I think I have MS

New diagnosis and before diagnosis
1

Hi all. Didn’t know where else to turn for support/advice as I await a consult with a neuro in the next few weeks but I’m 100% convinced i have MS (or some progressive neurological disorder like Parkinson’s or ALS)

Background info - approaching age 30, diagnosed with T1 diabetes last year. History of health related anxiety, stress and burn-out. Not anxious at present - only anxious because of symptoms.

Symtpoms:

Since diagnosis of diabetes I often have night sweats (more so in the lead up to my menstrual cycle) My endocronoligst however, can find no hormonal cause for this - I reckon its neuro related.

Now in the last few months, i have developed the following; vertigo, oesphogal dysphagia, continuous twitching on tip of tongue, widespread body fasciulations, twitching fingers, occasional shaky hands, sensory issues - tingling, buzzing sensation in toes and fingers - and now most worrying of all - heavy legs at rest. they just always feel tight and stiff (spacisity?) when i am lying down, and if i have them sitting upright, i feel tremors in my thighs. Walking, running etc is fine but if stop to bend over and pick something up, i feel like they will cave (even though they dont)

I did have a head MRI in Dec 2011 (11 months now) for unrelated issues and that came back clear. But there is no time frame for lesions surely? They can develop suddenly can’t they? Also, as a diabetic I have a lot of hypoglyecemic episodes which has led me to starving my brain of glucose at dangerous levels. I’m sure this has impacted something upstairs. Also, no MRI of my spine was done. I don’t take clear MRI’s as a get out card for something like this anyhow - and in my case i have not had a comprehensive MRI of everything else (incl lumbar punctures) that could even fully rule MS out.

I feel like MS (or Parkinson’s) is the most obvious answer for my symptoms - its an auto-immune disease and i’ve already set the ball rolling with that with T1 diabetes. If my body wants to suddenly attack healthy pancreas cells at the age of 28, why can’t it turn on my brain as well? I’m at the right age and of the right gender trend to have MS. I can see no benign cause for these symptoms at all.

All bloods have come back clear for mineral deficiency - but my GP wants to do a full bone profile just to double check on Vit B levels. And basic clinical examinations have all been fine. I went to A&E and asked for EMG and the doc did not think I needed one.

I have been to various GPs in search of answers - two of them came to the cop-out conclusion of anxiety (which is not true - i don’t feel anxious and im only anxious AFTER unusual symptoms develop and at the time my symptoms had not progressed to where they are now), while the most recent GP believes my symptoms are unusual and will refer me to a neuro if my bloods are normal. I feel like i’m basically waiting for the inevitable.

I think the diabetes is another cop-out answer for these symptoms as well, although i must admit that the onset of these neuro symptoms happened soon after i became unware of having hypoglycemic episodes (basically teetering on the edge of a seizure from running low blood sugars) and started running higher sugars to get my awareness of having lows back. This was obviously a shock to my body but i dont think it explains everything. I diagnosed myself online with ALS initially - which almost caused a psychosymatic chain of events (especially tongue twitching) but everything has taken a life of its own (sensory and spacisity) that i’m unsure which awful neuro disorder to cherry pick next. Gut instinct tells me MS. Am I likely to be primary or secondary progressive MS?

2

Whoa! Slow down there Miela!

You say you aren’t anxious, but I have to tell you that your post suggests otherwise. And if you go into see a neuro in this vein, I think it’s highly likely that he/she will draw the same conclusion and won’t even bother investigating any further.

So, take a deep breath and start again, looking at this completely objectively.

T1 diabetes, diagnosed in 2011. Since then, regular night sweats.

MRI scan in Dec 2011. Clear.

3 months ago, new symptoms affecting many parts of the body, including vertigo, fasciculations, paresthesia and “heavy legs”.

Basic clinical exams normal.

I’m not a neuro, but I do know a fair bit about MS and this does not sound like MS to me. The reasons why I don’t think it is MS is because, while all of these things (except, I think, the night sweats) are symptoms found in MS, it would be highly unusual for all of them to present at the same time if it were MS. It would also be almost impossible to have this number of new symptoms because of MS and still have a normal clinical exam.

