of your test results. You have the actual number (33.5) for your iron. Do you have the actual numbers for your serum B12? On the report, the standard range will be identified – please be aware that many experts believe that the standard range for B12 is set too low by US labs. In Japan, any patient with a B12 level less than 500 pg/mL is considered deficient and is treated for a deficiency. By contrast, many US labs have set the cutoff at 200 pg/mL. What does your GP consider "normal limits?"

Do you have the actual numbers for the homocysteine test and the methylmalonic acid test? Would you share them with us?

(By the way, iron levels are often low with B12 deficiency.)

[KnJsmommy]

I will have to get a copy of the labs for specifics. He didn't discus anything other than my iron, b/c he's only concerned about that one in particular. I got to looking over the requested radiology tests, and noticed he also ordered a neurological one. He didn't really explain the procedure, but I'm supposed to have an NCV done. What is that, and is it painful? And what is the difference between a contrast & non-contrast MRI? And is a brain MRI sufficient, or should he have ordered neck/ spinal MRIs as well? He's just my GP, not neuro, I'm still waiting on a call back to schedule that appt, but I do have an appt w/ allergist on 17th. The ENT that he referred me to no longer accepts my insurance, so I have to get a new referral before I can try to find out why I'm so dizzy all the time & have this constant ringing in my head. Thx again for all the info about B12 deficiencies... I'm sure one of these Drs will let me see the test results!

[jimmylegs]

ncv is nerve stuff no big deal but the electrode can be kinda no fun if they press hard
http://www.neurologyinc.com/wp-content/ ... 11/NCV.png

[KnJsmommy]

Still waiting on MRI & NCV, as well as appt. w/ neurologist. However, I did go to allergist this week.... Apparently I'm highly allergic to several things, but aside from my sinus issues, none of them are the cause of my symptoms. And now I have a new symptom to add to the list... Multiple muscles spasming at once. Literally! Last night, I was sitting on the couch & my left thigh started. Then my right butt cheek, then my right calf, and finally my upper right arm & shoulder. I've never had that happen all at once before, and while it finally quit after about 45min for the most part, my upper arm is still spasming. I am exhausted today as a result, cuz it made it very difficult to sleep!! Any suggestions on how to manage the spasms?

[ElliotB]

Sorry you are not doing well. Exercise and massage may help.

Also, consider going totally gluten free and minimize saturated fat intake.

[Scott1]

" I might also add that last night, a new symptom emerged... I have a tightness in my upper abdomen, diaphragm to be exact, accompanied by severe reflux, diarrhea, nausea & vomiting. "

These are your words. I think you need to stop trying to fit the symptoms into a box. Particularly one called MS. Those symptoms are more likely to be the result of infection.

Can I suggest you revisit your doctor and just talk about those symptoms only? Get a blood test and a fecal test for as many different bugs as your doctor can think of. Try cryptosporidium and helicobacter pylori as a start. Do these symptoms have cycles that runs in hours, days, weeks, months etc.

You are retrofitting symptoms unless you work from an informed opinion. That means tests.

Regards,