Doctor seems stumped!

M

Miss Shelley =)

New member
Doctors still know little about the causes of it, there's probably equal amount saying yes and no to hereditary, could be bad diet and various stomach conditions causing it, and most doctors understand so little about it he will probably only offer an injection every 2-3 months when like me i need every few weeks and have to buy my own lozenges i take 3 times a day, if you do have this make sure you research it and don't assume your doctor knows the best treatment.
 
I'd get a second opinion about that B12 level because you are only 12 points over what most doctors class as a severe deficiency, and any nurse saying a rating under 100 being alright should be struck off for apt stupidity, if nothing else just buy a bottle of 3mg or 5mg B12 lozenges and see how you feel when they finished.
 
Ok, thanks. It cant be a bad diet. My diet is healthy and well balanced. I do indulge every now and again, when I cant say no to chocolate. But I do not over-indulge.
 
I went to the doctor again yesterday, updated him with my new symptoms and had a whole raft of blood test done. He wants to send me to a Rheumatologist. He was also making noises about auto-immune and Lupus was mentioned.

I feel better that there are more tests being done, at the very least we can eliminate some causes.

Will update when I know more.

Thanks everyone!
 
Thanks, I have just ordered some Vitamin B12 drops online. Finding any sublingual forms of B12 online in NZ was acutally more difficult than I thought. I had assumed I could buy it anywhere, but only found two online shops in NZ that sell it. The local pharmacy only stocks the tablets which from what I am read, seem pointless.

Anyhow, will see how it goes and let you know :)
 
this is so interesting. when i read your first post and your symtoms, i thought you may have fibromyalgia. i am exactly as you. i was dx 2 yrs ago. now i am wondering if it could be a vitamin def. for me. I am going to the pharmacy first thing in the morning and buying some b12. well, maybe i need to get my doctor to check it-i dont know
 
Yeah you'd be surprised how often it's something as simple as this but doctors are just so ill-informed on B12, a woman near where i live was diagnosed with MS for years but as soon as she got the B12 shots her hair grew back and everything just massively improved, in UK a petition had to be put before parliament so they understand what we go through and change rules so people don't end up massively under treated, if anyone reading this is also having a lot of seemingly unrelated symptoms then just try B12 because i can guarantee a load of people here will be cured by it.
 
I am a 36 year old female with a list of symptoms and absolutely no idea if any or all of them are connected. My doctor has sent me for a few tests and after initially diagnosing me with Restless Leg Syndrome and trying a few meds, my symptoms grew and we are both stumped.

I get light exercise (45 min walk) regularly and eat healthy. I am a smoker and drink ocassionally.

I was hoping someone could help because to be honest I am over it and just want to know what on earth is wrong. Or to find a cause that makes sense, so my Doctor and I can explore remedies, even if it is to eliminate the cause. Symptoms as follows:

Hot feet - although not hot to touch, they feel like they are burning. They also swell when they are hot. There is not really any time of day or night that this happens, although perhaps a little more at night than day.

Shoulder pain - I awoke one morning and discovered that I had a pain in my left shoulder which I had assumed was a pulled muscle, until it did not go away, and then the right shoulder presented with pain also. It hurts to lift my arms above my head, reaching out for things and the pain seems to go from shoulder to arms, although I am confident that it is in the shoulder joints.

Hip pain - although constant like the shoulder pain, I often wake in the morning with pain in the hip not unsimilar to the pain in my shoulder.

Leg ache - from the knees to the ankles an achey feeling which (and this is perhaps when the doc decided it was RLs) makes e feel like I need to move them around and get more blood or oxygen to them, rubbing the muscle does relieve the pain somewhat. This ache is not constant and can occur at any time of day or night.

Arm ache - From the elbow to the wrist, also makes me feel like I need to rub or stimulate the muscle. Also get a slight tingly sensation. My hands also swell when I get this arm ache and my arms feel warm. It also makes me feel like my clothing is too tight around my arms and feel the need to remove sleeved clothing.

I started seeing a physiotherapist when I was getting headaches and feeling achey in my right shoulder blade muscle (dont know its name sorry). she discovered a knot which she has spend the last 6 months trying to remove and noted that my shoulder muscles were quite tight. This was happening prior to the start of the above metioned shoulder and hip pain.

I have had a nerve map done, where they electrocuted me around the lower legs and I was told that there was no damge to the major nerves.

My neck feels like it needs to be clicked back into place sometimes, I can roll my head, hear a click and it feels like there is less pressure, even tho the pressure was slight to begin with.

I have had numerous blood tests done, which did not reveal a lot apart from being told that I had inflamed blood. I do not know if this is still the case as it was about 12 months ago when I had the test and am not aware if this goes away on its own or not.

I have no idea if it gives any more of an idea but I also cannot kneel for long (this has been happening for years and years) because after about 1-2 mins my legs get tingly and start aching.

In the mornings sometimes I can wake and my whole back aches, but I had put this down to getting older, lol.

My jaw sometimes aches, which I do feels is due to my sometimes grinding my teeth when concentrating, but thought I would throw it in for good measure.

and I think that is about it. But if someone, anyone could shed some light on this I would so very much appreciate it. I am sick of waking up sore and achey. But I think what is harder to cope with is the fact that the list of symptoms get longer and I just dont have a clue.

