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Feeling low as symptoms can't be explained (sorry long)'...

(32 Posts)
MummyJemz Thu 06-Mar-14 10:38:49

It all started back in January with pains and strange sensations in my left arm/hand and a strange tingly/burning sensation in my back. Then it started in my left leg/foot and I noticed that my left side was weaker than right, especially left hand- i can't grip with it at all. Was eventually referred for an mri which was supposed to be in couple of weeks.

Then on Friday at work i felt faint/ dizzy on and off. That night my Husband noticed one of my pupils was bigger than the other and the next day I started seeing floaters in my vision and had headache too. Went to out of hours gp who admitted me to hospital.

I had lots of tests including ct, mri and lumbar puncture. Then a Neurologist came to see me, he was quite abrupt and shouted at me to try harder to squeeze my left hand/ push with my left arm etc but try as I might it just won't work. He told me my results were fine which I am so relieved about but he made me feel so stupid. He told me my arm/leg/back symptoms are unexplainable (could be viral but he doubts it) and the dizziness etc sounds like a migraine. He told me to go home and get on with life.

I am home and trying really hard but nothing has changed. The arm etc i can live with but the dizziness is debilitating. Its taken me ages to write this due to it! I feel guilty for worrying my family and for being like this. My DM and DH say its not my fault and my MIL (who was at hospital with me when neurologist came) cried with me out of frustration as she knows that I don't normally give in. But I can't keep relying on them. Just don't know how long it will take to feel normal. I've got to go back to work on Monday as I'm sure gp won't give me a doctor's note for unexplained symptoms! Not sure how I'll manage if I'm still dizzy etc.

Help fellow MNers, has anyone else been through similar? Do you think I'm crazy??

ClaraFox Thu 06-Mar-14 10:41:21

Do your symptoms fit Ménière's disease?

MummyJemz Thu 06-Mar-14 11:33:33

No they don't Clarafox but thank you for suggestion. My dizziness isn't like vertigo where the whole room seems to spin. Its more of a fuzzy/woozy feeling and when I'm walking its like being on a rocking boat!

awaywego1 Thu 06-Mar-14 12:56:22

could be labrynthitis or vestibular migraine..one of my pupils is bigger than the other and I also get tingling sensations.

coffeeinbed Thu 06-Mar-14 12:58:41

MS?

MummyJemz Thu 06-Mar-14 17:36:57

Seen an amazing eye doctor today. He reassured me that I wasn't crazy! He said it could be a type of migraine although it usually only last few days. How long do yours last awaywego1? He also said that it could be a virus. But he told me that my eye symptoms could indicate a 3rd nerve problem - its nerve that controls some eye movement and pupil. This can be irritated by a swolln vessel in brain. He said to give it 6-8 weeks and if symptoms don't change go back to eye clinic where they will do some tests on the vessels and possibly get referred for 2nd MRI and see a different neurologist for 2nd opinion. He did mention ms but I think there are normally lesions present on spine/ in brain but my scan didn't show that. MS can take a long time to diagnose though so he said can't rule it out completely.

I'm hoping it is viral and will just go away, I just need to be more patient I suppose.

MummyJemz Thu 06-Mar-14 17:44:40

Just looked at labrynthitis. May chat to gp about that as a possibility too if symptoms continue. No one has checked ears at all. Thanks so much!

Frontdoorstep Thu 06-Mar-14 18:48:54

The weakness and eye problems certainly sound consistent with ms but the dizziness less so .

poshme Thu 06-Mar-14 18:51:12

The walking on boat thing is axacrly how I described labrinthitis. It was horrible
Hope you feel better soon..

Frontdoorstep Thu 06-Mar-14 18:53:24

Neurologists do often tell people with ms to go home and get on with their lives because ms is difficult to diagnose . I'm not saying it is ms btw, I'm not a dr. However ms could clear up for a while then relapse again later, months even years later, so even is this clears up it might recur.

MummyJemz Thu 06-Mar-14 21:35:39

Thank you poshme. Do you or someone you know have ms frontdoorstep? (You don't have to discuss if you don't want to)

Thanks for all the support and suggestions mners! thanks

PJ67 Thu 06-Mar-14 22:46:02

Hi. I've been feeling really unwell for the past few weeks after a fall that left me with a wiplash type injury. I've had burning pain down my back and a numb feeling in my thumb as well as a constant headache and a really spaced out feeling. I have also been really fatigued. I've been to an osteopath and been putting ice packs on my neck/ back and feeling a bit better. Is there any chance it could be a mechanical problem with your back and neck?

MummyJemz Fri 07-Mar-14 08:43:25

No, had no fall or injury and pain and other symptoms don't happen with movement or ease if I rest so don't think its mechanical. But thanks for suggestion!

My aunt has shown me some simple exercises to do in case its labrynthitis that 'reset' the fluid in the inner ear. Will give anything a try!

CeliaFate Fri 07-Mar-14 10:13:49

I posted before reading this. I have vestibular migraine and have had medication to stop the dizziness. I'm going to the gp to ask for stronger/different medication as this attack isn't going away and has lasted on and off for 4 weeks.
Do your symptoms match those in the link?

