Dizziness question

Brain and nerves
1

I'm not diagnosed with Ms, however one gp's I've seen thinks I do have it and I'm seeing a neurologist in January.

I've been dizzy, or more off balance I suppose for over a year, with it coming and going along with many other symptoms too.

To be quite honest I'm terrified. I feel like my body is dying from the inside out.

I feel dizzy even when sitting and lying down (again not dizzy spinning room, but like a pushing or pulling feeling)

Yesterday my right leg started to drag, this is the second time it's done this in three weeks. There's no pain, but muscle weakness like it's turned to goo, my right arm has been weak too today.

I thought maybe I have a spinal /neck issue, but I'm not sure that forgetting words, and the tingling on my face and head that feels cold can be attributed to neck issues.

But the tingling and numbness in my hands and arms can be either ms or my neck.

I've had costochondritis a few times too over the years.

I'm just so scared, I don't know how to cope anymore with not knowing, what if it's neither and it's a tumour!

I'm sorry I'm not coping well tonight and I can't sleep anymore, I haven't slept properly for months.

Any advice would be great, please

2

Also forgot to mention I had vision issues too last year where I struggled to focus and was going cross eyed, this has also come back.

And had tinnitus too, also come back.

Neck pain that's been so bad I can't hold my head up some days past 8pm

3

Hey Essexgirlinpain!!

Did you get an MRI of your brain?

Thats the best option.. MS shows in an MRI scan.

If this neurologist isn't giving an answer go to another one. Always get a second opinion.

Dont let them fill your head up with ideas. You make sure you tell them exactly whats happening.

This is a waiting game, sometimes you have to talk up. They will take you as a joke.

Not sure what to tell you but dont back down from what you are feeling. Even if they look at you crazy lol. Some doctors dont even go above and beyond anymore. Just keep searching. There are alot of diseases that have the same symptoms too.

There is a lot of bs you got to go through but keep going.

I went to a neurologist and he said I had MS leisures..does that mean I have it?? Will it get worse? Tell me something Sir!! Gosh! «« I said to myself.

On a serious note, I have been feeling weak. Sometimes I get up to go to the bathroom and I have to speed walk back to bed because my legs feel like giving out or one time I couldn't lift my god daughter, my left arm felt soo weak.

There are times I cant sleep the pain in my body doesn't let me. I get so numb I have to ask for massages or even shake my legs just to see if there is blood flowing. There are days I cant feel my fingers.

I suspect that its lime disease because I feel weakness on the left side of my body more than anything but I do feel weakness all over.

MS hits people diffrently. In my case I'll have blurred vision, tingling/numbness/stinging/pain in my hands/legs/feet its horrible! Dizziness happens when I stand up for too long. I'll sometimes forget the simplest thing like words or just basic things I usually know. My neck MRI came back fine but my brain shows MS suspicion.

I honestly can't think of anything to tell you im finding out about myself. I'm confused stressed, anxious to find out exactly whats wrong. It'll probably take months or years to find an answer.

Make sure you take someone to your appointments just so they can point out things you cant remember or just so they can figure it out too.

God bless. :-)

4

Hey Essexgirlinpain!!

Did you get an MRI of your brain?

Thats the best option.. MS shows in an MRI scan.

If this neurologist isn't giving an answer go to another one. Always get a second opinion.

Dont let them fill your head up with ideas. You make sure you tell them exactly whats happening.

This is a waiting game, sometimes you have to talk up. They will take you as a joke.

Not sure what to tell you but dont back down from what you are feeling. Even if they look at you crazy lol. Some doctors dont even go above and beyond anymore. Just keep searching. There are alot of diseases that have the same symptoms too.

There is a lot of bs you got to go through but keep going.

I went to a neurologist and he said I had MS leisures..does that mean I have it?? Will it get worse? Tell me something Sir!! Gosh! «« I said to myself.

On a serious note, I have been feeling weak. Sometimes I get up to go to the bathroom and I have to speed walk back to bed because my legs feel like giving out or one time I couldn't lift my god daughter, my left arm felt soo weak.

There are times I cant sleep the pain in my body doesn't let me. I get so numb I have to ask for massages or even shake my legs just to see if there is blood flowing. There are days I cant feel my fingers.

I suspect that its lime disease because I feel weakness on the left side of my body more than anything but I do feel weakness all over.

MS hits people diffrently. In my case I'll have blurred vision, tingling/numbness/stinging/pain in my hands/legs/feet its horrible! Dizziness happens when I stand up for too long. I'll sometimes forget the simplest thing like words or just basic things I usually know. My neck MRI came back fine but my brain shows MS suspicion.

I honestly can't think of anything to tell you im finding out about myself. I'm confused stressed, anxious to find out exactly whats wrong. It'll probably take months or years to find an answer.

Make sure you take someone to your appointments just so they can point out things you cant remember or just so they can figure it out too.

