Does this sound familiar? And What shall I ask the neuro?

Hello.
I’m new here and this is my first post.
I ended up here because I went to my doctor with “tingling”. It was a similar tingling to something I had in 2001 when I had been B12 deficient. Apparently I am B12 deficient again, but only just, and she said it cannot account for the symptoms I’m experiencing. She’s sent me to a neurologist, and I read in the letter “Paraesthesia” “clonus??” plus other stuff.

Well a few Google searches later, and basically I’m here.

I am to see the neurologist next week. My “symptoms” are below. Shall I mention all these to him? Seems too many and lots of them are so VAGUE! Doubt I’ll have time to go through everything, so which should I prioritise? And finally - do some of these “sound familiar”. Shall I insist on an MRI? Any other tests?

Any other advice?

Thanks so much
Sarah

I have this really annoying tingling. It began in my left heel, moved down the left side of my foot right to the toes. It has spread up my calf.
The tingling is also in both my arms, radiating down from my shoulders.
It’s very hard to describe. It is NOT pins and needles. It does not buzz. It’s more vague. It is simple incredibly irritating. I want to bang my feet and arms, in the hope it will go away. I also have a sensation which I can only describe as feeling “weak”, as if my arms and hands don’t have any strength-although they do. In all the “push me away” tests I can do all of them.

The doctor said my B12 was low (180pg/ml) (lab normal range started at 188pg/ml), she said that this was not low enough to account for symptoms.

Vit D deficiency. Mine was 25 (lab normal range 50).

I drop things.
In the beginning I just thought I was clumsy. I was never the coordinated sporty one at school! But it’s got worse. Things just slip from my hands. It’s just that bit harder to do up a zip. It’s just that little bit trickier to get coins from my purse.

When I wake up I have pins and needles sometimes. It’s in my thumb, index and middle fingers, especially on my right hand. The other day I woke up and my fingers on right hand were “locked”. There was a red dent in the middle of my palm. I spread out my fingers then pressed the dent and my fingers pulled in again.

Painful cramping in my calf muscle particularly my left, although starting on my right. It tends to happen at night and the pain wakes me up.

Exhaustion- I have a stressful life and I work hard but the exhaustion is just terrible. I can sleep all night and on waking feel I need to sleep. Mid afternoon somedays I just desperately need to sleep. There is no keeping me awake. Went shopping on Friday for an hour. The pain down my spine was unbearable. Got home and had to sleep for two hours.

Circulation and temperature-well, let’s just say I’m Goldilocks. I can’t stand it if it’s too hot, or too cold. The doctor told me I had Raynauds because my fingers go blue when get cold. Have terrible circulation. “Cold hands warm heart” was what my grandmother used to say! But can’t breath if it gets too hot.

Eyesight is fine although I have a sort of “halo” round stuff. Things sort of “glow”. Went to the optician recently and confused her a bit. She said I had astigmatisms, but in the end I did not get glasses because the corrected vision left me seeing double. With no glasses I could see one box, with one corrected eye I could see two boxes, with both eyes corrected there were three! Have had floaters since 1999.

Have terrible pain where base of neck meets top of spine, and shoulders. It’s burning and buzzing with pain!

All of this is almost an exact repeat of 2001-2002

Back in 2001 I was pregnant with our daughter. The tingling in my feet got me to the doctor who sent me to a neurologist. She examined me and gave me a load of bloods. Did NOT have any scans as I was pregnant. Only abnormal thing she discovered was B12 deficient, and she said that was normal during pregnancy. I got into the habit of taking hi-dose liquid B12 (stopped this good habit in 2009 though).
Tingling stopped but exhaustion was there. It was so bad I could not lift my arm above my head or brush my hair. I felt like a very old woman - I was 31!. As had the pins and needles sensation in my fingers I considered that maybe I had Carpal Tunnel Syndrome. Did not go to doctor, but instead went to Bowen Therapist and Nutritionist. She gave me massages, put me on a very strict diet - no caffeine, sugar, wheat, dairy. Meals every two hours for what she said was “adrenal fatigue”. Slowly I recovered.

Had various things in between - 3 miscarriages for starters, with terrible haemorrages.

And now it’s all back with a vengeance.

Any advice would be gratefully received.

Hiya Sarah and welcome,

Reading your message it does sound Neurological and then you said about your unfortunate miscarriages’.

Please read this and get your GP to do a test for APS antibodies http://www.hughes-syndrome.org/ especially the symptoms http://www.hughes-syndrome.org/symptoms.htm

Do not worry; if it is Hughes or ‘sticky blood’ it can be easily controlled.

Good luck

George

Thank you George

Wow! Some of those symptoms sound familar - migraines as a teenager, stopping in 20s and coming back in 30s for one!

I had had three healthy pregnancies, but then as I then had three miscarriages in a row I was sent for a whole series of tests. I was at St Mary’s Recurrent Miscarrige unit and they are very thorough!

