Foggy's "Invisible Illness" Support
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Undiagnosed and frustrated!

Hello,

I’m wondering if anyone can help, Im new here but I’ve been struggling with intermittent symptoms beginning with the flu followed by pin and needles in my leg whist in the gym in January.

Since then I’ve experienced intermittent symptoms, (a week on, 3 days off for example) the list of which is below.

My GP ordered full bloods, which were

B12 – 183 ng/L (220-770)

Folate – 6.9 ug/L (3.9 – 27)

Serum TSH – 16 mu/L (0.3 – 6.00)

Serum Free T4 – 13.7 (10 – 22)

Ferritin – 63 ug/L (13.00 – 150)

FBC

Hemo Estimation 145 g/L (118.148)

RBC – 4.62 10*912/L (3.88 – 4.99)

MCV – 90 fL 980 – 100)

MCH – 31.4pg (28 – 33)

Intrinsic Factor Antibody – Negative

Anti Gastric Parental Cell – Negative

My GP has me on every other day injections of B12 (currently on no.12) but Ive seen only intermittent improvements which only seem to last a day or so then I’m back to square one.

Two neurologists have concluded that their examinations are normal and expect the MRI scans I’m awaiting will also be normal.

I’m going out of my mind. I feel like a zombie version of myself.

I wondered if anyone has had a similar experience or could better help me understand my bloods? it would be most appreciated.

(I also take Magnesium 300ug, Folic Acid 400ug and Vit D 1000ug daily since around two weeks ago and have been celiac for 3 years)

Thank You, Leanne

Symptoms

- Tingling in toes, feet, legs (up to knee, which is new), fingers, hand and some times in forearm though not common.

-Fatigue

-Lack of concentration/focus, distracted easily by noise, unable to multi task

-Stiffness in hands and fingers, some numbness in fingers though this is new and only happened a couple of times

-Brain Fog, difficulty remembering words and spellings of things

-Anxious, feeling unable to relax, on edge, worrying and feeling out of it.

-Nausea, not accompanied by vomiting

-Jelly Legs, weakness and difficulty walking (new)

-Numbness in toes, intermittent and lasts a few minutes

-Muscle twitches

-Heart Palpitations, like your heart is beating out of your chest

-Low Mood, avoiding social situations, feeling down and easily emotional

-Dizziness, not spinning though

- Vision, trouble focusing; last a couple of minutes and passes

-Feeling cold more

-Bladder, needing to urinate more often remedied quickly and some incontinence when running at the beginning hasn't happened since

-Burning sensation in feet, hands and legs

-Headaches

-Chest Pains, sharp pains like a stitch, these seem to accompany only severe symptoms

10 Replies
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Hi 👋 I have many of those symptoms. I spent a week in hospital & was diagnosed with megaloblastic aneamia. Where your body is unable to absorb vitamin B12 so need injections of B12, folic acid & sometimes folate. Its where the red blood cells grow larger & misshaped. The white cells are reduced so lead to low immunity. My case ended up with the bone marrow being blocked by these larger cells leading to many of those symptoms. Took a while to get better but gradually with the medication improved. Its a lifelong auto immune illness but can be helped. There's a good facebook group that can help & offer advice. Might be worth a look.

I hope you get some answers x

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Thank you so much for your reply and apologies for the late response it’s been a bit of a rollercoaster week!

I’m going to see my gp on Friday and plan to ask him to refer me to a hemo who hopefully can help me shed more light on the subject! I’ll defnitley be asking about MA after hearing your story.

Thank you again, L

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I hope they can help you. Its worth asking about MA, microblastic or aplasty aneamia. Especially as they have put you on the treatment for it. All I can tell you is when I was rushed into hospital my blood count was 58! I will keep my fingers crossed for you xx

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Hi Leanne, I feel for you so much. Every symptom you have I have had but I also had tooth pain. I am under a specialist dentist you may or may not find it an interesting website. The treatment is controversial but I opted to try it and glad I did. Good luck in whatever path you choose.

dramir.com

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That "normal range" for B12 is ridiculously low. In Europe, a B12 deficiency is defined as a level below 500. In Asia, as a level below 550. (I was symptomatic at 500, and I've gotten it up to 2000 with the sublingual tablest, but it only solved one or two lesser symptoms.) Only in the U.S. is it set so low. In any case, if you're on QOD injections something should be improving by now. I also note that your TSH is very high (that is, if it really is 16 and not 1.6). A high TSH means low thyroid. I don't see anything about them addressing that issue.

