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Don't really know what to do

Hi,

About 5 or so years ago (now 29), I began getting tingly feeling in my hands and arms, shakiness in my hands and reduced strength as well. At the time I just ignored it and put it down to everyday stuff, since then more and more things have happened. The tingling, shakiness and reduced strength has been increasing in the amounts that it happened and has been becoming painful aswell. Along with this I have been having problems with my legs and feet in the same way as well as a feeling not being able to control my legs. I have also experienced spasms in parts of my legs which are extremely painful.

I have seen my GP’s over the years with little success in finding out about what was happening. As my symptoms have grown, blurring vision, loss of strength in my legs, struggle worse when it hot, fatigue (I used to put it down to my work, but can’t explain why I am nearly passing out asleep mid afternoon or when I finish work), vertigo (this does scare me when it happens), Loss of feeling.

I had been admitted into hospital last year where they did an MRI and what I would call a very pain lumber puncture, which came back clear. The doctors didn’t know what it might be as I came via A&E and they could decide what to do. A few months later I saw a specialist who basically said that as I was ok at the time of the appointment to go away. Since then I have been back to hospital via A&E where I was told to go away because I “had” a specialist to look after me. At the time of this, it was a very upsetting experience to be told to basically F off and read up on some condition on wikipedia (no joke). After this appointment I visited my GP who helped get me an appointment at Frenchay with the Neuroscience department, who have asked me to come in when I am suffering another large episode of symptoms.

I have been suffering from all of the above symptoms, but from past experience of the medical staff. I have felt that it isnt hard enought to go to hospital. I have recently noticed that my ablility to reason decisions and my memory has got worse.

I am not sure if this is potenially leading to a form of MS or not, but I have a sort of gut feeling that it might be.

Sorry if this seems like me moaning or going on and on, but don’t really know who to talk to about this anymore with my emotions getting the better of me.

Davie

Hi Davie,

You’re not moaning mate just asking questions.

First your MRI; did this show any abnormalities; was it of both brain and spine? Obviously no one on here can diagnose you but I can say that you do seem to have some form of neurological condition.

Did you know you can purchase a copy of your MRI; ABOUT £10; always handy saves them loosing it. I would ring the hospital; contact the Neurologist or Doctors secretary and see if you can get a copy.

There are very many complaints it could be but obviously the hospital has checked for the really bad ones like Tumour and Stroke and it is not.

An LP only proves there’s something going on in your Central Nervous System (CNS) AND 5% of people with MS do not show O-Bands so this does NOT rule in or out MS.

Do not look on the internet except for information on here. Do not talk yourself into MS; there’s a long way to go yet. This will give you an idea of diagnosis http://www.mult-sclerosis.org/diagnosingms.html

Good luck

George

Hi Davie,

You have to the right place for advice and guidance.

I can relate to some of your symptoms but neuro sysmptoms can be suggestive of many different conditions, including something as simple as a Vit B deficiancy.

The diagnosis process can be lengthy, whilst the Neuros carry out their detective work.

If I read your post correctly, the Neuroscience Dept said to come in when your symptoms flare up; is it time to make that call?

Maybe speak with your GP about a referal to a Neurologist.

Keep a clear, concise list of your symptoms for the specialists.

Believe me, will all know how scary, confusing and frustrating it can be.

Come on this forum to rant or ask for advice. We know how you feel!

Take care

Clare

Hi,

Firstly thank you, the neurologist did organise blood tests to rule out conditions that way and said that from the results. They didn’t account for the symptoms I have been suffering. I do understand that diagnosing something neurological can be a lengthy process, just feel am times that I am not getting anywhere in finding out what it is. One neurologist did rule out a lot of conditions because i was feeling fine at the time of the appointment (which can’t remember the names). My last appointment that was with a different neurologist said that he didn’t want to rule out any until he could do tests on me when I am having a really bad flare up (like the one that put me in hospital).

I do feel that what is currently happening within me isn’t nearly as bad as that one. Just a long drawn out one that doesn’t seem to be causing me to alter my work/personal life. I will go in the neuroscience department as soon as it worsens.

The MRI, from what i can remember was brain and spine, and I don’t believe it showed anything, was meant to of had a CT scan before the MRI, but the doctors on the ward couldn’t make there mind up.

Thank you for getting back to me.

Davie