God bless. :-)

5

Hi Essexgirl,

I'm sorry to hear about your symptoms. Unfortunately they do sound like MS symptoms.

However that doesn't mean you have MS. A lumber puncture and MRI would give you a much better diagnosis.

I was diagnosed 3 years ago. And yes it's very hard to come to terms with ( it took me 2 years). And then followed by a very conscious change in lifestyle. Exercise and diet are my remedies, though I appreciate that may not suit everyone. Hey...we're all different and react in different ways.

I thought it was the end for me but I'm very happy to say there is life after diagnosis.

Chin up and I hope all goes well for you....

6

No mri yet, I've requested one, and a radiologist requested one as he was asked to do a back xray, but said no it needs to be an mri as they're safer, but still no mri booked, gp won't do it, they've said they'll leave it up to the neurologist in January to do.

I've also had brain fog /forgetfulness too. Totally forgetting words when speaking and writing shopping lists

7

The dizziness thing, does it affect any of you despite being in the sitting or lying position?

One gp I've seen about it suggests it's high blood pressure, but I think that's bull to be honest as he's ignoring all the other symptoms, and I've been told by a different gp she thinks I have white coat syndrome with my bp as she did it a few times whilst getting me to relax and get used to the machine and it went totally normal rolleyes

8

Hi Essex girl,

the dizziness used to affect me all the time, with hindsight I probably had my first attack at 30yrs old and was diagnosed at 40yrs old. Over the years I was diagnosed with inner ear infections (dizziness), carpel tunnel syndrome (numbness) , trapped nerves (numbness)... Etc. etc. I'm sure you get the picture. I'm no hypochondriac .. This spans over a decade... To cut a long story short, I'm an expat and had a very serious attack overseas, with private medical care, I had an MRI and lumber puncture and diagnosed within 10 days. My attacks come and go, at the moment I have relapsing remitting ms... Waiting for the primary progressive to kick in 😂

Everyones symptoms are different unfortunately... And I really sympathsise with the wait that you have to see a neurologist , I assume you're in the uk, the NHS isn't the fastest service in the world with getting referrals etc. and the mental anguish whilst waiting must be awful. That stress alone is not good for a healthy person 🙁 Never mind someone suffering from ill health ....

easy for me to say but you have to try and relax a bit... If you seriously believe you have MS, then I would say try and educate yourself about the condition and actions you can take in the event of a positive diagnosis... It's not the end ... In some respects my diagnosis has given me a completely different and positive outlook on life...

 

9

I'm just still swaying between ms and cervical spondylosis at the moment, but not entirely sure that numb and tingling bits in my face and head can be cs, or the problem of forgetting words, today I've been awful with that, I keep having to ask my husband to finish my sentence, but this is something that's been getting worse the last year too.

I'd just like to be able to sleep right now, I've had two nights this week with no sleep at all because. I feel so stressed, and I know it's making all the symptoms worse. Can't even have a long hot bath or a drink to chill out as both things make me feel awful, even a water bottle last night on my sore neck made me feel ill

10

Yeah I'm familiar with forgetting words 😂 Which was very unusual for me . All of your symptoms sounds very familiar to me... However I am not in anyway a medical professional , so would hate to give you any form of 'professional' advice and preempt any formal diagnosis... In general though alcohol and or hot baths are not good for any neurological conditions and yeah the sleep less nights can be stress inducing in themselves 😭 Unfortunately if you have to rely on the NHS you will have to be patient.

i can only impart on you things that I have done that have greatly improved my condition. A healthy diet seems to be very crucial ( plenty of information on line on things to avoid), exercise ( non strenuous, low impact- swimming is my weapon of choice 😂) and as you are probably aware having a shoulder to cry on and to unload onto can be very beneficial. And I don't mean getting advice off people that have absolutely no idea of what your going through... someone who will just listen can be worth their weight in gold...

again I wish you the best of luck with everything and I'm always willing to chat if you need it 😉👍

11

Thank you, it's been helpful just to off load to be honest.

I've now registered at another gp in the hope of continuity with the same gp and not a million different diagnosis being chucked at me, and already they've booked me to discuss it all with a gp next Wednesday. Pain relief would be good right now, and also just someone to properly discuss my xray findings too as I've not even been spoken to properly about that either, just told wear and tear and no big issue. hoping to sleep tonight for a good 8-10 hours as I'm exhausted lol.

Thank you again x

12

You're more than welcome... Off loading is very important.

If you ever fancy a chat and to off load... Just PM me anytime.

13

Happily, relapsing remitting MS progresses to secondary progressive MS, rather than primary. Typically this isn't quite as aggressive as primary prog. MS. When we change from one to the other it doesn't necessarily mean that it's going to be much worse, it just means that there aren't periods of time where our symptoms aren't inactive/recovering.

14

The neurologist needs to do your 3 MRI's for MS.