Distressed and seeking advice

[th1982]

Hi, I am hoping to have some advice/opinions from people who have some knowledge. For 6 years now I have been made to feel like a hypochondriac, I am continuously told I'm depressed/anxious or dismissed as being dramatic. I just really would do anything for some answers. As I have moved around the world in the past few years, it has been hard to get a Dr who takes me seriously but finally I have found one and have been referred to a Neurologist and for periphery nerve studies but they are unable to give me an appointment for 6 weeks and as I am waiting this episode seems to be lasting longer and more severe than others in the past.

My story is that for 6 years, roughly 12/18/24 months apart, I have periods of extreme tiredness, numbness/tingling, deep emotional upset, aches and pains and headaches. Like some of the flu symptoms without the flu. The first time it happened was a couple of months after my second child was born. I began to have strange tingling sensations in my fingers, knuckles and wrists. The Dr wasn't very helpful, asked a few questions about arthritis, ruled it out and told me it was nothing. I was very tired at the time but put it down to being a new mother again.

The second time it happened was a year or so later. I was having continuous headaches, they were severe but not migraines. They were present 24 hours constantly. When I woke up until I went to bed. One day I woke up and I had no headache, it was like silence in my head. No fuzziness and for the first time in weeks I could think clearly, no brain fog and I started crying with relief. The Dr said they were caused by stress. I also had the tingling but this time my right arm was tingling and going pins and needles too, as was my scalp. I thought had head lice, so determined was I that I made everyone in my family keep checking as i thought lice were crawling along my head. Then i realised it was pins and needles. The Dr wouldnt take me seriously and eventually it passed.

The third episode was when my son was 3. The headaches came back with vengeance. Both my arms/scalp/fingers and now toes were feeling numb and tingling with pins and needles. When I say numb, I can still feel sensation, it is like when have been laying on your arm and it goes asleep. The way I describe it is numbness followed by a rush of warmth followed by pins and needles, it is like a cycle of these sensations. This time I was feeling dizzy and disorientated. The brain fog was making it hard to function and communicate properly. I was spending days in bed and unable to follow conversations. I went to Dr and this time my bloods showed low b12 levels so they gave me the serum injections, three over 10 days and told me to come back every 3 months. I have never needed a b12 injection again. A few weeks later it passed and I was back to normal.

The 4th episode came roughly the same time as my mum was diagnosed with Coeliac. I was in a bad way and went to the Dr and asked if Coeliac could be the cause of my symptoms as I had heard it was hereditary and when i was helping my mum to come to terms with her diagnosis we came across symptoms which were similar to mine. H was rude and told me no as I didn't have the history of bowel problems that my mum had and that my problem was depression and anxiety, and tried to prescribe anti depressants. We had a huge argument where he finally agreed to take some blood and check for anti bodies for coeliac. The bloods came back negative. He again told me I was depressed. I just didn't understand. I didn't feel depressed. I didn't think I was depressed or anxious??? I didn't understand why these symptoms would come and go. I refused the anti depressants and waited for the symptoms to go again.

Now, at the present time. I have had the worst episode to date I am on Week 3 of barely functioning. The tiredness is extreme. I have spent days couch surfing. Laying in bed around the school drop offs and pickups. I haven't cooked a meal apart from ready meals and oven dinners. My house needs a good cleaning but i just cannot find the energy. I am a Beauty Therapist and am always very well presented but my appearance during these episodes becomes very poor. This time I am barely washing. I haven't blow dried my hair in 2 weeks. This sounds so silly but for me, this is very strange. I have started keeping a diary of the physical symptoms (on advice from a friend) and it is frightening me. The numbness/tingling/pins and needles is so much more severe this time. It switches from left to right, sometimes a right arm but a left leg. I was shaking my arm so hard and my friend asked me what I was doing, i was determined there were ants marching all over it but she was laughing saying nothing was there and neither there was. My knees are aching to the point I can't sleep for it. My body aches. I haven't had any headaches though which I am grateful for. I went to the Drs a week ago and told her i thought maybe my b12 levels were low and that was causing it so she took blood but they came back all clear, she said all my vitamin levels were normal. She checked for diabetes, thyroid and a million other things and all clear. I got upset and told her this history so she has made the referrals, it is just a waiting game now to see the specialist. She asked about my eyesight and if I had any problems. I told her around 18 months ago I went to the Eye Dr as I was struggling to focus. They said my left eye was slightly lazy muscle and the double vision/focus was the muscle getting tired. The Dr nodded and I asked why she wanted to know and she said eyesight problems are one of the first symptoms of MS but she didn't think my eye problem sounded like that. But the Neurologist would be better placed to help figure it all out. She sent off for more blood tests in the meantime but they have come back clear too. Of course I came home and googled and now i am panicking. I just want to know if MS sufferers recognise my story or have heard of similar which turned out to be something else. 6 weeks is not a long time to wait I understand but I feel like I am going mad.

