Haematologist - Neurologist??

[Ritchie1268]

Good morning all.

Hope you're all keeping well.

In my last post I mentioned the really good chat I had with my amazing nurse & how encouraging she was regarding everything to do with self injecting.

I also mentioned in that last post that she asked me what symptoms I was still experiencing. So, after telling her all about the constant aching legs, pins & needles in fingers, burning but cold tingling feet, trembling legs when walking down stairs or steps, bouts of upset stomach, Insomnia, no interest in things, irritable, fatigue, brain fog & memory loss, the endless list that makes you feel like a hypocondriac when you have B12 / Folate deficiency & Pernicious Anemia just goes on & on & on.

I mentioned to the nurse that I did tell my GP everything symptoms wise that I had just told her, but my GP just looked at me & shrugged his shoulders.

She couldn't believe he hadn't referred me to a "Haemotologist" & she would see him that day & also write to him immediately to get me a referral.

Last Friday, I get a letter through my door from the surgery stating that my GP has made an appointment for me to go see him on 19th February to "discuss referral to Neurologist"

After waffling on above as I always do! I was wondering what to expect if I am referred to one or the other or both, exactly what checks they'll do & how they will do those checks & what they check for etc.

Many thanks as always!

Ritchie

[Gambit62 Administrator]

given that you have neurological symptoms and already have a diagnosis of PA, neurologist would be a better referal than a haemo.

Really difficult to say what will happen - absolutely no guarantee that the neurologist will know anything about PA and B12 but at least they should be able to rule out other causes for the symptoms

[Ritchie1268 in reply to Gambit62]

Thank you as always Gambit62!

[Nackapan]

I had my reflexes checked. A brain mri scan. A letter to gp to get more frequent b12 injections. They also may do a spine mri. Will look for any damage or reasons for symptoms I expect . Hope you get on okay

[Ritchie1268 in reply to Nackapan]

Hi Nackapan.

Many thanks for your reply!

I had an MRI scan last month on my back. But it was purely for the degenerative disc desease I've had for years in 5 discs due to hand stacking concrete slabs for many years.

Anyway, having B12 & PA & finding out it could possibly cause nerve damage in the spinal cord if undetected (which I suspect I've had undetected B12 & PA now for years), got me thinking that my back & leg problems may not all be just down to the DDD!?

I asked the nurse in the Pain Clinic if MRI shows up nerve damage, to which she said that it wouldn't?

If MRI doesn't show nerve damage, but only shows disc damage, i.e, bulging / herniated discs etc, then what procedure would actually show damage that would be caused by a B12 deffinciey to nerves in the spinal cord??

Thanks again

Ritchie

[Nackapan in reply to Ritchie1268]

I was told different so not sure now. I'm seeing a neurologist tomorrow so will ask. If it shows on a brain mri then I don't see why it wouldn't on a spine one?

[Ritchie1268 in reply to Nackapan]

That's why I'm a little confused, (doesn't take much nowadays though) 😁

She said MRI showed "Nerve root damage" & not nerve damage.

So I'm wondering why, if it shows nerve root damage, surely it should also show actual nerve damage 🤔

[Nackapan in reply to Ritchie1268]

On my brain mri it showed damage to the myalin sheath of some nerves. Caused by b12 deficirncy. That would also show up on a spinal MRI. That has given me so many symptoms but can heal if b12 given in time. Very slow though. Also pinched nerves and prrssure on nerves from discs. Will find out more tomorrow perhaps. Got day wrong on last post!!! But have spoken to a doctor.

[Ritchie1268 in reply to Nackapan]

Thank you Nackapan.

Hope you go on ok 👍

[Nackapan in reply to Ritchie1268]

Thanks

[Nackapan in reply to Ritchie1268]

I asked neurologist. He said nerve and vessel disease shows up on mri scans

[Ritchie1268 in reply to Nackapan]

Thank you I appreciate it.

Hope you got on ok

[Pastie121 in reply to Nackapan]

Hi nackapan,please keep posting on here. I seem to be in same boat as you,but not seeing neur until the 19th March..I'm seeing go on Thursday but I'm a lot more clued up on things after reading posts on here. I'm not letting the, fob me off. I feel dreadful.. Glad your feeling a bit better. How long have uneven poorly?

[Nackapan in reply to Pastie121]

I had a bad fall in August and recovered but slow in hindsight. Fall then vertigo 1/10/18 really ill from then . B12 serum blood test 18/10 106.

[nkindia in reply to Nackapan]

B12 at 106 after injections? That can't be right.

[Nackapan in reply to nkindia]

No before injections!!!

[Nackapan in reply to Pastie121]

Let's know how you are getting on

[nkindia in reply to Nackapan]

Lab test showed my B12 was 99 pg/ml. So far I have taken 7 alternate day shots of hydroxycobalamine. I haven't observed any improvement yet. Still have unsteady gait/dizziness, tinitus, numbness in feet and lower legs, slight numbness in hands. Blurred vision.

But my appetite has gone up considerably. I wish there was a thread here where we could read about some sort of timeline of improvements/changes.

[Nackapan in reply to nkindia]

Early days. It took 3 Months to see any significant improvement in walking for me

That's the trouble there is no time line. Depends on damage, how long deficient, how our bodies repair ect ect.

My appetite increased on every other day Injections and I lost weight. Throughout this I've always needed to eat littke and often as it helPA symptoms. I've put the weight back on now. So things settle.

[nkindia in reply to Nackapan]

Did you take hydroxycobalamine injections on alternate days for 3 months or less? That kind of information will be useful to us.

