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So Angry At This Site!

So, I came across this site, and instead of feeling relief I have to say I am angry. Angry that for the past 10 years not one Doctor has ever mentioned MS to me. Angry that after reading through the forum, ordinary people like me are able to give more advice and support to others than any Doctor I have ever met.

If you think that my anger is unfounded, have a look at some of the diagnosis I have received.

  1. Drink more water - Thanks Doc, yes I am sure a good dose of fluoride is what I need for the fatigue that has me sitting in the afternoon not able to do much more other than drool.

  2. Have less sex - Honestly, that is what a doctor recommended to me after noticing my tan. I am not sure what type of holiday she thought I was on considering I went with my parents, but apparently this would help with the recurrent bladder infections.

  3. Rare Infection - Which only strikes when no-one is looking. It doesn’t show in the bloods because it takes two weeks for an appointment and by that time it has gone. But comes back again. Must be a very intelligent virus I have that has gotten very good at hide and seek.

  4. Muscle Arthritis - After falling flat on my face when I discovered I couldn’t feel my legs. Trying to swim across my carpet like Nemo with only one arm working is relatively normal in people with muscle arthritis.

  5. Pins & Needles - Sitting/standing too long

  6. Heart palpitations/fainting - Stress/panic attacks. Nothing to do with the mini heart attack I have just found out Ive had in the past then Doc? Or the heart block I have? Is that not strange I am only 29? No? Oh ok then.

  7. Look Healthy - Having a good figure naturally and eating well means I can’t possible be ill.

  8. Diminished reflexes - “I can refer you to a Neurologist but they are pretty much pointless and won’t tell you anything”

  9. Dyslexia - I must have picked this up along with that mysterious virus. Hope it’s not catching.

  10. Muscle pain - Scoliosis

  11. Spasms - Scoliosis

  12. Lock Jaw - Scoliosis

​13. Blurred Vision - Scoliosis

​Seriously? Though what do I expect when I go in and can only see out of one eye and tell him I have an eye infection and he asks how do I know? Listen Mister, I may have brain fog but im pretty sure I know what an infection looks like.

Wow, after writing that down I feel like I complain a lot but I can assure you I really don’t. This might come as a surprise but I don’t like to visit the doctor. My blood tests always come back “fine” so as it is clearly all in my head I set about making plans to improve my health. I WILL myself better. Every night before going to bed I tell myself “tomorrow is going to be a great day”. All it takes is positive mental attitude. You would think after 10 years I would have given up by now but nope, I still do that every single night. In fact, I have gotten very good at talking to myself. I don’t think I know anyone else who gives each body part as much encouragement as I do. “Come on legs, we’ve only got to make it to the next room.”

When willpower alone doesn’t cut the mustard, I try various cures which I get very excited about, diets, exercises, supplements. Though I did see a big improvement in other areas of my health when I cut out meat, diary, gluten, wheat, processed foods, caffeine, tap water, bottled water, fizzy drinks and anything non-organic - such as better skin, none of it has been particularly useful.

So what now? I guess I have plenty of time to read into this a bit more as it will probably take me about about 6 months to pick up the phone and make another appointment. In the meantime I will continue to lie to everyone I know about my whereabouts or why a simple text message was impossible to send (Apple must owe me a fortune for the many times my phone is broke/frozen/out of signal).

At least trying to explain why I feel like a circuit board that is wired incorrectly will be a lot easier now I have some fantastic information to hand thanks to you guys. For the first time ever, I feel I am not alone in this. It took me a while to even recognise my symptoms. I blamed them on anything I could think of and told myself they would go away. They didn’t. And when I tried to explain my symptoms to others I was told “oh yeah, I get that too”. But ive since learned they don’t have a clue what I am on about.

Thanks again guys. I can now stop feeling like im crazy - well at least until I visit the doctors again :wink:

xxx

Wow Lynzi

Welcome to this lovely forum I’m not sure why you’re angry with this site! missed that bit

I hope writing everything down has helped you. Hopefully, someone will come along and discuss many of your points. I just don’t have it me anymore to get into too much discussion. Short and sweet-that’s me

Take care xx

Hi Lynzi, welcome! I read your anger at this site as a bit ‘tongue in cheek’? I hope that’s right! Maybe now might be the time to ask your GP to refer you to a neuro, I don’t think there are any GP’s that would just hazard a guess at MS, that would need a specialist consultation after collecting all the various test results.

So don’t be angry anymore get the ball rolling with your GP…& don’t bother trying to explain to others that have absolutely no knowledge of MS…they all say ‘I’ve got that too’. I have one friend that insists that any symptoms I happen mention are probably due to getting older…because she has them too! I tend to just agree, it makes life easier for her I think? Because she’ll never come to terms with what I’ve got…sigh

Carry on learning from this lovely forum & perhaps even educate your GP

Rosina x

Sorry Rosina, but that made me laugh about: “I get that too.”

That’s my mum’s favourite answer, and I have to point out out to her that she is now in her mid-seventies, but hasn’t been like it since her 40s, so there’s no parallel. I sometimes think she and my neuro between them are on a mission to convince me nothing I ever get is due to MS - you would think it’s symptomless, according to them, and that there’s no reason I wake every morning feeling worse than my mum (who doesn’t have MS, by the way).

To Lynzi:

​I really don’t understand your GP’s comments about neuros being pointless, and not telling you anything. I know some people do feel that way, because some neurological problems can be extremely difficult to diagnose. But to assume, without even trying, that a neuro would be a waste of time? They certainly can’t come up with any answers if your doctor refuses to ask the question!

Agree with Rosina that you need to try to let bygones be bygones, and concentrate on moving things forward. Dwelling on perceived past failings by your GP, and getting angry about them won’t be doing you any good - especially if it does turn out to be MS, as getting stressed and hot-under-the-collar is well-known for aggravating symptoms. So just be polite but firm, and insist that whilst you appreciate he or she was not optimistic about the possibility of a neuro being able to shed any light, you feel the time has come when you would like to try.

Your situation is not unique, by the way. In the years prior to diagnosis, I was told my problems were due to: “having one leg longer than the other”, “wearing silly shoes”, and “wear-and-tear”, amongst other daft things!

However, try not to get too fixated on the idea that it’s MS, as there are at least 100 conditions causing similar symptoms. Try to go into it with an open mind, accepting that it could be any one of them.

Tina

2 Likes

Hi, I get that you are not angry with this site, but angry at the frustration living in limbo brings.

Been there myself and in and out of a PPMS diagnosis, which was eventually quoshed in 2011.

My current diagnosis is …wait for it…

hereditary spastic paraparesis aka HSP.

HSP mimics MS quite a lot and I expect folk are still being mis-diagnosed, like I was.

Hang in there (or should that be here?) hun and stick it out.

luv Pollx

Hi Lynzi, welcome to the first day of the rest of your life, demand a neurology appointment talk about nothing else try your request over the phone via g.p reception and tell them you will ring back in 24 hrs to confirm this is being done otherwise tell them if you need an appointment to purely request this then you think its a waste of the g.P’s valuable time but hey o.k.

I was diagnosed with stress and depression and alsorts of other ailments for 10 years before I got an MRI.

I like most on here had a long journey prior to diagnosis and I certainly felt anger towards my g.p for a little while after diagnosis but its not uncommon to take so long to diagnose.

Good luck

Pauline