neurologist appointment, worried

[Nev23]

I have an appointment to see a neurologist soon and im a bit scared.

I have had problems with my feet and weak muscles for years...i always assumed it was normal although I have also always wondered if something wasn't right.
My brother also has problems with his physical health so I think it could be genetic,although some of his issues are different to mine.

My feet are showing signs that something is wrong, when i relax my feet turn inwards and point down, it looks like a club foot...my toes are all curled and they cant straighten out, even my big toe is curled up. My gp and other professionals have agreed that there is a problem with my feet hence me getting referred to neurology.

I do have loads of other symptoms such as weak hands, fatigue, cramps,i find it hard to run. I also drop things and am very clumsy. I also cannot walk at all in high heels, i mean i can barely take a step its that bad. I mainly wear boots as i can walk a lot better.

Im really worried. I keep hoping that maybe i am being a hypocondriac and imaging all these symptoms but then again i have always felt like something was wrong.

My problem may be a genetic type of neuropathy or it could be dyspraxia...., my brother has been diagnosed with dyspraxia and joint hypermobility, although my symptoms don't seem to fit with this so im very confused... Im concerned it is something i have passed on to my daughter. I have had a lot of stress recently and pnd and i will be very upset if i find out i have something genetic...i will feel so guilty.

 

[starlight2801]

I know it's easier said than done but try not to worry until you've seen the neurologist.
It's really important you get checked out as your symptoms could be signs of physical illness but equally all of these symptoms could be down to anxiety and/or depression so I know it's hard but don't assume the worst.
I suffer from health anxiety and find that the more I focus on a symptom the worse it gets. Fingers crossed everything is ok and you feel better soon x

 

[Nev23]

Hiya. Thanku. I wish you were right and I wish it was anxiety but now I know it was not in my head...

I have seen a neurologist who has concluded that I absolutely do have a neurological condition. I am very shocked, although at the back of my mind I kind of knew something was wrong and have felt it for years. He said im deff not a hypocondriac, in fact I probably should have got it checked out before and listened to my body more.. I had abnormal results and they have found spassticity, which is why I felt like my feet are turning into club feet. They have also found that it is starting in my hands, which is what I suspected to be honest. He mentioned sumthing about ataxia...he said this seems to be a problem coming from my brain and spinal cord and not a nerve thing, whatever that means. Basically all my suspicions were correct, all my symptoms are related. They took blood work straight away to test for various diseases, they think it could be genetic.. I've been told its likely to progress slowly over the years. Im okay with this but im just worried about the genetic element.
Im praying I have not passed something on to my daughter....she is everything to me...she isn't showing signs just now thank god but then again I never showed obvious signs at her age. I need to know so I know what we may have to deal with in the future, although ive been told that it may be hard to find the gene that is responsible so it could take ages.

 

[Nev23]

Oh god im trying hard not to worry....we have realised that my cousin, who has been diagnosed with primary progressive MS, has very similar symptoms to me....ms can run in familys apparently so my family think that Primary Progressive MS could be a possibility, it is just speculation but at the same point it seems most likely..they are sending me for a brain scan anyway if these blood tests come back negative. I pray I do not have to wait long for a diagnosis.
I am aware that ******* paraplegia is not common, i guess i have been really unlucky, i know it can be caused by some pretty scary conditions so im trying not to think about it.
There is also a hereditory form of ******* paraplegia which they are doing genetic tests for.....although me and my family cant make a link to hereditory ******* paraplegia...we can make the link to MS which in the progressive form can cause ******* paraplegia.

Im still so worried for my baby, it is one thing me having this condition, if she can get it too i will never forgive myself. Ever. Im trying so hard to remain calm, but i know my family are very worried too...my mum is really upset and feels terrible as she says looking back there have been subtle signs that something is wrong with me....its not her fault though.

For the last few months i have wondered why my feet feel strange during the night...like a tight sensation...i never thought to look at them but since ive found out about the *******ity i have been curious to see what my feet are doing, ive looked under the covers and sure enough, my feet are contorted terribly, they are being pulled right in, it looks awful.

 

[fidgets mammy]

Hi there, i too have aneurological condition called myasthenia gravis. it affects all the muscles in my face neck arms and legs. it causes double vision in my left eye, some days walking up stairs is a real strain and i cant carry shopping bags that are heavy as my arms give way. my left side suffers the worst. it hasnt affected my face yet and at the moment im doing fine. i am on mystinon pyridigistomine. these conditions are manageable but can be frustrating. peolpe dont really understand what it is and i find they dont take it seriously. at first i found it hard to accept that i had something wrong with me, now i just take one day at atime and thank god its not too bad. keep yr chin up and if u need a chat just msge me.

