Forum

Getting help when in limboland?

New diagnosis and before diagnosis
#1

My current situation is that I've had ME for 15 years, have just been given a vague diagnosis of Fibromyalgia and probable MS, but the neuro I'm seeing now doesn't want to do further investigation into the MS diagnosis despite my neurological symptoms and family history of MS as he feels I'm coping with the symptoms and that the treatment for fibromyalgia and MS is the same.

Whilst the medication etc is helping, I feel like I am struggling to cope with life in general.

I'm always exhausted so am struggling to cope with work, looking after the house, the horses etc

I'm struggling with physical tasks due to muscle weakness, altered sensation and balance, walking more than a couple of hundred yards and climbing stairs is really physically difficult and fatiguing.

My writing/typing is appalling as I have a tremor, I struggle with concentration and focusing on the screen due to blurred vision (I don't have ON) and am massively intolerant to noise.

My struggling with the clutch in my car too as my leg shakes when I use the clutch and I'm unable to keep the peddle down for any period of time.

We have an ocupational health nurse at work so I asume I could go and see her, what support etc is out there to make my life easier that I can actually have whilst I don't have a concrete diagnosis?


Any advice about what is available and how I can access it whilst in my current situation would be really helpful.

 

 

#2

Hi Tabitha

I am sorry you are not feeling good at the moment.

I think you need to see a different neurologist, as there are meds out there to help with MS. You really should know exactly what you are dealing with. Its your body!

I personally think you need to see your GP and get a referral to a different neuro. I would certainly not be happy with that wishy washy diagnosis!

I wish you lots of luck and good health Tabitha

Paula xx

#3

Hi Tabitha

Just wanted to echo what Paula has said, please go to your GP and ask for a new referrall to a MS Specialist, if it is indeed MS you will get the right support and help which you need.

I ended up going to the GP for a second opinion and i am so pleased I did as the new neuro is very much on the ball!

Try and be kind to yourself and take care

Good luck

Carla x

#4

 

Start claim for DLA ring 0800 882200 for the forms.  Contact DIAL  http://www.dialuk.info/ who will come around your house and help with the forms. Or Benefits and work  http://www.benefitsandwork.co.uk/  who give excellent advice.

 

 

It is extremely dangerous for you to drive with your clutch problems.  If you are awarded high rate mobility component you can get a brand new auto from motability; no clutch.

 

If you need help working contact ‘Access to Work’ http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/WorkSchemesAndProgrammes/DG_4000347  lots of help available to help.

 

George

#5

Hi George. 

Wish I had known about DIAL when I was filling out DLA forms. The forms are a nightmare and I found myself just repeating myself over and over again. Will give them a ring when I get a reject letter! Px

 

#6

I've already asked my GP for a second opinion, he says in accordance with what the newest neurologist recommended he will not be referring me back to see the neurologist or support me seeing another neurologist unless my symptoms dramatically worsen.

I live in a village so alternative GP's that I can see are not really and option, I did enquire with another practice and they said they would not take me until any treatment I have for ongoing issues has been resolved.

I guess I shouldn't complain as this GP and neurologist are at least giving me medication to help with the symptoms which is more than I've previously had (other than being on Amitripyline for nerve pain which the previous neurologist perscribed several years ago).

I am just frustrated as I feel like I cannot get help until I have a concrete diagnosis and that certain people in my life do not believe that I'm actually ill/have these symptoms.

#7

Hi again Tabitha

I think I would go to the nearest A&E Department if my GP wont help. When symptoms get bad, go there and get seen by someone neutral. Its so frustrating for you Im sure. Having symptoms, no definite diagnosis and not feeling happy with that. Thats rubbish!

Im sure the people that matter to you do believe that you are ill, and anyone else just doesnt matter!  I have found that several 'friends' have not been in touch for the past few months since I have been ill. Thats fine with me now. They are obviously not worth worrying about, and Im glad I found out now!

Anyway, good luck with it all. Sometimes it just feels like you are constantly fighting to get somewhere.

Pxx