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Beginning of a long journey

I’ve been to see my GP this week with a list of what I thought were unrelated symptoms and she wants to refer me to a neurologist but said she was concerned that it could possibly be pointing towards ms. I’m the sort of person who thinks knowledge helps you with any problem so have registered on here to see what I can learn. I know it will be. Long road to any possible diagnosis. I’d be interested in buddies who are in a similar situation. For a while I have been embarrassed and worried that people would think I was making up what was happening. I was also embarrassed by the symptoms. Now I’m worried of what’s happening. I had glandular fever as a teenager and I’ve seen that could be a factor. Had anyone had similar symptoms and it turn out to be ms. Here are the symptoms:

falling up stairs- about every week or so, this has happened 2 and 10 years ago.

Dropping things

no strength in my hands, especially my right which is constantly painful

backache- I did slip a disk last year

pins and needles from groin to toot on one side

difficulty swallowing and choking on food.

Bowel issues- when I have to go I can’t wait

Bedroom issues- now really struggle to reach irgasm

Bladder - more frequent trips to bathroom

extreme fatigue - I work shifts so get tired but at the moment I’m absolutely exhausted all the time

has anyone else had similar symptoms and any tips on managing them. Also any help on going through the diagnosis process. My gp says the wait for a consultant appointment is 4 months so she’s advising me to go private.

Thanks for reading

Hiya,

Yes unfortunately these symptoms you describe do point to perhaps a Neurological condition.

Here is account written by a doctor about his diagnosis; tests etc. Diagnosing Multiple Sclerosis he actually seems to know what he’s talking about. Be careful looking around with the aid of Dr. Google; there is many strange things in the ether.

Tend to agree with your GP. Just for your initial appointment; cost £200-300; go private but you can then go back on the NHS for any further treatment; test; drugs; otherwise will cost.

Don’t jump out the frying pan; ask on here if anyone can recommend a good Neurologist in your area.

The last thing at mo is your work; contact ‘Access to Work’ lots of help available and you do not need to be diagnosed Get support in work if you have a disability or health condition (Access to Work) - GOV.UK

Good luck

George

Hi there

Sorry to hear about your symptoms. I’m at the beginning of the process myself so can’t offer much in the way of advice, but I just thought I’d chip in as my GP also advised me to go private given the four month wait for a neuro appointment on the NHS. Within a week of booking the appointment I saw the same chap I would have seen on the NHS. I paid £250 for the appointment, a fair chunk of money but I would have gone out of my mind waiting for that long. I’m hoping to hear about my MRI appointment today.

Best of luck with it all.

Thanks for the reply and good luck with the MRI

Hi Ang

Yes, your symptoms could point to MS, or to another neurological problem. And yes, having had glandular fever is fairly common for people who develop MS (I didn’t though!)

But, keep in your mind that there are many symptoms common in MS that are also shared by other diagnoses. So it would be irresponsible of anyone on here to say it’s likely to be MS or not.

Many people do have an initial private appointment with a neurologist and then get slotted into the NHS system. I think the way to do it is to find a private neurologist who is an MS specialist who also has an NHS practice. Get your GP to refer you to that private clinic. If the neurologist takes a history from you and does a neurological examination and feels that more tests are needed in order to make any kind of diagnosis (whether it’s to rule MS in or out or if they think it could be something else entirely), they might be able to refer you to their NHS clinic for MRI etc.

Su

I’ve just had a call from my gp to say my blood tests have come back with low iron levels. I’ve looked in line and I can’t see that this would be causing the issues I’ve been having but now I’m worried it may slow down getting a diagnosis. Has anyone else had low iron related to ms type symptoms.

I have MS. I also have low iron (anemia) and pernicious anemia (essentially defective B12 production). Aren’t I the lucky one!!! Low iron can cause many symptoms such as tiredness/lethargy -so can MS and PA too. Other MS/neurological symptoms would not be duplicated by anemia.

If your GP has referred you to neurology the fact that you have an iron deficiency is not likely to stop that. Remember that the NHS is a bit like a train. If the train is running along one set of tracks (ie neurogical) it will carry on along that track until it reaches a diagnosis (either positive or negative). If your GP was concerned enough about your symptoms as a whole that they thought “neurological” as their first idea that must be the line of enquiry that needs addressing first.

If you are in contact with your GP whilst you are waiting game for a neuro appointment it would be a good idea to check whether your blood test included B12 levels - standard “full” blood tests don’t. Low B12 mimics lots of the symptoms of neurological conditions - more than low iron would. B12 deficiency is easily controlled.

Hi, I`m coming up to 20 years on my journey and still dont have a definite diagnosis! But it is a rare case that takes so long to get a title for the reason I cant walk! So dont let that throw you into hysterics of panic chuck!

Having said that, neuros dont usually get to a diagnosis in a trice! They use MRIs, Lumber punctures, EMG tests and other stuff too.

Your symptoms do seem to point towards a neurological condition, but then so many do.

I was wrongly diagnosed with PPMS for around 10 years, as I did present classically as such, but no tests proved it.

Go with the neuro`s findings and oh yes, I went private initially to jump a 10 month waiting list for a consultation. Then I switched to the NHS for tests and further appointments.

Hang in there chuck.

pollsx

Hi,

You’ve really got your act together! This forum is the top place to be for the undiagnosed. We’ve all been there and understand what it’s like in “limbo”.

You needn’t be concerned about talking about personal issues either. This is a taboo free zone.

We all empathise with your concerns about your diagnosis and everyone will hope it’s not MS. But that doesn’t mean that you can’t come in here and share your fears and experiences.

One of your first symptoms; falling up stairs, reminds me of the day, before I was diagnosed. I was carry two Full English breakfasts and tripped on the step up to our dining area. I smashed one plate, broke my glasses and my wife had to cook two more fried eggs. She laughed like a drain for ten minutes.

It’s called “foot drop”. But it’s more like “man trap”.

See you around,

John