 

[Nev23]

Hi there, i too have aneurological condition called myasthenia gravis. it affects all the muscles in my face neck arms and legs. it causes double vision in my left eye, some days walking up stairs is a real strain and i cant carry shopping bags that are heavy as my arms give way. my left side suffers the worst. it hasnt affected my face yet and at the moment im doing fine. i am on mystinon pyridigistomine. these conditions are manageable but can be frustrating. peolpe dont really understand what it is and i find they dont take it seriously. at first i found it hard to accept that i had something wrong with me, now i just take one day at atime and thank god its not too bad. keep yr chin up and if u need a chat just msge me.

hi Hun, thankyou. I have come across your condition before although I dont know that much about it...its good to hear from someone who has experience of a neurological condition, although im sorry to hear that you have this.

I am finding it very hard to accept that I have something wrong with me..
Im trying not to read too much online but I know that some of the tests they are doing are for very serious conditions...i know what I have is not good, the neurologist was quite honest in saying that . His findings really suggest damage, whether is be because of an inherited condition time will tell.

He is testing me for inherited ataxia, I checked online and im shocked at how close it matches my symptoms..the thing that is upsetting me is that most of these inherited ataxias are fatal eventually. Im very scared for me and my family.

I seem to either have hereditory ******* paraplegia, primary progressive ms or a type of inherited ataxia...based on the tests they are doing.

How and when did you get diagnosed with your condition? Hope im not being too nosy x

 

[fidgets mammy]

hi, i got diagnosed just after my sons first birthday, the week before his birthday i started experiencing double visionand pain in my left eye along with shooting pains to my head, i went to docs who were qiute bla zay actually so went to the eye infirmary, i was there all day-this was 2 days before my sons birthday and i had him with me. they done all sorts of tests on my eye then eventually called me back in and yold me i had to go straight to the local hospital as a consultant was waiting for me, they said it was urgent and i needed to go asap, i panicked, burst into tears took my son home to my husband who looked very worried, then headed off, i got there and they kept me in over night, i seen many docs the next day and they said i wasnt allowed to leave until id had a ct scan and an mri scan, they basically in so many words told me they thought i may have a tumour. i couldnt believe it, i just kept thinking i cant have, im 26 and have a baby. i told them to get me one asap or id come back the next day for one, i told them that if this was the case i was not missing my sons first birthday and he neeeded me. they got me a scan that day, it came back clear! thank god, i then signed myself out but agreed to come back as an out patient. it took them ages to diagnose me with myasthenia. it started off as just the ocular version that only affects yr eyes but then spread to my muscles too. im lucky with it, i struggke in colder weather as my vitamin levels drop qiute low which affects it, but thankfully it hasnt affected my facial muscles or breathing.
when its bad i struggle to lift things, walk up stairs, sometimes lift my head, and feel completely exhausted. my hands will also give way if im holding something.
since becoming pregnant its bn good. not really affecting me. good job as im in pain with ligaments and section scar.
i tpp really struggled with "having something wrong with me", i get very frustrated that i cant take a lid offf a bottle at times, or even grip a cup. but with patience and understanding ive managed to get my head around it. people dont understand this condition, and as i look perfectly fine they find it hard that id be struggling inside.
im worried about how my twins will be affected when their born but ill already be put on steriods to strenghthen thier lungs.
To be honest its all a bit overwhelming at the minute, carrying high risk twins having a neuro condition and trying to stay positive. but im trying hard as i like to think the glass is always half full not half empty.
its not easy being diagnosed with something but make sure your honest with people about how you feel, i try too much to put on a brave face.
neuro conditions can be monitored and can be controlled. mine is. tey and stay positive and just keep thinking "you can get through this".
if ever you need a chat or even just a moan, feel free to message me, sometimes its nice just to vent yr feelings without being told"youll be fine, dont worry".
hope yr ok, sending lots of hugs yr way.

 

[NB1983]

Hiya. Thanku. I wish you were right and I wish it was anxiety but now I know it was not in my head...

he said this seems to be a problem coming from my brain and spinal cord and not a nerve thing, whatever that means.

Hiya,

Sorry to hear you are having a worrying time. I noticed that you thought primary progressive MS is a possibility and then you mentioned your Dr said it was 'not a nerve thing'.

I have (relapsing remitting) MS which is symptoms caused by nerve damage within the brain and spinal cord. Hopefully for you, it means that primary progressive MS is not what they are looking for.

How are you getting on with tests/results? When I was going through diagnosis it was a scary time so hopefully you have a good neuro!

 

[Sproglet]

I think when doctors say 'a nerve thing' they mean the peripheral (limb) nerves.