I just wanted to pass on some friendly advice to users of this site!
I have recently been diagnosed as having Multiple Sclerosis and was not vigilant enough with my symptom monitoring as I had already been diagnosed with PBC/AIH cossover syndrome. I therefore believed that my liver was the only problem.
However my fatigue became so disabling last year that I got quite snotty with my poor gastro consultant. I demanded to see everything to make sure that my liver results were fine. They were. I finally got poor husband onto the job and as I'd started getting headaches and other vague symptoms I was sent for an MRI scan. Result - you have MS and have had it for 13 years! That's a very short summary of a very long process.
Now what I will say is that the diagnosis was a relief. I now have a very definite chronic illness and although it has shocked and stunned my family - they have gone through a kind of a grieving process - we are all in all a much stronger unit.
So in summary - if you believe that you may be getting other symptoms do tell your doctor and don't leave it 13 years like me. Also BE POSITIVE! I now take one day at a time and am always really grateful for the good days.
Sam xx
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SamT
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Thanks for that information. I feel, because a lot of these symptoms are common in so many autoimmune illnesses they should test for everything. I feel like a moaner everytime I go to the doctor about the fatigue etc.
Sorry you are suffering with fatigue doublewhammy. My only experience of it so far was the year (2010) I got diagnosed with PBC. For me after starting urso and making some life changes (I was 46 at diagnose) the fatigue just vanished at some point during 2011.
Sure I get tired as more often than not I can be kept awake during the night with itching so it then runs into the next day when I start feeling tired later afternoon. It is definitely not the same as I felt when I had fatigue though, that awful drained feeling and the fact you have to really drag yourself to do things most of the time.
If you ask your doctor you may find that you have had blood tests for other auto-immune conditions. I know I have when I was checking.
Hi. Tested for thyroid but as I haven't heard anything they must be ok. So as you suggest I am going back to ask for more. I just get a bit cross because you have to jump up and down to get anything done. The Docs dont seem to be proactive. Its not a case of " ok this is clear lets do the reem of tests to get to solve it" its a drip feed of the patient going back and forward. I just dont understand why my bloods are back to normal but I am feeling worse. This fatigue is so debilitating, bone weary. I am by nature always on the go but now I am the nap queen of Northamptonshire!
I was also diagnosed at 46, no itching thankfully.
I am taking heart that your fatigue went. Thanks you message made me feel more hopeful
Funny thing is that when you mention your bloods are normal but you don't feel so, well I have found these last, I'd say 2yrs now (I think to count the first 12mths from starting urso isn't a very accurate predictor though it started bring the LFTs down) that when I've had a few months of feeling well, washed-out the bloods seems to come back better than I was expecting and then when I feel full of jubilation (ha!) they come back with a rise in them.
Thats interesting. Nothing seems logical. To me better LFTs should indicate better wellbeing. To be honest would rather have higher LFTs and feel normal than his fatigue!
Sorry to hear of your diagnosis! Can you tell me which MRI diagnosed MS. I am having some neurological workups and was wondering what the MRI can actually show. I have been trying to educate myself but I am worried that I will be sent on a lot of tests that will not show anything definitive and in a month or so I'll just be back where I started. PBC/Autoimmune Overlap with liver transplant in December of 2012
Sorry for the delay in replying - I was comatose all weekend! It was a head and shoulders MRI particularly looking for bleeding to the brain. However it clearly showed the many lesions my MS has produced. It was shown as "white matter" rather than grey. Very lay-mans version I'm afraid but hope this helps.
Sorry to read here SamT that you also have MS as well as PBC/AIH.
Sorry but had to say I did smile when I read that you have had MS 'for 13yrs'. Not being awful there, just my way of thinking is that what you never knew you had certainly hasn't been of any worry.
I sometimes think that when we know we have something we can often fail a bit. I originally started with itching in early 2010 and at the time I was fatigued but never thought anything of it due to working more than the allotted full-time week. I just thought it was all due to work demand and no holidays for 7 months (no cover was provided at my job at the time as my colleague was on sick). Had the itching vanished I'd not have even gone to see a doctor. When I finally saw the consultant early Feb 2011 after he had diagnosed PBC Dec 2010 via my GP, he said he reckoned I'd had PBC 'for a few years' but unless I'd have had the LFTs done for other reasons or had any worrying symptons, then I'd not have known.
Hi Sam. Pretty scary and shocking, thanks for sharing and what a good positive attitude you have! It sounds like you have alot of support from family too, which always makes a difference. You are in my thoughts and prayers:), cyndy
That's tough. I was also diagnosed with MS a year after PBC. It was so difficult for my family to hear but strangely I felt relieved to know that I wasnt going mad with symptoms that didnt really fit with PBC! I guess its just one day at a time and acknowledging that if you have a busy day the next day you'll need to recover. All good wishes.
I am sorry to hear of your diagnosis. Be strong, if you need a shoulder to lean on we are here for you.
Also thank you for the information you have given us. I'm sure there are many if us who have been in your position at one time to another. I do hope things go well for you in the future. Take Care.
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