Hi I have ppms diagnosed last year. Things are still pretty new with me. I keep getting flu like symptoms such as sore throat, sniffles but it never amounts to anything, is this normal for ppms sufferers? It happens every few weeks. X
Hi Hatton and welcome to our little gang…
I would say no, these are not normal symptoms for ppms.
As you probably know, we all have compromised immune systems. For many people with ppms it means that we don’t usually catch viruses… really because our immune systems are active all of the time fighting the MS which the immune system sees as a ‘foreign body’. So any virus gets whacked immediatly.
Although some people with MS do get every virus going… proving yet again that MS is different for all of us.
Sounds to me as if you are having some immune system response… but I’m not a health professional so I’m guessing. Have you an MS nurse? Might be worth contacting if you have. Or are you seeing your neuro soon?
Do you take high-dose Vitamin D3? This is now recommended for people with MS and it helps support the immune system. If you are not already taking it, let me know and I’ll tell you more.
This is a great place to come for advice, support, friendship… to rant, scream, laugh… whatever… so hope to see you again soon.
Pat x
Hi pat Thanks for your reply. I’ve not heard of the vitamin D3 thing? I only take vit C and zinc. I seem to go through waves of thinking the flus coming and then I’ll be ok for weeks. I’m going to see m doctor tmrw so I think I’ll mention it to her. Is there any special place you have to get vit D3 from? Many thanks once again. Emma xx
P.s my ms specialist said he doesn’t need to see me again as there is nothing he can do. So currently I have no specialist and no neurologist!! Emma xx
That’s a bit rotten Emma, I at least got an appointment for a years time when I got Dx. Do you have an MS nurse?
Your GP should be quite helpful so try to get to see your GP at least 
My Neuro told me to take 1000 - 2000 units of D3 each day although I undersatnd some people take far higher amounts, you need to make sure your D3 levels are checked if you take whomping doses tho as overdosing on it isn’t good either.
My surgery were great so I’m hopeful that yours will look after you too - we’re entitled to flu jabs etc. but they don’t write out an tell you! Pat told us in this thread and I was on it ASAP!!!
I’m sure you’ll get plenty of help here but I need to stop as I’m sneaking on net at lunchtime! 
Sonia x
Hi Sonia Thanks for replying. I’m seeing my doctor tmrw over something else so I’m going to mention it to her. I’ve just left a message on my ms nurses answer machine to get back to me so fingers crossed. Thanks for your help. Emma xx
Pat’s right. Vit D def helps; I’d go for the highest dosage (5,000IU, soft gel tab, once daily); you can get via amazon cheapest. I’ve never really suffered from flu like stuff for some time now, although I’ve recently started getting tired very easily. Coffee helps, although this is not ideal. I would also recommend drinking LOTS of water, c 2-3 litres a day; none of us drinks enough fluid that isn’t caffeinated (tea, coffee, fizzy drinks) or alcoholic. I’m sure it helps. Anyhow, welcome to this forum and hope you feel better soon. Pigeon.
Hi cp Thankyou for your reply. I don’t drink water just loads of coffee which I know isn’t good. I am definitely going to start drinking water from now on. I’m also going to get some of the vitamin D3 tablets. I’m at the stage I would literally try anything!! I’ve found this sight very helpful indeed. Never really tried anything like this before but will definitely use it again Many thanks Emma x
Hi Emma
You have been given some good advice, so just wanted to say welcome to our “gang”.
Pam x
Hi again Emma, yes get the Vit D3 that Pigeon recommends. Very cheap… about £9 for a year’s worth. Healthy Origins on Amazon.
I initially thought it helped my fatigue, but must have been placebo as didn’t last. However it might slow progression so well worth taking and might stop you getting sore throat etc.
Pat x
PS… even though there isn’t much they can do to help PPMS, you should see a neurologist about once a year. It’s useful for referals to other departments (ie bladder, bowels, physio), to try different drugs that might help, and to be available if any trials come along. Also if you claim benefits their letters are useful to support your claim.
Suggest you ask your GP to refer you to another neuro and just explain that you know others with PPMS who see a neuro annually (sometimes more often). They really should not just dismiss you like that.
Regarding flu jab, you can have it free at chemist as well. Just point out the ‘chronic neurological conditions’ on their list of people who can have it free.
Hope that helps,
Pat x
Yes I’m booked in for my flu jab my doctor also offers a pneumonia jab aswell. Thankyou for your help and advice. I’ve found this site very helpful. Emma xx
Thankyou everyone for your warm welcome and your advice. Don’t feel so alone anymore. Emma xx
Emma, that’s good, I think a few of us don’t know how we’d have coped without the support on here.
Sonia x
Welcome Emma. I can’t really add to advice given except to say that my Neuro wants to see me again 3 months after my diagnosis to check up on symptoms etc. That seems more appropriate following a dx of ppms.
This forum has been a godsend for me. The people are so knowledgeable, friendly and supportive. I hope you continue visiting.
Take care.
Cath xx
Welcome Emma. I can’t really add to advice given except to say that my Neuro wants to see me again 3 months after my diagnosis to check up on symptoms etc. That seems more appropriate following a dx of ppms.
This forum has been a godsend for me. The people are so knowledgeable, friendly and supportive. I hope you continue visiting.
Take care.
Cath xx
Hi Emma, Welcome, Hope you come back on here regularly…I find it a life saver. I too take Vit D…5000iu. Having a vit D blood check next week…my MS nurse told me today it’s now available from Amazon as a spray …news to me, although the capsules are very small so not a problem for me. I think it’s terrible when neuros say that they won’t see you because there’s little they can do. Pat is right you should ask your GP to be referred to another one. I’ve no idea why but some of them seem to think that as we can’t have disease modifying drugs that they cannot help us. It’s not true at all…there are several drugs which can relieve symptoms and some of them can only be prescribed initially by a neuro. Some of these meds…whilst not a cure can make life so much better. I do hope your GP listens and can sort out another consultant for you…its worth persisting…I had two neuros before the one I see now ( who is lovely) and they were awful…one if them was possibly the rudest man I’ve ever met. If GP won’t help I would speak to your MS nurse. Good luck at docs tomorrow. Nina x
Hi nina. I found your message very uplifting. I’ve always kind of given up because my doctors seem to have given up on me. I’ve not received much help or support of the medical profession at all. I feel like I’ve had my diagnosis now get on with it. I’ve got to see my gp tomorrow so I’m going to bring all these things up. I’ve never had a vitamin D blood test or anything. Makes me kind of down Many many thanks for your words of encouragement. Emma xx
Emma please don’t give up. There is still so much to carry on for. Just unlucky you got a Neuro who’s obviously no good. I never had blood tests either and just take vit D bought over the counter after listening to advice I got here. There may not be treatment for ppms but you still need a supportive Neuro as they can treat many of the symptoms making life much more comfortable.
Mine also referred me to an occupational therapist who came to the house and gave me gadgets to make life easier too, and that’s given me more independence. What really lifted my mood was finding new hobbies. I’ve taken up sewing and even just tidying up my bits and pieces helps when I’m not up to making anything. Speak to your doctor, it does make a difference.
Good luck.
Cath xx
Good luck with your GP Emma. Cath is right, don’t give up! My GP is no help at all, even if my nurse or consultant write to them asking them to prescribe something I still have to battle to get it. It is your right to have help with your symptoms…I know it’s hard to fight your own corner when you feel so ill but even if just one or two of your symptoms can be alleviated it will help a little and make your days more bearable. Let us know how you get on today and in the meantime keep your chin up! Nina x