[ElliotB]

MS presents itself differently to everyone, and there are around 400 illnesses that mimic the symptoms of MS.

In any case, what you have is obviously not normal, and the good news is there are a lot of things that you can do for yourself to help yourself feel better.

What kind of diet are you following? How much exercise do you do? How is your weight? Do you take any vitamins/supplements? Do you have a stressful job/life?

Are you seeing a doctor now? What is his/her opinion?

Have you done complete blood work?

[lyndacarol]

I am hoping to have some advice/opinions from people who have some knowledge.

… The first time it happened was a couple of months after my second child was born. I began to have strange tingling sensations in my fingers, knuckles and wrists. The Dr wasn't very helpful, asked a few questions about arthritis, ruled it out and told me it was nothing. I was very tired at the time but put it down to being a new mother again.

… I went to Dr and this time my bloods showed low b12 levels so they gave me the serum injections, three over 10 days and told me to come back every 3 months. I have never needed a b12 injection again. A few weeks later it passed and I was back to normal.

… I went to the Drs a week ago and told her i thought maybe my b12 levels were low and that was causing it so she took blood but they came back all clear.…

… I just want to know if MS sufferers recognise my story or have heard of similar which turned out to be something else.

Hi and welcome to ThisIsMS, th1982.

In the fourth paragraph of your post – where you describe having had low B12 levels – there may be the clue to your ongoing symptoms: a few weeks after B12 injections you were "back to normal." Although a week ago your doctor took blood for a B12 test and found the blood level was good, please be aware that you can still have a B12 deficiency in the tissues (cells) if you do not have the transporter molecule (or enough of it) to carry B12 into the cells. This can be checked with a HoloTranscobalamin (a.k.a. HoloTc) blood test.

(By the way, you reported, "The first time it happened was a couple of months after my second child was born;" pregnancy is a very large drain on the mother's B12 stores.)

I find some of your symptoms in the list in this video:



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

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

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue ("extreme tiredness")
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment ("brain fog")
Visual Disturbances ("18 months ago… struggling to focus")
Migraine (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

Given your history, and the fact that B12 is a water-soluble vitamin (any amount not needed by your body is flushed out in urine) and is non-toxic and is inexpensive, I wonder if your doctor, or the neurologist you will see in 6 weeks, would be willing to let you have a therapeutic trial of B12 injections. If the problem lies in getting B12 from the bloodstream to the cells, you might need B12 injections for life. This is definitely something to discuss with your doctors.

[Scott1]

Hi,
I didn't see you say you had a diagnosis of MS. I do think you sound like you have an infection. Check if you have Mycoplasma Pneumoniae, Mycoplasma fermentans or similar. If its in your part of the world, look for Bartonellas as well as chlamydia. If they are negative we can explore the world of Epstein-Barr virus.
To check if something is awry see what your uric acid level is. If it is outside a normal range then come back to us. Also, I like to see what the fasting amino acid levels look like. If you are low in some it can be indicative of an infection at a minimum.
Regards,

[th1982]

MS presents itself differently to everyone, and there are around 400 illnesses that mimic the symptoms of MS.

In any case, what you have is obviously not normal, and the good news is there are a lot of things that you can do for yourself to help yourself feel better.

What kind of diet are you following? How much exercise do you do? How is your weight? Do you take any vitamins/supplements? Do you have a stressful job/life?

Are you seeing a doctor now? What is his/her opinion?

Have you done complete blood work?

Thank you. I have had two lots of full blood tests for everything the Dr can think of and they keep coming back clear. I have a normal bmi, which is slightly high for me as I tend to be on the thinner side, I eat well. I don't drink and don't smoke. I am a beauty therapist who works part time from home. Married with two children. Life is very good, no stress no financial worries. The Dr has been very thorough with what she can do but has referred me for peripheral nerve studies and for a brain mri. I'm hoping this rules MS out. I just can't think of what else it can be apart from coeliac. I have another appointment tomorrow with my GP and I am going to ask her to refer me for a biopsy to either rule out or confirm. I have been eating a lot of gluten recently but no more than any other normal person. My vitamin levels are all normal. I take a multi Vit, omega 3 and pro biotics.

[th1982]

I am hoping to have some advice/opinions from people who have some knowledge.

… The first time it happened was a couple of months after my second child was born. I began to have strange tingling sensations in my fingers, knuckles and wrists. The Dr wasn't very helpful, asked a few questions about arthritis, ruled it out and told me it was nothing. I was very tired at the time but put it down to being a new mother again.