MummyJemz Fri 07-Mar-14 12:02:15

It could be. Think I need to go back to my gp armed with all this info and see what he can do for me. Even if this is viral he might be able to give me some medication to help with symptoms. I'm going to need a sick note for work too if Iam still this dizzy on Monday, just hope he'll give me one and not tell me to 'geton with it' like neurologist did! My preferred gp is away in Africa and the other one doesn't have the best bedside manner ( very similar to the neurologist actually, or maybe I am too sensitive :-/ ) so we'll see...

duchesse Fri 07-Mar-14 12:15:53

Do you live in an area with deer and deer ticks? Have you been tested for Lyme disease? Growing problem in the UK yet many doctors don't recognise it or know much about it.

MummyJemz Fri 07-Mar-14 12:48:00

I don't know if I've been tested for Lyme... hospital never actually shared my blood results with me so Iassumed they were ok... Maybe another one to present to gp, he is going to love me:-/ Thanks for the suggestion.

MummyJemz Fri 07-Mar-14 12:51:14

Its scary how many conditions have similar symptoms!

Frontdoorstep Fri 07-Mar-14 19:16:52

Sorry I took a while to get back to you, yes I have ms, the weakness and eye problems sound like ms. The dizziness and feeling faint and pain are not something I have ever experienced but I'm not saying that rules out ms.

I had one pupil bigger than the other years before ms was diagnosed or even mentioned and certainly the floaters are classic ms, but again, I am less sure about the headache, I've never had an ms related headache.

I wondered about replying to you and mentioning ms but someone else up thread had mentioned it first so I decided to reply and i'm guessing that you've probably looked these symptoms up on google anyway. I don't intend to scare you but I'm just telling you my ms experience, but you have had other great replies and all the other things suggested sound as equally plausible as ms.

Lauren83 Fri 07-Mar-14 20:25:57

I had labyrinthitis and it was horrible, I lost 2 stone in 3 months I couldn't eat, constantly felt like I was on a roller coaster and like I was going to pass out x

Hollygolightlyandcat Fri 07-Mar-14 20:34:42

There is a type of migraine called migraine associated vertigo MAV which causes horrendous dizziness like you describe but you don't get the type of pain normally associated with a migraine.

I have MAV. My MAV triggered functional symptoms which caused weakness in my left hand and leg as well as vision and speech problems. For the first 6 months I was worried I had MS as the symptoms were similar - until I got an MRI, which was clear.

Diet change was really key for me, but stress and environmental factors can be a trigger in all migraines. Physio can help too.

PM me if you want more info about diet triggers etc (the hospital gave me a list).

AchyFox Fri 07-Mar-14 22:55:59

It does sound like they are fobbing you off, and I wonder why ...

I would get full copies of all the scans.

Request in writing to the hospital. You are entitled to full copies of your medical records.

Do not let them fob you off with "The consultant can go through the scans with you". Get full copies.

Compare your scans with healthy via google.

Take it from there.

MummyJemz Sat 08-Mar-14 12:00:23

I am so grateful for all the information you have all given me. I've always tried not to google symptoms or self-diagnose but the eye doc I saw told me that knowledge is power and I shouldn't be afraid to suggest things or ask lots of questions. I have requested copies of the scan,have to pay but I don't mind. Its not that I don't believe the neurologist, I'm sure scan was fine but it will be good to have it in case I do feel the need for a second opinion or if I have a scan in future the two can be compared.

LadyMaryLikesCake Sat 08-Mar-14 12:21:32

Hi

I have MS and when it relapses I get very dizzy, it's like being very, very drunk, along with headaches and muscle weakness (I get burning pain and pins and needles as well, they are there a lot). I know that the symptoms differ a great deal from patient to patient and I'm not saying this is what you have, your symptoms could be from a migraine, from a trapped nerve, then there's vitamin deficiencies, and lots of people do have lesions which show on an MRI for lots of different reasons (infection, viruses etc).

MS is a pain to diagnose as people normally have to have 2 episodes before they will say 'yes'. One of the major universities is doing a trial at the moment to help to speed up the diagnosis which helps. They have noticed that the lesions caused by MS are only seen along the blood vessels in the brain and they are different to the other sorts of lesions as they show as having a slight space inside (it depends on the type of scanner used too as not all will show this). On a normal MRI scanner the lesions when a patient has MS will be random and not a mirror image on both sides.

The LP that you had really wouldn't exclude MS, they have to look for bands of some sort in the fluid which can only be done in a few specialist labs and the results can take a couple of weeks.

You're not going crazy. You're in the waiting room at the moment which is worse then knowing what's wrong because you start to doubt yourself. I was almost relieved when I was finally diagnosed because I was feeling like a hyperchondriac before. There's loads of other things that your symptoms could be though so please don't panic. I've had laberynthitis too (no idea how to spell it, sorry), and it did feel similar to a MS relapse. Vitamin D deficiency can cause headaches and muscle weakness, as can a Vitamin B12 deficiency so it could be something that's easily sorted. I'd be tempted to ask for a second opinion to be honest, the neurologist doesn't sound like a friendly chap at all sad

thanks

AchyFox Sat 08-Mar-14 13:11:10

Its not that I don't believe the neurologist, I'm sure scan was fine

I find the neurologist's behaviour a bit odd.
With the history you've given, there should be a fair amount of head-scraatching if the scans were normal, not a "bog off".

I'd take a good look at the scans.

Hope you find an explanation.

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