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Pre diagnosis, MS type smptoms, advice appreciated

Hello forum, my name is Paul and i am 47 years of age, 17 stone 5 foot 11, this post may be a little sketchy in places as my brain is a bit fuzzy today so please bare with me, i will try my best to be concise. I have added a little history that may or may not be relevant but it is here nonetheless so that a full picture of events/contributing factors can be understood.

My history;

I have suffered for over twenty years with sleep apnea and avoided a diagnosis until 2010, i did not comply with therapy straight away but have been complying now since march last year. Treatment: CPAP therapy

About 15 years ago i went to my GP, i felt as though my brain had been steadily slowing down, it was at this point that i believed that something wasnt right… over a long period of time i found it was harder to find my words, my short term memory was not what it used to be and my vision was impaired slightly, it felt as though i was looking at the world through a camera - like when you use a camcorder to take a video of a tv programme off the telly and i had some numbness in the fingers of my left hand - Treatment:: Prescribed sleeping tablets and told to change diet and lose weight.

Other diagnosed medical conditions (in the last five years)

Slightly high blood pressure - no treatment yet

Psoriasis on palms of hands - no treatment as v mild atm

Pustular psoriasis on soles of feet - no treatment as v mild atm

Small hernia around navel - wont treat because of OSD (because of risk of general anaesthetic)

Present day

I have had the fuzziness in my head now for decades it is constant but i do have periods where it is not as bad, it has slowly got worse to the point that now i feel i need to do something about it, my eyesight and my ability to construct a sentence has deteriated further, the numbness has progressed to include both arms and legs from hands and feet right up to elbows and knees, my tongue is also numb and my ability to taste is impaired… where i have numbness it feels very similar to the feeling you get when you have played in the snow and then run your hands under warm water, it isnt really numbness but more of an abnormal sensation.

I am not one who goes to the doctors - i have to be REALLY ill before i actually do anything about my health, but recently, after becoming increasingly worried i visited my GP for an emergency appointment. I told him about the fuzziness in my brain, my impaired judgement/vision and the numbness, he did some cognitive tests to rule out a stroke ( i told the receptionist i was worried about stroke to get an early appointment) and diagnosed labyrithitis, he prescribed a 5 day course of amoxil 500mg and prochlorperazine 30mg a day to help with the disorientation. i didnt feel as though i had an inner ear infection, i didnt feel it was a balance issue but more of an issue with motor skills and co-ordination.

I am able to talk and move my limbs but it is now starting to feel as though i have to make a concerted and conscious effort to do this.

It has been a month since i finshed my course of tablets from the GP, i am still the same, this is the worst i have been with these symptoms and they have been constant at this level for nearly two months now.

I have managed my health for years, i had always attributed the numbness, head fuzziness and disorientation down to the lack of oxygen in my blood due to the OSD but now that it has been successfully treated for over a year i am trying to find a reason for it.

Tonight i took the night off of work and went to A and E, i was feeling very wobbly and numb, they took a heart reading, bloods, did some cognitive tests and checked motor skills. Bloods came back normal so they have sent some more for other tests, results should take a couple of days. No sign of stroke (but i knew that anyway) was advised by the doctor in A and E to visit GP and request neurology referal.

Any advice would be appreciated, kind reagrds Paul

Managed to get in at the doctors today (surprised), booked a double appointment, blood pressure checked again and was advised that it would not cause the symptoms that i have been experiencing, GP has sent a request for an appointment with a neurologist and marked it urgent, he advised that it could take a couple of weeks before i get the appointment.

I have been trying to find the words to explain how the fuzziness in my head feels… it is like a feeling of drunkeness without the spinning sensation, it makes me feel uneasy on my feet (though i havent fallen yet) and my head feels heavy, i can imagine that taking a trip in a centrifuge like a trainee fighter pilot would leave the pilot feeling similar - thoughts and movement being more difficult.

I

Hi Paul, and welcome to the forum…

Well what a time you’re having!

Firstly, it has to be said that there are literally hundreds of conditions that present the same symptoms as MS. So seeing a neurologist is exactly the right thing to do to try and work out what’s going on.

Secondly, I do think your symptoms sound MS-like. That of course doesn’t mean it is MS but it is certainly something that the neuro will be looking at.

As you may know, there is not one single test for MS. First they will give you a physical examination to see how your muscles, reflexes, eyes etc are and to see if there are physical signs of MS. They will also ask you loads of questions about your symptoms and history (make a list… but don’t make it too long… neuro’s tend to be quite dismissive of long lists so only include your main symptoms).

Then they will send you for an MRI scan of brain, and they might do brain and spine.

They are looking for scars, or lesions as they are properly called. MS causes these lesions (nobody knows why) and then the immune system sees the lesions as a foreign body and attacks them (that I’m afraid is an extremely dumbed down version of what happens!).

Sometimes the neuro will be able to diagnose MS simply from your symptoms and the lesions showing on your brain or/and your spine.

Sometimes they are still not sure. In that case they do a lumbar puncture to see if your immune system has been active in your central nervous system which is located in your brain.

So, either from MRI results, or from MRI plus lumbar puncture results, they can dx MS or not.

It can be a bit of a long haul as each of these steps involve waiting for the appointment, having the procedure, waiting for results and then waiting to see neuro again. So patience is required!!!

In the meantime of course they might decide it is not MS and look at other possibilities.

I don’t get a sense in your post of how you’re feeling about all this… but it is only human to be scared at what this might mean for you.

Keep in mind that MS is NOT a terminal disease, that the majority of people with MS can continue to live happy and full lives, and that at the moment their is loads of research going on worldwide looking for new treatments and, for the first time in history, the possibilty if a cure.

MS affects each one of us differently, and many people can continue to work, drive, walk without problems etc etc etc.

Some of us are affected more, but life can still be good… ok different than what we planned, but good nevertheless!

This is a great place to ask question and get support… so come on here to ask anything or express your feelings. Eveyone on here knows what it’s like.

Best of luck and hope you get some definite answers soon,

Pat x

Thanks so much for your reply Pat, it is the not knowing why i feel like this that really bothers me now, not the thought of having MS or any other illness. I do not feel scared, i take life as it comes and always have, i play the cards i am dealt with no matter how good or not-so-good they are.

I have put up with feeling ‘different’ for a very long time but have always managed to just smile and carry on regardless - i am not the kind of person who goes running to the doctor unless i lose major function - hence, it has taken so long for me to do something about It.

My doctors surgery phoned me yesterday, they have arranged for me to be fitted with the blood pressure monitor on the 15th July, the appointment for the neurologist will be put off until the results come back, i am also still waitng for more blood results.

I will keep this post updated to its conclusion and will not hesitate to ask for advice if i get stuck.

Thanks again, kind regards Paul