Do my symptoms sound familiar?

[Hyzenthlay]

Hello

 

I hope no one minds me joining and posting here. I don't have a diagnosis of MS but I have a long and tedious list of random symptoms. I feel I'm being fobbed off by my GP who seems to think I'm either a hypochondriac or depressed. I don't think I'm either. I know some of the following are normal for a 45 year old working mum, but I'm listing everything to give a full picture... 
 

Stomach issues and weight loss

Twitching muscles / nerves and jerking fingers

Sore, burning patches of skin (shoulder / armpit and thighs)

Weird numb, weak feeling in left forearm

Stiff, weak hands

Clumsiness

Blurred vision at times

Lower back pain

Random pins and needles

Poor memory and concentration

Dizziness / feeling spaced out

Exhaustion

Anxiety

Zero libido

 

I've had various tests and the only things that have come up are B12 deficiency (not pernicious anaemia), positive ANA and a hiatus hernia. GP says that none of these are likely to be causing my symptoms. I experienced a sudden earlyish menopause a few years ago but HRT hasn't helped me feel better. GP is reluctant to treat B12 as tests for PA were negative, despite me eating a good diet and taking supplements at the time. 

 

The burning skin, finger jerking and weird feeling in my arm are new symptoms over the past couple of months and are what has led me here.

 

I know nobody here can diagnose me of course. I just wonder whether my GP should be doing more. They don't seem remotely interested to be honest.

 

Thank You
H

[Stumbler]

Hi @Hyzenthlay  , it's a bit quiet round here, but you're welcome to join us.

 

I can understand why you chose to join us, as the majority of your issues are symptomatic of MS. But, these symptoms also present in various other conditions too. Diagnosis then becomes a question of eliminating the probables and investigating the possibles. We're quite complicated really!

 

Your Doctor doesn't seem that sympathetic. You need to present them with your full list of symptoms. You don't want to know what isn't causing those symptoms, but rather what IS causing them. And, if they can't answer that question, then they need to refer you to someone who can, e.g. a neurologist.

It's at this stage that you need to assert yourself. Dig your heels in and demand the referral. But, always remain polite.

 

Maintain your list of symptoms as this will be useful at any subsequent consultations.

Do keep us updated on how you get on.

 

[Hyzenthlay]

Thank you Stumbler. I'm finding it difficult to assert myself! GP seems to feel (but won't directly say) that my issues are caused by stress/anxiety/depression and menopause. I did see a neurologist right at the beginning but it was a flying visit - they just checked my basic reflexes and walking and sent meon my way. I've been referred to a menopause clinic, appointment next week, and I'm hoping they will agree that my symptoms aren't typical for menopause and will ask GP to refer me to someone else.

 

Thanks Again
H

[Marina]

Hi H

 

Did you actually have a blood test for B12 and did it show you to be deficient? If so, many of your symptoms might well be due to B12 deficiency, one of a number of conditions which can mimic MS symptoms. The only symptom I'd say is maybe not a possible MS symptom is weight loss (unless due to some medication) but can be a B12 deficiency symptom.

 

You can get B12 sublingual tablets, which work as well as injections, and it isn't only for pernicious anaemia. They're cheap and easy to get, eg: on Amazon or maybe a health shop (Solgar is a good brand), but they must be Methylcobalamin and not Cyanocobalamin. One can't really overdose on them as any excess is excreted via urine.

 

And I agree with what Stumbler said about digging your heels in!

 

Vitamin B12 | MS Trust

WWW.MSTRUST.ORG.UK

---

Other names: cobalamin, hydroxocobalamin, Cobalin-H Vitamin B12 is a water-soluble vitamin that plays an important role in the production of your red blood cells. It also helps in maintai

 

Vitamin B12 deficiency - Wikipedia

EN.WIKIPEDIA.ORG

 

Vitamin B12 or folate deficiency anaemia - Symptoms - NHS

WWW.NHS.UK

---

Read about the symptoms of vitamin B12 or folate deficiency anaemia, which usually develop gradually but can worsen if the condition goes untreated

 

(PS - you might want to also see  How to Tag/@Mention a member in topics )

 

[Stumbler]

@Hyzenthlay  , assertion is not easy when you're not used to it, Doctors and Neurologists can sometimes be arrogant and abuse their position to talk down to you.

 

You have to reflect on the fact that these medical people are public servants and you're paying their wages. You just have to keep asking why and how, rather than accept their first generic, cover-all diagnosis. Get them to justify their "diagnosis". 

 

[Hyzenthlay]

Thank youboth.

@Marina (Thanks for the tip!) Yes, my B12 has been below the reference range in my area (180-1000) for well over a year. It was 160 then 150 then 120 at 6 month intervals. GP didn't mention it until it fell to 120. I eat a diet with plenty of B12 and was also taking a decent iron and B vitamin supplement, but I tested negative for pernicious anaemia on Intrinsic Factor and Anti-Parietal Cell tests. GP gave me 5 injections of B12 over 2 weeks but now wants to leave me for at least 6 months and retest B12 to see if it's fallen again. I didn't feel any different after the injections. GP said to me that B12 deficiency is over diagnosed and over treated, and that it wouldn't be causing any of my symptoms...

 

Lots of my other FBC results are right at the very bottom or top of the normal range, but  GP says they are all normal and no action required.

[Marina]

Seems like you've done your research on B12

 

You probably know that one of the reasons B12 is given by injection or sublingually is because one can stuff oneself with things like spinach and broccoli, etc, and it won't make the slightest difference to one's B12 levels if one has pernicious anaemia, due to the intrinsic factor.

 

I was initially given B12 injections, long before my DX, not because my B12 levels were low but because my MCV levels were low, and I also had very slightly lower oesophils or basophils (I don't remember which now!). My MCV levels were on the low side for years. When I was DX'd, I asked my neuro about having B12 again and he nodded (as if in agreement) and said it wouldn't hurt. I initially had the injections, then the sublingual tablets became available. Since taking it regularly, my MCV levels returned to normal - for the first time in many years. Blood tests tend to show me as having a level of >2000 (as that's as high as a test can show). That said, I don't remember immediately feeling any benefit from it, either. Maybe it's something that gradually happens. Either way, I keep taking it as it can't hurt and it seems to keep my MCV levels within the normal range.

 

It might be an idea to do what Stumbler suggested and make a list of your symptoms, including when they started and how often you get them. Write them down in list form and give it to your GP and ask him to read it rather than talking to him about it. If you still have no luck, would you be able to change GP, as he doesn't sound very amenable!

[Marina]

@Hyzenthlay , you might find this recent article in our Latest MS News section of interest, as it's about B12 and MS:

 

 

[Hyzenthlay]

Thank you @Marina Interesting link between B vits and MS there... I'm not taking any supplements at the moment as I want any blood tests to give a true idea of my base levels. I do eat pretty well though.

I've been referred to a menopause clinic and my appointment is on Thursday. Will take my list of symptoms and see what they say - hopefully amunition to go back to GP if nothing else!

 

Thanks again for your help :)