They did NOT say that I had Hughes/APS, although they did say if I ever fell pregnant again I should take 150mg of Aspirin every day because - and I forget exactly what now - but that there was something wrong with the length of my clot!

I’ll call the hospital now and ask. Although not sure they’ll talk to me over the phone because of data protection.

It’s definitely worth mentioning.

Best wishes
Sarah

So dug up all the letters etc from St Mary’s.

I was tested for APS (as is everybody it would seem), but not given a positive diagnosis.

The length of clot problem was not APS it would seem.

I’ll still mention it to the neuro.

Thank you :slight_smile:

Hi darlin,

Please note none of the tests for HS are 100% posative.

Screening test for Hughes Syndrome
Anticardiolipin Antibodies (aCL)
YES

  • sometimes referred to as Antiphospholipid
  • positive in 80% of cases
  • higher levels = higher risk of thrombosis

Lupus Anticoagulant (LA)
YES

  • Positive in 30-40% of cases
  • Cannot be used if patient is on warfarin

Thank you George

I’ll be sure to flag up the miscarriages.

Is there anything else you think I sould prioritise? I am just so crushingly tired, I can barely think straight right now. I know I wont be on top form with the neuro! I always think I’m going to be confident with a doctor, but then when I get there…

Take hubby or a friend with you

At the risk of being told off I will repeat a lovely message from our resident PHD; Karen.

It’s really hard to give advice that will definitely pay off, but there are some fairly standard things that are usually good to stick to.

  • Assume that the neuro will be pressed for time. If he/she isn’t, then fine - you can add more info from memory as required, AT THE END - adding info as you go might waste valuable time!

  • Be prepared: Be able to tell the neuro your history & family history in clear, concise statements. Don’t assume that they know anything. Don’t waffle. Take it chronologically. Take it steadily; don’t rush - be methodical.

Don’t dwell on the minor things. Stress the big things. For example, “There have been a few things that have happened over the years including numbness and extensive buzzing and pins & needles in various bits of my body, but in April 2008 I went blind in my right eye for 4 weeks. Six months later…” I.e. get the minor AND the major things out there in one go. (If you spend 10 minutes talking about your left foot being tingly, then the neuro may have switched off by the time you mention optic neuritis - not the best of use of time!)

  • Don’t hand over your lists. They are for YOUR benefit. Talk through them. Give the neuro a COPY at the end, if you feel that they haven’t necessarily made thorough notes.

  • Your symptom list should not be a blow by blow, day by day account. No neuro has the time or patience for this level of detail. Make sure to get your most important symptoms in there, when they started, how bad they are/were. Group things - did you have periods when you had loads of stuff happening and other periods when you were fine?

  • Be honest. This works both ways: don’t exaggerate, but also don’t play things down.

  • Questions are personal - we all have different things we want to know. Saying that, the fact that your last MRI showed lesions is important. I’d want to know what they pointed to. How they compared versus different diagnostic criteria (do not just mention MS - some neuros do not like the fact that patients come in with a working diagnosis of their own). I’d want to know if the fact that I had had symptoms / attacks of whatever it is since the last MRI was relevant (yes it very well could be, but let them say that). I’d want to know what the next steps were. I guess I’d want to know loads of things! So having a list of questions is pretty important too - but, again, know what the priorities are. If you are going to only get time for some of them, make sure you get the biggies in.

Other people may have a few other things to add!

It’s a right pain, but it’s often not enough to just sit and answer the questions :frowning:

Good luck!

Karen x

One thing I will add ask Neuro if they have an MS Nurse you could contact. I think the only way to prove/disprove if you have HS is to suck it and see. Ask your Neuro if it is all right to take 75mg of Aspirin; I should think within one month you will know it is doing anything.

Also it perhaps would be a good idea to speak to someone at the Hughes Syndrome Foundation?

George

Hi Sarah Seeks Sunshine You have had such great advice from George but just wanted to lend my support and say Welcome to the forum. Good luck with your neuro appointment. Hope he listens well and moves you closer to a diagnosis. Teresa xx

Thanks Teresa

George - he’s running all the test for Hughes. I didn’t even have to ask him!

Thanks so much.

Sarah

Hi Sarah

The advice given to me by a neuro was to list - in brief - all the things that concern you, starting with the worst. That way, if you do not get all the way through the list, you have at least covered the stuff that matters. Like George has said, hand over a copy of your list at the end (not at the beginning).

I would start with the eyes and the tingling. Both of those together, do suggest a neurological problem. if you are getting double vision (I prefer the term “second image”), the correct name is diplopia. This is usually a problem with the muscles that focus the eyes not working all together. Usually it is easy to correct, but you may need to be firm with the optometrist to get them to really test for the extent and direction of the problem.

Please, please, please, really take on board the things that George has said - all of them.

Geoff