I went through several years of struggling to get a diagnosis. I was finally diagnosed last year with autonomic neuropathy, more commonly referred to as dysautonomia. It was suggested by a neurologist, but she said it had to be confirmed and treated by a cardiologist. I had gotten a complete cardiac workup in 2015, and he had said everything was normal. When I went back to him, he did then confirm it and is treating it, with marginal success. (He calls it "neurogenic orthostatic hypotension", however.)

I was interested in "Opthealth's" comment. I do have TMJ, but nobody ever said anything about it causing all those seemingly unrelated symptoms. I will have to do some reading on that.

Finally, I want to point out that those "deficiency" levels they put in lab reports are the absolute, basic, bottom level of those substances that you can be asymptomatic with, but it doesn't mean that if you are one point above deficiency that you are OK. My ferritin was 47, and my GP said that was fine (meaning it was above the minimum), but the neurologist said it was too low (meaning it was below optimum). You want everything to be optimum, but they never tell you what that is, and it is difficult to find out since nobody really agrees on it.

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I'm sorry. The short answer is, I have no answer.

Be sure you ask for 2nd opinion and ADVOCATE for yourself. You would be surprised how many doctors will simply scratch their heads, say they don't don't what is causing it and walk away...on to the next patient.

Do not settle for a GP. Demand a neuro specialist AT A WELL ACCLAIMED FACILITY.

That's what I'm doing - although my GP referred me to a local neuro - and that local neuro has referred me to a more specialized neuro at a well acclaimed regional facility (Barne's Jewish Hospital, St. Louis, Mo.) No, you do not have to be Jewish.

Ensure your health insurance will cover the specialty neuro, etc.

Wondering out loud:

I'm no doctor and my symptoms are limited to onset with some numbness in feet and lower legs - diagnosed via electro tests (forget the acronym) as Peripheral Neuropathy. Your B12 was low but I see you are now on injections.

With SO MANY other symptoms, many of which I have not seen on this blog connected to other PN sufferers, I wonder if it's some other neurological or other cause. Any spinal injuries which could cause pinched nerve, spinal stenosis, etc? Anything in the brain ?

I have new appt. with specialized neuro in June. We will see. One of my last "shots" at a diagnosis may be that, although never a smoker, I have slightly elevated co2 levels and some imaging photos of bronchi damage, apparently from 2nd hand smoke when I was young. I've had one hypoxia attack related to heat exhaustion cramps and onset of a second attack related to a simple pain in shoulder. I'm wondering (purely speculation) if I have suffered any nerve damage in extremities (feet / legs) via lack of adequate oxygenation. Who knows.

I also have spinal issues with minor compressed & bulging discs high and low.

I'll update everyone after my June special neuro appointment.

If there is anything I learn, I will share, in hopes it might help someone.

Again, I'm sorry for your suffering.

I hope you find relief.

Rory

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Hi your symptoms are very similar to many of mine.. I have Fibromyalgia. (Amongst others) ... You could try looking at the symptoms list for it, Many Gp’s know of this now so I’m sure yours would know if this could be a possibility.... Goodluck and i hope you are feeling better soon...

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Please can you confirm the result for the TSH - is it 16 or 1.6 ??

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My apologies it was 1.6 it has no risen to 2.0 in my latest bloods, not sure if this makes a difference? The bloods were taken a month apart and my T4 has also risen to 14.8pmol/L

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I have fibromyalgia and this sounds exactly like it! Even down to the blood tests coming back normal. Check it out and please ask your doctor if this is what’s going on.

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