So, just got back from seeing the neurologist. I was worried he’d be dismissive but he listened to any concerns and answered them as best he could. I didn’t go in guns blazing nor mention what I thought, I just offered up answers to his questions - mainly symptoms. He completed his reflect tests and said he doesn’t suspect anything sinister, that it sounds like Fibromyalgia and to help with the pains and stress incontinence I’ve been prescribed Duloxetine. Anyone else had that? Anyhow, he’s referring me for a scan to rule out anything else but doesn’t expect anything to show. Hubby told him that our GP had mentioned MS but he hadn’t mentioned it and is that then ruled out. He said he doesn’t suspect it but if anything shows he’ll call me back. I’m to have an MRI of the neck (as have had accidents in past) and he said part of the head, and to take the tablets for about three months and depending on scan, can slowly come back off them. Does that sound about right? Think I’m happy with all of that. Rules out anything weird in the brain, double checks the neck, and tablets should help ease the constant headaches
Don’t know your symptoms except constant headache; see if you can get a test for APS antibodies as could be http://www.hughes-syndrome.org/ very similar to MS so therefore Fibro.
Thanks G. Are you a doctor or in the medical profession? That’s the third time you’ve given me that link and to be fair I don’t think you should keep palming out links every time someone mentions a symptom. Just my opinion - not trying to be offensive. but thanks. I’ve checked the Fibro sites and they all mention pressure points and ligament pains etc… haven’t been testing on pressure points nor do I have other pains like that. I’m just very confused right now, especially on such a quick 'you sound like you have this! ’ I suppose at least I have the MRI to rule out the bad.
It sounds pretty fair to me. He doesn’t really suspect MS, but is going to have a look, just in case. If he’d said he was satisfied it was fibro, and wasn’t going to scan, I’d be a little more concerned, but I don’t think there’s much to complain about with the approach he’s taking, which seems pretty thorough.
Thanks Tina. Not complaining, I know the most important thing to rule out MS is the MRI so very happy with that. I was just a bit taken aback with the very quick, this is what I think it is, I’m scanning just to be safe but don’t expect it to show anything, and you’re discharged unless anything is seen. Even with Fibro I wasn’t expecting such a quick diagnosis. he has given that diagnosis ‘unless’ something shows on the scan. I thought there’d be other forms of blood tests and such like first to make sure nothing else but maybe my GP was thorough in what he’d already tested. Just getting all the random and useless thoughts out of my head. I’ve hovered on this site long enough to know he process and what to expect but when you actually have you’re own appointment all form of rational thinking just seems to go out the window for a while after
I’m not absolutely sure, but is a neuro qualified to diagnose fibro, anyway? I know there’s quite a lot of mystery and controversy over exactly what it is, but I thought it was more of a rheumy thing?
So I’m not sure you can have a formal diagnosis of it from a neuro - although he’s perfectly entitled to voice an opinion. Just not sure how binding it is, or whether you’ll get bounced back to Rheumatology, if nothing shows on MRI.
Hmm, not sure how that side of it works. Assuming scan is clear, he’ll send details to GP, so I suppose I’ll follow it up there and ask what’s next. I’ve been prescribed an AD which I’m not keen on taking and is for about three months, but only have a months initial supply so if I do decide to take them I can ask my GP when I go for a repeat prescription. Thanks for helping bounce thoughts. Simple things but head feels a little clearer just because of that - stupid I know
ggood please i wish you could stop posting scarey links,you give alot of people the frightners with your links,how many time have you put that link up for hughes diease,thats a horrible thing to be diagnosed,so sorry for the rant
Can I ask why you think it’s scarier than MS, anon? None of these MS lookalikes are pleasant, but given that most people here either have MS, or are worried they have it, I should think most would settle for Hughes Syndrome in a trice, as it’s so much more treatable. I personally don’t think there’s a huge epidemic of Hughes Syndrome being misdiagnosed as MS, and most people undergoing investigations will probably already have been tested for it anyway. BUT it is one of the (many) alternative diagnoses, and on a scale of scariness, I don’t think it’s that high on the list. I would have been quite relieved if I thought I had readily treatable Hughes Syndrome, instead of MS, so I don’t think it’s scary. I just don’t think it will turn out to be the answer for most people, even though the outlook for them might be better if it was. Tina
my partner died from huges disease,i watched him suffer for years,didnt mean to cause any offence by stating its a horrible disease,just to let ggood know its not a nice link to keep putting up all the time,3/4 times ive seen the link,i also read his comment about lumber puncture and the headache from hell,that was enogh to scare the hell out of people and i do know that it did scare people of a lp as ive spoke to a few in private messages
I personally don’t understand how you were diagnosed with Fibro by a neurologist. It is a rheumatologists department 110%. Not to cause fear but I was wrongly diagnosed with Fibro and only had a few back aches and before that I had a full MRI and a long suite of bloodtests. In order to rule out MS it has to be a brain and spinal chord MRI so as long as that happens and you get the all clear you should at least know it is not MS. Fibro is a very slippery subject for it is not know exactly what it is and a lot of GP’s think it is a pigeon hole to put all those unexplainable cases into unfortunately. If it is Fibro physiotherapy, acupuncture, exercise and CBT help.
I hope you get the answers you need.
I’m not sure sjohnsc. When I saw my orthopaedic consultant today, she nodded at what the neurologist had said, told me they were just ruling out other stuff out of precaution with the MRI, and that as long as that was clear, I’d then be given pain management drugs. I told her id been given those, so I’m getting the impression he can diagnose it. Although I haven’t got widespread pain as such (some nerve pain in the arms to hand or numbing and tingling, plus back into leg but orthopaedic said it seems like a protruding disc, and bad very long lasting headaches - at one point my lower leg went completely numb for a few days) and my spasms aren’t painful either, just constant movement feeling. Don’t get me wrong, I’d rather have Fibro over other things, I just want a thorough check to rule out other causes first as what I’m reading as the ‘main’ symptoms doesn’t seem to fit. But then they’re the experts and understand this stuff and it’s difficult matching things; appreciate it’s not also testable. I’ll definitely speak with my GP once I’ve got the scan out of the way. Suppose I was after something that was more concrete, giving evidence rather than fitting into a slot. That’s life. I’m relaxing more with that idea now so just voicing thoughts, whether meaningless or not
Hi JsMasquerade… try not too over worry, which I know can be difficult. The neurologist will have an understanding of fibro simply becuase of his wider training as a medic, hence he can suggest that you my have it. A true diagnosis is made by the rhuematologist as already has been said and they should do a physical assessment, I know I have been through the process. I think it is good that he is sending you for a scan. Depending on the outcome you can always asked to be referred to get a definite diagnosis of fibro. Please don’t underestimate fibro it can be a disabilitating illness and can present very much like ms. I am caught between too camps at the moment my fibro is out of control and there are many symptoms that fit the diagnosis and many that don’t. I have had mri’s in the past and they have been clear. However, I have a very supportive gp and she is sending me back to the neuro. Try not to get side-tracked with too many alternative diagnosis, tick off each consulation as you go and if you are still not right keep going back to you gp. All the best, over the coming weeks. I hope you get sorted. Lou x