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What could I do next ?

I was diagnosed Feb last year with RRMS which has since been re-diagnosed to PPMS. My symptoms when originally diagnosed were mainly balance, dizziness, fatigue, bladder and sleep issues. Now my balance, dizziness, bladder and sleep have improved about 75% but my fatigue has stayed about the same.

I`m just wondering what would be my best option moving forward. I have appointments coming up very soon with my Neurologist and my MS nurse. I will put the question to them and see if they can suggest anything.

I`m just a little confused by it all as my progression appears to be going in the opposite direction to what it should be.

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Are they absolutely convinced it’s PPMS Scudger? Only it sounds more like RR. Perhaps you should be asking the neurologist particularly whether he’s 100% certain. You could ask what it was that made the neuro change the diagnosis from RR to PP. obviously, if it is RR, then you can get DMDs.

Re the fatigue, there are drugs you can take to help, one that is easily obtainable is Amantadine. The best drug for fatigue is Modafinil, and if you can persuade your neuro to prescribe it, then I’d give it a go. But it’s not too easy to have it prescribed these days. Some nonsense to do with side effects and hearts. Many people have been taking it for years with no ill effects.

Sue

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Hi Sue thanks for your reply.

Quite sure its PPMS as Ive never had a relapse since it all started. I have two appointments next week and shall ask the questions. I know everyone is different with their symptoms but I `m beginning to have doubts about the whole MS diagnosis.

But, I have`nt a clue what it could be.

Just been looking at my appointments and Im seeing my old Neurologist next week. ![frown|23x23](https://community.mssociety.org.uk/sites/all/libraries/ckeditor/plugins/smiley/images/confused_smile.png)I didnt realise but it is Dr Richard Nicholas of Charing Cross Hospital. Although my appointment is at Windsor.

https://community.mssociety.org.uk/comment/356479#comment-356479

To be honest, after meeting him earlier this year and not rating him I changed to a another recommended Neurologist. Anyway, I will see him next week (I`ll give him another chance) and possibly talk about HSCT.

Obviously, because hes so far up his own. He doesnt care about first impressions.

Hello Scudger.

Like Sue suggests, it may help to have drugs. The beast is so personal we can’t be sure about anything.

I will fight most of my symptoms. I will box clever and find ways round my limitations.But I will never argue with fatigue. I bide my time. This is not so easy if you work or have family demand however.

Steve

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Watched a video of someone aged 22 diagnosed with RRMS. It made me question how old I was when my MS started. I’m 47 now & diagnosed with PPMS from out the blue. I’ve always had dizzy spells, as far back as I can remember.

The best advice I can offer anyone, diagnosed with MS is, change diet & exercise more. Try & avoid stress creators.

I think I’m stubborn. The folks I’ve known, have mainly let me down, so I just do everything myself. People whine about everything & anything. It’s usually linked to finances. Now, I’m told I can’t work & that creates another group of strange folks. From not knowing what MS was, to being diagnosed with PPMS & quite a few people I know, claiming they have PPMS too. Egotistical know it alls. It’s best to avoid them.

The whole PPMS experience has shown me, how odd people really are. Obsessive & manipulative. Trying to force their opinions on someone having problems. The list of illnesses I have thrown at me & talk of PiP, is ridiculous. Like life isn’t bad enough.

If people even knew what PPMS was really like, they would not wish it on themselves. It attracts the lowest of all life forms who steal whatever they can. Blaming politics, their addictions & issues on people dealing with so much already.

Get outside, forget those who drag you down & live as healthy as you can.

I’ve just painted my work room & feel like crap. The people who have an issue with anyone trying to better themselves & their situations, need mental help. The day is going to be wasting away, whilst I try & get my balance. I’m so close to being in a wheelchair for the rest of my life, it’s ridiculous. Yet, I’ll still keep trying to live as normal as I know, for as long as I can.

Stay strong & live your lives.

Terry

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