Hi jmh740
Gosh, I remember those early days all to well... I looked up and read loads of complete rubbish on the Internet (there's loads of quackery out there for gullible people who want a instant cure!); ignore those. They just want to make a fast buck/pound. I tried extra vitamins and minerals which did diddly nothing. You do need to stay away from echinacea though as it can stimulate the immune system. I would recommend though that you and your husband have a flu jab every year from now on. My husband has one, because if he went down with flu, I'd really struggle to cope. If I go down with anything these days, it takes me a lot longer to bounce back.
As for people to talk to in a position very similar to yours, register with the MS Society (which is free btw). On there you will find a mine of reputable information. They have a forum section which is split into different groups; you can look at other groups, but the one I think you'd find particularly useful is the relatives caring for a person with ms one. You can also request information leaflets which are comprehensive, but easy to understand, for both of you to read and assimulate in your own time. They cover all aspects of ms; different symptoms, benefits available, etc. You can request as many as you like and read them at your own leisure. Your husband may well find it easier to read leaflets based solely on his symptoms, which is very understandable, as it can be somewhat daunting. Depression is extremely common by the way and it's estimated that 60% of people with ms are depressed at any given time. I think it's to do with letting go of what you thought your future would be and accepting that'll change. I would say mine has changed, but surprisngly for the better. One thing I definitely hadn't anticipated!
It's worth attending any information days about new treatments that are in the pipeline, which is encouraging, plus information days about benefits. I'm sure there are benefits that you are eligible for, but don't know about. You can claim some benefits whilst still working. It helps, as I've found it's helped me purchase things to help make living my life with ms, much easier, safer and more comfortable. 😀 After all, I deserve it, lol.😂
I was initially diagnosed with the relapsing remitting form of ms, which is by far, the most common type. However, despite taking Rebif, the relapses were still rather frequent. This diagnoses was changed to the progressive relapsing variety (I don't tend to remit). I can still 'furniture' walk around the house, unaided and can usually climb the stairs. However, if I've overdone things or not been well, I se my stairlift. I've also had other minor adaptions to the house, to make it safer. It's worth contacting adult social services and they will assess your house and what needs doing. They fitted quite a few things for me, FOC, as my savings are less than £23,000. I've had an outside key fitted too, as one of my main symptoms is falling over, and when I fall, I really fall. The emergency services know exactly where the key safe is tucked very discreetly out of sight and they know the code to obtain the key. Even if someone did access the key, which they haven't done in man years, we have a burglar system too. At least then, our front door doesn't need to be smashed down😳. When I'm alone in the house, I carry a personal alarm around my neck. If I fall or something else occurs, I just press the alarm. Sometimes I can shout what the problem is, but other times, I can. Then hopefully the correct service is called. So far, so good! 😀
I'm now on a drug called Tysabri. I'm on about my 95th dose. We have 12/year, so I've been on it for quite a long time. There are a lot of old out of date stories on the Internet about PML; a very rare brain infection that can occur once in a blue moon. Whereas it used to mean severe disability/death, the neurologists have worked out how to minimise the damage so that the patient ends up with little/no additional disability. Your chances of developing it, depend on a blood test which test one's JC antibodies. I've deteriorated very little since being on this drug. My main symptom is fatigue, which for someone who used to run around at 90 mph, isn't easy to adjust to.
But yes, my number one rule upon diagnosis is to not panic. Maybe step back, and reassess your life!
All the very best. 😀
