The Undiagnosed

Hello my name is Dave and I am one of The Undiagnosed. I may be on the wrong site here as I have no idea if I could have MS or not but reading other peoples posts does make me wonder as a lot of my symptoms seem to match. I have read a lot of posts on The Undiagnosed and have a great deal of empathy for all you people. Anyway here is my story… My symptoms all started in 2006 when I started getting right sided pain just below my eye like I had an abscess. Multiple investigations by my doctor and dentist revealed nothing. Eventually I was diagnosed with cluster headaches in 2007. In 2007 I started a new career in nursing which was fine until I had to work 12.5 hour shifts, these made me very fatigued which at the time I put down to my age! In 2008 I suddenly developed RUQ pain and malaise which initially was diagnosed as gallstones due to concurrent abnormal LFT’s, anyway after a lot of investigations showing nothing abnormal my gallbladder was removed in 2009 to see if it would help my symptoms. At this time I started having right leg symptoms - tingling and weakness, the fatigue and malaise were getting worse and I was in constant pain (RUQ). Lots more investigations and nothing found. Right leg tingling turned to pain. Developed carpal tunnel syndrome in both arms and later ulnar tunnel in both arms too. Next I developed peripheral neuropathy in both lower legs and feet 2010. After this I started to develop gastrointestinal problems with bad dyspepsia, mild swallowing problems and alternating bowel habits (diarrhoea and constipation). Recently I have started having bladder problems as well as memory/cognitive problems, sex life is a disaster! My GP has said I have chronic fatigue syndrome and there is nothing physically wrong with me as all tests are negative (CT, MRI, bloods, upper and lower endoscopies). My gastro consultant at the hospital thought my symptoms warranted a neurology consult and referred me. I had my neurology appointment in May 2012 and had more bloodwork, EMG, and MRI done, the neurologist never gave me any results (which I found slightly odd as all other consultants doing tests always gave me results) but said he wants to see me in November 2012 (6 months after 1st appointment). So this is where I am now, I feel my whole body and life is falling apart with no end or diagnosis in sight, I cant work and spend most of my time housebound in pain, depressed and ill. My GP is not sympathetic and every time I see him tells me I need to stop my pain meds and subtly implies that I may have a problem with them as nobody can find anything wrong with me. How do other undiagnosed people cope?

Hi Dave, firstly, welcome to the site

What an awful time for you… very frustrating and scary.

I honestly have to say that your symptoms do sound as if they could be neurological, and are MS-like.

However, for you, all is not lost. Many many people get dismissed by neuro who says it is ‘all in the head’ or ‘not neurological’. Your neuro has NOT done this.

It is quite possible that the neuro wants to wait and see how the symptoms progress over time, which is fairly normal when they are looking at possible MS. Also you have not had the results of the most recent MRI, so it is just possible that something has shown up on it.

As I’m sure you know by now, MS is particularly difficult to diagnose as there is not one simple test. It’s a case of putting lots of bits of evidence together… your symptoms, various tests, MRI results and sometimes a lumbar puncture.

I think for now you should take heart that the neuro has not dismissed you and seeing you again in November… I know it seems like an age away but actually not that long.

Limboland is not a good place to be and it does take some people a long time to be diagnosed. But wait and see what the neuro has to say in November when you’ll hopefully get a much clearer picture of what’s going on.

In meantime, have you thought about changing GP? It’s not a difficult process and sounds as if you could do with a much more sympathetic GP who at least believes what you are saying!

As you will see from this site, IF it turns out to be MS, it is NOT the end of the world. Many many people cope with MS and there are new treatments coming along all the time.

Take care and hope you get some answers in November.

Pat x

Hi Dave, and welcome :slight_smile: Well, I reckon there’s a lot more going on than your GP thinks! Unfortunately, most GPs know squat about neurology; even more irritatingly, some of them don’t know this and instead (very convincingly!) spout utter nonsense!! I’m not convinced that what you have is MS, mainly because of the peripheral symptoms, but hopefully your neuro will have worked it out and have some answers for you in November. Fingers crossed its good news! Karen x