I joined the forum around 6 weeks ago and havent been dx yet. I was wondering what other members with PPMS think of my symptoms. It started with pain on my left elbow last august and spread to pain in my whole arm, shoulder, collar bone and neck. I get pins & needles in my left hand and numbness. Over the last few months ive developed pain in my legs and hips. It feels like cramp in my thighs and calves and shooting pains in my hips when walking. I also get a tight band around ny middle under my bra which goes right round to my ribs. It feels like im being squeezed. Ive had other things for years and never conected them like the ffrequent urgent need for the loo with no warning. I dont even need to have eaten anything. I also get burning in my feet and hands. Ive had a brain mri without contrast and a cervical mri which were both clear, The neurologist i saw said that until something shows on a scan i cant be diagnosed and its a case of wait & see. Im on daily meds of amitriptyline and Tramadol and due back at my gp next week as pain is getting worse. I would be grateful for any input from members.
Sorry to hear the problems you are having but I don’t think anyone could say at the moment that your symptoms are definately related to MS. Some of your symptoms are found in MS but some are also found in other conditions. I know that the waiting for diagnosis is awful, it seems to go on for ever, have you had a lumbar puncture and evoked potentials? these tests are often used together with the MRI scan. Hope your waiting isn’t too long.
No i havent had either of those. To be honest they dont seem very interested in diagnosing me anymore, i had to fight to be refered for the mri and ct scan. As i have no dx, they are saying fibrmalgia or chronic pain syndrome, which i understand are really coveralls for when they dont know. Im kind of in limboland now until something dramatic happens. The last neuro said that i have to wait until something drastic happens, like i wake up one morning and cant walk, those were her exact words!!!
I didnt mean it isnt a condition, im unwell, i meant that after speaking to people it appears to be given as a dx when the medical profession arent really sure why you have pain.
The problem is when the MRI is clear then it is usually a ‘wait and see’ situation. Many of your symptoms do sound MS-like… but there are other conditions that can cause very similar symptoms. As you know, there isn’t one single test for MS… they put a whole lot of pieces of info together to make a dx, and one of those pieces is MRI result.
I’m assuming they have done blood work? There are a few conditions that can be be detected in the blood… but I’m assuming you’ve had that done as would normally be first step.
It is possible sometimes that brain or/and spine lesions don’t show on the MRI scan. Some scanners, esp the older ones, are not good at showing lesions… also sometimes lesions ‘hide’ and do not show on the scan.
You could ask your GP for a referal to a different neuro or MS specialist (although there’s a good chance GP will say no… it now costs the GP practice money to refer). You could try going private and paying to see a neuro or MS specialist… but keep in mind that it might not lead to a dx. Or you could simply wait for a year and get another referal for scan. Believe me I know how depressing that must sound.
It is not that unusual to have MS symptoms and not be able to get a dx (as you will see on the 'waiting for dx and new dx board) but knowing that doesn’t make it easier.
The squeezing sensation you get round your middle does sound like what’s called ‘MS Hug’. I get it a lot. I’m copying and pasting a list of tips, at end of this, that will hopefully help.
Hope this helps and really hope you get some answers soon.
HUG:
It’s a spasm of the small muscles between the ribs. Here are some tips that might help:
· Much worse in heat
· Much worse when fatigued or stressed
· Don’t wear a bra (it irritates the muscles)
· Don’t wear tight clothing… the looser the better
· Avoid large meals… little and often is better
· Lie down in/on bed if you can… and lying completely flat often helps
· Take 2 Paracetamol… if you are not on other pain med’s
· Try controlling your breathing… deep in through the nose and slowly blow out of mouth… and try and relax whole body while doing it
· Stay as cool as you can but don’t have cold shower… luke warm is better
· Rest, rest, rest and then get some more rest (if at all possible)
· Gently rub the affected area. It might feel like it’s bruised… don’t worry, that’s normal
thanks for the tips Pat, im going to start trying them today, and thanks for your support. i think im just going to have to get used to playing the long game where a dx is concerned. The major thing at the moment is really learning to live with the various symptoms and get on with my life as much as possible.
That’s a great attitude Emma. Getting a dx is a great relief as you know what you’ve got… but it doesn’t change your symptoms. So yes at this stage learning to live with your symptoms and learning what makes them worse is a really good move… AND of course getting on with your life.
Just because you’re un-dx doesn’t mean you can’t come on here and ask for advice, or rant, or whatever. You are always welcome here.