Forum

Progressing or not

Hello everyone,

My name is Jenny and I have MS, I was dx in 2005  now the doc that dx me said that I probably had Benign Ms and that I wouldn't be without problems but what kind he couldn't tell me.

However it turns out to be mostly cognitive with some mobility issues as well this past few months things have been getting steadily worse and I'm becoming a danger to myself and those around me according to my husband. I'm no longer allowed to cook un supervised as that's around 5 times Iv'e nearly set house on fire yikes !!! 

I had another MRI scan done here in Bulgaria in 2009 and sadly it's still there lol 

Also I seem to be getting a lot more body twitches than before some days 4 or 5 sometimes more sometimes less. I am supposed to take gabapentin and Amytryptaline and bladder tablets  but I can't get them here so I take nothing. 

So question is DO you think that my MS is progressing and if so what do I do. It's the cognitive functions that get me down the most as I feel I'm being stupid.

I am no expert but I think you should def be reviewed by an ms specialist.

I am confused re meds. Do you mean you are still in Bulgaria ? If so cant your gp there prescribe them?

 By reading back through the posts on here the cog fog..or brain farts as my kids call them are a constant bind for many of us,and it is generally finding ways round the issues that arise rather than curing them I'm afraid.

Hope today is a good day......do you still manage to work?

Pip

Jenny,

       The brain fog/bladder problems could well be helped by taking LDN - and l am sure you could get this via Emed.

lt certainly has helped me - only been taking it the last 4yrs - but its the best thing l ever did in 30yrs of SPMS .

www.ldnresearchtrust.org  My condition has certainly not progressed since starting it - and the terrible Trigeminal Neuralgia l suffered also stopped.

There are lots of testimonial on youtube about ldn.

l find l have no side-effects from it - as with all the other meds the side-effects are nearly as bad as the symptoms they are supposed to be helping with. Many pwms take ldn - just for the help it gives with getting back control of your bladder.

F.

I am confused re meds. Do you mean you are still in Bulgaria ? If so cant your gp there prescribe them

Yes Pip I stay in Bulgaria full time I have been to my doc and he says they dont have them here that they only have predosolin think thats how you spell it. For me to go to a MS Specialist its a 10 hr round trip and language here is a big problem.

So I just do without and suffer the problems but they seem to becoming bigger problems lately.

Hi, I`m really sorry to hear you are unable to get the medicines you need in Bulgaria. It sounds to me like more than benign MS. Can you have your situation reviewed?

For us in this country, it is bad enough coping with an incurable condition, but at least we can get some meds to help with the symptoms.

luv Polllx