[Nackapan in reply to nkindia]

I dad 6 in November 2018

Then restarted 3112.18 . Went weekly from 20th feb 2019

[Hawkshaw2609]

Hi Richie

I had an appointment with a neurologist yesterday after being referred by my GP. He asked why I was there, tested my reflexes, eye movement and walking. Then told me there was no neurological issue. I can’t say that it felt like a useful consultation and I had the impression that the consultant wondered why the GP had referred me at all. I estimate I was there for less than 5 minutes. I haven’t seen a haematologist so can’t offer any insight there.

[Ritchie1268 in reply to Hawkshaw2609]

Hi Hawkshaw2609

Many thanks for your reply.

Sounds like that was a waste of time then!

There are stories like this all the time regarding neurologists. Probably because they're uneducated in B12 deficiency, as very many professionals are!

I can hear them all saying now:

"It's only a vitamin, how could it possibly cause so many problems" 🙄

[Nanc72 in reply to Ritchie1268]

I see a neurologist for Boxtox injections due to debilitating migraines (which now I know are probably from my new PA diagnoses) when I hadn’t gotten my lab results from my GP, she was able to look them up as it’s the same system. My MMA and Homocysteine levels were elevated and she said, “ yes, but they are still functional!” Not even specialists seem to know about this. I see a hematologist on Friday and I hope it goes better. I haven’t received any treatment yet and I am a wreck this Dr is going to dismiss me as well.

[Ritchie1268 in reply to Nanc72]

My Dr wants me to see a neurologist, where as the nurse said I should see a Haemotologist, so I'll just see how it goes.

I suffered from terrible migraines for years that would make me physically sick that I put down to stress. Then I had the painless, silent aura ones that just messed my vision up for 20 minutes with loads of shimmering lights.

Since getting regular B12 injections though I've not experienced either.

Good luck with the Haemotologist.

[Nanc72 in reply to Ritchie1268]

I am able to get in tomorrow. The next hurdle is I bet they will only want to treat me once a month. Do you mind me asking what type of injections you are getting and are you doing them or is the Dr doing them?

[Ritchie1268 in reply to Nanc72]

I'm still getting 3 monthly Hydroxocobalamin at my Dr's (for now).

But after my symptoms were returning after 3 days I took the plunge & started to self inject.

I did every other day for 2 weeks & felt loads better so I started doing once per week, but symptoms returned again.

Now I've just settled on every other day & gone from very close to passing out, to now (almost!) Second nature.

[Nanc72 in reply to Ritchie1268]

Are you using the same to self inject? Hydroxocobolomine I mean? I think I may have to do the same. The Dr’s offices here in the US only have the cyclocabolamine. I am understanding that maybe that type isn’t the best.

[Ritchie1268 in reply to Nanc72]

Yes I am using the same Hydroxocobalamin as it's what the NHS use over here.

If you look on this forum there are plenty of posts about the different types, but I just ordered the Hydroxocobalamin as it's what I was getting from my Dr & if I remember right, stays in your system a little longer?

I used to have a fear of needles to the point where I would almost pass out just watching someone being injected.

The first time took me a big Jack Daniel's & 2 hours sweating & shaking!

If it wasn't for the help from the amazing people on here on where to buy from, how & where to inject, I would still be suffering.

Hope your appointment goes well tomorrow.

[Nanc72 in reply to Ritchie1268]

Thank you for all your information. I did find some places to purchase also from the people on here. It’s such a great resource. I hope it goes well also. My biggest wish was that the medical community knew a 1/4 of the people on here!! It’s so sad they seem to know nothing.

[Ritchie1268 in reply to Nanc72]

You're very welcome.

It is really sad you're right.

There was a news article printed a while ago in UK that caused uproar, where the "still" current health minister here said that we need to eat plenty of broccoli to prevent a B12 deficiency!! With a clueless idiot like that, there's no wonder we struggle to get dr's in the UK to listen to us.

Hopefully with the tireless work Martyn Hooper is continually doing to educate these so called professionals, it will start to get easier instead of banging our heads against a brick wall.

There is a conference all about PA & B12 soon in UK that hopefully many of the medical profession will attend so they can be educated by Martyn & others.

To be fair my GP has been really good & actually asked me on Friday how my self injecting was going! Perhaps my nurse had a chat to him about it as she knew more than him about it, (she said she did a course on it while training) & said the laws regarding B12 injections & getting them as we need them in this country were ridiculous.

I'm expecting my 3 monthly injections to stop soon now he knows I'm doing it myself just to save money, but as long as I can still buy the B12 ampoules I'm not bothered to be honest

[Nanc72 in reply to Ritchie1268]

WOW, broccoli really? The fact that it’s such an inexpensive treatment is what boggles my mind. They want to give us depression meds, send us to Rheumatology for chronic fatigue (which consists of depression meds for treatment). I just don’t get it? I am glad you are on the right path. I hope that for everyone some day. Education is the key and what you all are doing in the UK is amazing.

[Ritchie1268]

Yes Broccoli!!!

I know it's hilarious isn't it, or it would be if it wasn't so serious!!

There are loads of posts on here that show that a lot of dr's here in UK are stopping injections once levels have risen again, which they obviously will once treatment started. It was when I first joined here that I learned that it doesn't matter what your levels are at once diagnosed, yet when I asked my Dr to have more regular than 3 months after keeping a diary & symptoms returning after only 2 days, he agreed as long as my levels were low, even making me an appointment to have my levels checked 20 minutes after having my B12 shot with the same nurse.

A whole lot of dr's even though I was told having PA I'd have to have injections the rest of my life, still cancel patients injections.

Mine haven't been cancelled as of yet.

I don't think some Dr's realise that injections for those with PA are for life & not just for Xmas!

I was on different types of antidepressants for ages till I refused to take them as they did nothing, now my mood is so much better.

Have you heard of Sally Pacholok in the states who is constantly battling to educate the medical profession?