offical DX ...treatments for fatigue?

[Limara]

hubby got the official DX of MS today from the Neuro which didnt come as any surprise although in a way it was better not knowing. Now we STILL have to wait for treatment now been 6 months, Neuro now has to send results to GP then another wait to get the treatment,( another 15 days) he did say he is going to suggest a couple of drugs to the GP one I think was was modnafil cant remember what the other was think it started with an "A" recomending trying that for 8 weeks then switching to blast of IV steroid if this doesnt help

can any one give me any hints and tips as to which treatment has worked for them, any nasty side effects from any treatments for fatigue? I know every one is different but any thing we can find out before going to the gp may be of help.

[debzsanderson]

hello Limara and welcome!!

 

My partner has tried Modafinal and Amantadine with some positive results although they both had side effects.Every treatments work differently on each individual so I'm afraid it will be trial and error with your doctor until you get something thats right for your hubby. Have you looked in the LDN section on here?? This is the treatment that my other half is currently on. LDN works by stopping the MS from getting worse but a lot of people on it have to get it privately like we do. Getting a dx will mean you get start to get your head around it - websites like this are a good way to get advice from people who are further down the path and can give their advice and support.

 

best wishes

 

debz (and Mark) xx

[Limara]

went to gp today even though neuro told us to wait 15 days for results to get back, before we see the gp we really hoped for something for the fatigue but really expected he would have to at least have time to contact neuro before he prescribed any treatmnt, he was very sympathetic and even appologetic that it was him that send him down the route to find out it was MS! He seems to be very positive that a lot can be done to help the MS now he has the DX so hopefully now we are actually getting somewhere!

Trying out with Amantadine, I researched the side effects for both and as hubby had a partially collapsed lung a year ago and the Modafinal looks like it can have a lot of lung related side effects I dont think that one is the way to go, mentioned this to the GP and he agreed.

I have seen a lot about the LDN now just to get some one to get him on it, we now need to be transferred back onto the nhs with the Neuro as all these tests were done under the works private health scheme now we dont even know if he will still have a job!

[Oops]

What does he do for a living? Many people can carry on working with MS even if adjustments are needed, and your husband is automatically covered by the Disability Discrimination Act ( DDA) now he has a dx.

[Michelle]

Hi there,

I am wondering if a rehab specialist would be of any help to you. I am very fortunate in that I have a specialist rehab doctor whose been helping me with fatique management. This does not include drugs like Modafinal. However, it does mean that I have to be very,very tough with myself, and say No! to hours in bed. I can't say that i'm without fatique - it's still there,but I am managing to cope a lot better by cutting down on my daylight sleeping. Rehab works for me! Well thus far

 

Regards

 

Michelle

[Limara]

He works with drainage very long hours its nothing for him to leave 7.30am and get home at midnight, at the minute hes having difficulty doing ANYTHING for longer than a hour, when this first flared up it took him an entire week just sweeping my top patio on and off which is no more than a 2 hour job with washing it down as well ( and he only swept it! )

Took his first dose of Amantadine yesterday felt a little light headed about an hour after then felt more tired than ever for the rest of the day its now 10.30am and he hasnt emerged this morning yet lol!

 

At the minute we really dont know whats available to us he went through 5 months of dxon the works private health scheme, now without being treated private the neuro seems very keen to switch him back onto NHS it seems like at the moment the neuro only advises the doctor what to do but once back on NHS the neuro will do the treating himself. He is being reffered to the MS Nurse at the NHS hospital.

[Michelle]

Hopefully the MS nurse will be able to advice him on the help available. As for the working hours your hubby keeps. My goodness! He's bound to be naturally tired as it is. With the added load of MS fatqiue,it must be a nightmare for him.

The MS fatique can take it's toll. Finding ways to manage this is a must. I think we all have different ways of dealing with this issue. However, there are general guidelines for managing fatique,which can be found on the MS Trust site.

Michelle