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Probable PPMS

To cut a long story short - 3 years down the line , abnormal brain and spine scan with lesions but normal LP, nerve conduction which diagnosed carpal tunnell and also have developed underactive thyroid. I have foot drop and weakness on my right side and now have very painful muscles in right arm.  I can not lift my arm, have had xray which is normal and been given co-codamol but they made me feel weird.  The doctor seems to think it is the MS and can only offer strong painkillers.  This is really painful and I know MS affects the nerves and muscles but does anyone else have very painful muscles and is there anything we can do for this?.  I have had physio but I don't understand how they can be so painful when I haven't done anything to cause this?  Any advice appreciated, I feel the GP is not helpful and always feel a nuisance when mentioning all these symptons which I feel must be related,  4 years ago I was healthy and  ran the London Marathon.

Thankyou, Amy

MS related pain generally does not respond to pain killers. If your GP is not offering alternatives like amytrpiteline, gabapentin, baclofen I (Sp is probably wrong on all of them!) it’s time to consult with MS specialists.

Your diagnosis sounds fairly new – how did the neuro leave it with you?
Are you due to go back in a year? Were you allocated an MS nurse?
The MS nurse is a good first port of call for symptoms that are causing you problems.

You mustn’t feel like a nuisance. It often seems that way because I think Drs are genuinely frustrated at not being able to help. However I think yours is not being very productive, prescribing co-codomol, which is unlikely to help.

I hope others can post with the exact medications they get for pain so that you can be armed with some info for your GP.In fairness you might be the only MS patient your GP has ever seen so it’s a steep learning curve.

Sorry, I can’t help with the pain issue, but if you do have PPMS then ldn is worth checking out as a possible treatment. Take a look at the anecdotal information on www.ldnresearchtrust.org and see if you think it can help.

I find that a fes deals with the problem of dropped foot rather well. www.odstockmedical.com.

Hi Amy, I agree with Wendels, you should be on a drug that helps with nerve pain... not just an ordinary pain killer. So go back to GP and ask for one of the drugs for nerve pain. 

I also think you need to try and get a definite diagnosis. As it's 3 years since you had an LP, ask GP to refer you back to neuro (unless you are still seeing a neuro?) and then ask if you can have another LP. That might get you a definite dx.

Unfortunately there are not any treatments for ppms (which I am dx with), but the drugs for nerve pain can help a lot. 

Amitriptyline is an anti depressant, but in smaller doses is used for nerve pain and also all the pain, buzzing, muscle twitching, burning etc etc from MS as it sort of dampens down the central nervous system. 

Gabapentin, Pregabalin and Topomax are all epilepsy drugs but also help with MS symptoms and nerve pain. 

You might be getting 'secondary pain' in your muscles, perhaps from leaning heavily on walking stick or something but if physio didn't help it is perhaps nerve pain. 

I also think that if you can get a definite dx it will help you come to terms with have MS. It helps you to stop looking back at what you could once do and to accept that you have MS, which makes a huge difference emotionally. It's hard. I know it's hard, but it is possible to move forward and create a new life.

Hope this helps,

Pat x happy2

Hi Amy

 

I have PPMS have had it for eight years and my personally that works for me is LDN , swimming and  meditation, I found out that MS drugs made me worse and the only thing that helps is the above three, you will become an expert in your own condition but as folks say you have to go to the correct team,  doctors are good but as my own gp says you are the expert not me. Some of the drugs mentioned may help they just didn't for me if you need any more information regarding the three that I use that you can message me, it would help to get a diagnose however I had mine within three weeks of first problem took me a lot longer than that to get to grips with it, you will get loads of useful information here as we are also going through a lot of what you are experiencing.

take care

trish

Hi Amy, I can only comment on the muscle pain as this is what I have the most (burning pain in all of my muscles).  I've found that 2 paracetamol + 2 ibuprofen works when it's not too bad but the best thing I've found is Tramadol which sees it off for most of the day and works quite quickly.

Mags :-) xx