… I went to Dr and this time my bloods showed low b12 levels so they gave me the serum injections, three over 10 days and told me to come back every 3 months. I have never needed a b12 injection again. A few weeks later it passed and I was back to normal.

… I went to the Drs a week ago and told her i thought maybe my b12 levels were low and that was causing it so she took blood but they came back all clear.…

… I just want to know if MS sufferers recognise my story or have heard of similar which turned out to be something else.

Hi and welcome to ThisIsMS, th1982.

In the fourth paragraph of your post – where you describe having had low B12 levels – there may be the clue to your ongoing symptoms: a few weeks after B12 injections you were "back to normal." Although a week ago your doctor took blood for a B12 test and found the blood level was good, please be aware that you can still have a B12 deficiency in the tissues (cells) if you do not have the transporter molecule (or enough of it) to carry B12 into the cells. This can be checked with a HoloTranscobalamin (a.k.a. HoloTc) blood test.

(By the way, you reported, "The first time it happened was a couple of months after my second child was born;" pregnancy is a very large drain on the mother's B12 stores.)

I find some of your symptoms in the list in this video:



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

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

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue ("extreme tiredness")
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment ("brain fog")
Visual Disturbances ("18 months ago… struggling to focus")
Migraine (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

Given your history, and the fact that B12 is a water-soluble vitamin (any amount not needed by your body is flushed out in urine) and is non-toxic and is inexpensive, I wonder if your doctor, or the neurologist you will see in 6 weeks, would be willing to let you have a therapeutic trial of B12 injections. If the problem lies in getting B12 from the bloodstream to the cells, you might need B12 injections for life. This is definitely something to discuss with your doctors.

Thank you for your reply. I have another appointment with my GP tomorrow and I will speak to her about this other b12 test. It would be a huge relief if it was B12.

[th1982]

Hi,
I didn't see you say you had a diagnosis of MS. I do think you sound like you have an infection. Check if you have Mycoplasma Pneumoniae, Mycoplasma fermentans or similar. If its in your part of the world, look for Bartonellas as well as chlamydia. If they are negative we can explore the world of Epstein-Barr virus.
To check if something is awry see what your uric acid level is. If it is outside a normal range then come back to us. Also, I like to see what the fasting amino acid levels look like. If you are low in some it can be indicative of an infection at a minimum.
Regards,

Thank you Scott for your reply. I will speak to my GP tomorrow about an infection. She has tested my bloods fasted and I'm sure on the list I gave to the phlebotomist amino acids were on this but when I go tomorrow I will ask for a copy of the results. I will speak to her about the other things you mentioned although I know I can rule out one or two of them. Thank you for your reply. Every suggestion mentioned to check is welcomed to try and get to the bottom of this. It's been an awful long day today with my arms and scalp and legs being very numb and heat and pins and needles and strange sensations all over. My only thought with the infection is would it not have been picked up over the past 6 years? Or do you think it could be a recurring infection?

With regards to the

[Scott1]

Hi,

A recurring infection probably just means an infection. Sometimes it can take years to present so the relationship between cause and outcome can be hard to establish. It's easier to look for the infection than to work out if having it logical. You can probably for 3000 mycoplasma on a pin head yet than can wreck havoc. Humans have lost of infections and bacteria living on them. Sometimes its harmless and for some it isn't. Chasing this stuff down is a matter of being evidence based. Sometimes you need to check multiple times (ie Lyme etc). Do proper DNA testing if you can. Look at symptoms and don't accept its all in your mind. Remember doctors are guessing most of the time and they are fallible. Sometimes they need a nudge.
Regards

[babykissy23]

Most of the things you wrote about describe what has been going on with me for a while now. I am waiting for MRI testing and if that comes out clear them the neurologist will do a nerve study. I am also going for vitamin b12 testing. Please keep us updated on your progress. My problems began after the birth of my first child.

[lyndacarol]

Most of the things you wrote about describe what has been going on with me for a while now. I am waiting for MRI testing and if that comes out clear them the neurologist will do a nerve study. I am also going for vitamin b12 testing. Please keep us updated on your progress. My problems began after the birth of my first child.

Welcome to ThisIsMS, babykissy23.

Vitamin B12 testing should include more than the outdated, unreliable "serum B12" test alone. The newer, more accurate HoloTc test is preferred by many doctors. In addition, the RBC folate test, the serum homocysteine test, and a methylmalonic acid test should all be done in order to determine a deficiency. (By the way, please request your own copy of any test results – it is important to have the actual test result numbers.)

Pregnancy is a great drain on the mother's vitamin B12 stores. (Breast-feeding is also.)