Please help.
Neen0
 
Yeah same with me there's no obvious cause why it starts, just sometimes for no reason at all the antibodies in your stomach can just decide to attack the parietal cells and stop most of the B12 getting to the bone marrow, since being diagnosed i gave some of my 3mg B12 lozenges to some people just to see how it affects people with no obvious symptoms, a lot of them said they thought i was giving them drugs with the massive energy boost they feel.
 
I certainley wish you luck Robin! It is so frustrating when your body is doing things that it shouldnt and we have no idea what on earth it is.

I am assuming that when I e-mail my doctor that it goes to the nurses and then gets passed on, hopefully. I do sometimes have to chase them up for results sometimes.

I have watched documentaries on the USA health system and it does make me quite thankful of our health system in New Zealand. Even if the waiting lists are 6-8 months sometimes, it IS all free. But then I guess that is why we pay a fair whack of our wages on taxes.

I hope you had a lie down and a chocky biscuit (cookie) after all that blood! will you let me know how things go with your results please?

Best wishes, Janinne
 
For over 10 years i thought my doctors were replaced by cut down trees because they were so stumped.. did they tell you what they meant by inflamed blood? Because inflamed red blood cells can mean a B12 deficiency which like me caused a mountain of seemingly unrelated symptoms, ask doctor if test was done and if it's below 300 you have a problem, below 200 and you have a serious problem.
 
Yeah same in UK only a handfull of online stores sell anything over 3mg, and you right for me normal tablets have almost zero effect because antibodies in stomach stop it being absorbed, and NHS won't pay so i have to pay
 
Have been taking the B12 for six days now, and no noticable difference, however I have noticed a new symptom. Do not have a clue as to how long it has been this way, but have noticed a numbness to an area above my right ankle, a patch directly above and leading in toward the middle part of the front of my foot. Very weird, the left side is fine so far (many of my symptoms happen to both sides of my body) but I will mention it to my doctor.

I was also reading a little about B12, and notice that when they sell B12 in oral form (pill or capsule) then they recommend that you take it with food. But from what I have learned there would be extreemly little to no effect at all by taking it this way, which poses the question, why on earth do they bother selling it at all??? Money I guess, which just makes me shake my head.
 
Hi neen0

It seems like you may not have any acute illness, according to test results, but that some problems are developing, which may be rather simple to halt if you take action.

I found this info ~
http://www.nlm.nih.gov/medlineplus/ency/article/003104.htm

You could have the beginnings of arthritis, and if so, most of what I wrote applies to dealing with it.

For sure, smoking definitely does not help one's body organs, bones, muscles, etc. The symptoms could be that you are in an early stage of developing liver, kidney or heart disease. Any of those can cause swelling of extremities. You may want to explore what you can do about blood inflammation, asap.
Nicotine is a major factor in causing inflammation.

Inflamamtion can affect internal organs very negatively, and may be causing arthritis and other symptoms you are having.
http://www.webmd.com/osteoarthritis/guide/arthritis-inflammation

As for the neck, shoulder, & hip pain, that can be from lack of proper stretching, muscle tone, posture and/or life stress management. I would tend to think all of those contribute. You may benefit from deep tissue massage, hot tub soaking, and possibly chiropractic care (look for one that does not do neck cracking but does light back adjustments). Since you have 'knot" that this person cannot alleviate, I suggest that you find a different person to treat it. You should have wet heat compresses, ultra sound massage, etc, to get into the tissue so it can relax. I need several weeks of this kind of treatments about twice a year due to some permanent skeletal problems I have from an accident. Without this my body locks up. But if you to have no skeletal injury, you may also get relief from learning and doing proper stretching and might try yoga classes.

Any kind of drug uses up B vitamins very quickly, which feed the nerves...you may want to supplement with B complex every day.

Muscular aching often is alleviated with taking magnesium, esp if you use a lot of dairy food or are taking calcium. That imbalance can wreak havoc with the soft tissue like muscles. Check with a health food store for info on a good balance for your calcium intake.

Let us know if you find any solutions.
 
Well injection has a noticeable effect within an hour then you crash a few hours later and can hardly move, should be more gradual with drops over few days, hopefully this is the problem then you just have to convince Doctor which isn't always easy.
 
You take the pill with food because it just goes in your stomach to boost the amount that goes through naturally, but since i can't absorb it like that it is pointless, so i take the lozenges which i hold under the tongue untill absorbed which is usually 20-30 minutes because it absorbs directly into the blood stream.
 
Thanks symbal. I will make sure the tests include the B12 test to see what my level is. I am not sure if B12 is included in the tests that are currently being run on my blood. I am not sure exactly what he means by 'inflamed blood'.
 
Are you on Birth control pills?
I had very similar symptoms while on the pill.
Many emergency room visits and doctors appointments turned up nothing.
I now believe I suffered from estrogen dominance as a result of taking BCP. Since stopping the pill I'm so much better. Estrogen dominance can also accure during pre-menopause and peri-menapause.
I hope you feel better soon.
 
Have had blood results back from Doctor this morning
They tested as follows:
Thyroid - ok
Inflammatory Marker - ok
Liver - ok
Hep B - neg
Glucose - ok
Glandular Fever - Neg (but it seems I have had it at one stage without me knowing)
Full blood count - ok
B12 - 212 (nurse says that between 93-700 is normal)

So all-in-all rather uneventful, doesnt really solve anything.

smiles
Neen0
 
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