The clear MRI in 2011 doesn’t mean anything because, as you say, lesions can occur at any time, however it does mean that even if this was MS, this would be your first attack and as such it would not be possible to diagnose MS. This is because someone needs to have had at least two attacks or to have had a year of gradually progressing symptoms to be diagnosed with MS.

If it were MS and you only had lesions in your spine, you would not have some of your symptoms because they are caused by lesions in the brain (when it’s MS).

I’m not saying that there’s nothing going on, but I think it is almost certainly not MS.

I also don’t think it is ALS or a neuromuscular disorder. If it were, I would think you would be experiencing much more severe mobility issues (you say you can still run after all!).

I also don’t think it is Parkinson’s because some of the symptoms you have listed do not fit as far as I know (my father has PD).

You say you are seeing a neuro soon. Please do yourself a big favour and go in with a completely open mind. Stop googling. List your symptoms in order of severity and cross the minor ones off the list - then tell the neuro the ones that remain. If there’s time, then fine, tell him/her the rest, but a long list is a well known red flag for neuros and almost all of them will simply stop listening. Also, do not tell the neuro what you think it is. They are the expert: let them come up with the ideas!

Sorry if this has been a bit blunt, but I really think you are doing yourself no favours whatsoever with your self-diagnosing.

I hope the neuro appointment goes well.

Karen x

3

Omg Karen! hugs I need the blutness girl. Please don’t worry about that. I need complete honesty. And can you sense my stress through my post alone? :open_mouth:

It’s so funny that you mention that because every consultation I have ever had, I go in with an incredible amount of fear and anxiety (obviously heightened since the T1 diagnosis), that even from the mere LOOK of me, all docs become dismissive of anything more serious. I find it annoying because while YES i am a bag of nerves, it its only because my symptoms are indeed very real and troubling to me.

I know I am highly strung in general - I always thought that is why i somehow ended up with juvenile diabetes at the age of 28. Like my body had enough of my stresses and said, “right, lets destroy your healthy cells - you have brought this on yourself.” I always feel like im on the precepice of something else quite major.

With regard to the MS: I just can’t make sense of all these snowballing symptoms - they are all neuro related - so I feel like i cant assign it some benign cause . What can possibly be innocent about my brain going haywire and leaving physical signs? Plus it seems to be an avalanche all at once. I get twitching regularly, which then moves on to tremors, which then moves on to vertigo, which then moves on to sensory issues and now finally tense legs…how much of this can i chalk to something irrelevant? It’s not showing any signs of slowing down or getting ‘better’ either. Maybe I won’t have a sufficient period of MS remission - i’ll just amble along until it gets much worse and then I’ll get diagnosed…

The clinical exams. Can you have clear clincials and still have MS? Can tests such as walking with your heels in a straight line, pushing the doc’s hand away and all the other little things really pick up something as obscure as MS?

I know my failings - listening to Dr Google and not putting enough trust in the medical professional - it just gets hard to not assume the worst when things are spiralling out of control and new things crop up that seem disconcerting.

" List your symptoms in order of severity and cross the minor ones off the list - then tell the neuro the ones that remain.

I will definitely do this. But it will def be hard for me to NOT walk straight in, take a seat and go ‘hey doc, I think I’ve got MS, Parkinson’s etc etc.’ It’s almost comforting to do that because at least they know my fears off the bat and can get working. lol

Thanks for your support Karen <3

4

Hi Miela and welcome

You said in your first post that you ‘are unsure which awful neuro disorder to cherry pick next’. In short, I don’t think you should! Scouring the internet for answers is something that we’ve all probably done at one stage or another, but self diagnosing can cause no end of additional stress and anxiety, both of which can make any of us feel a lot worse. Besides which of course it’s not actually getting you anywhere and you can certainly do without anymore worries.

I know several people who have diabetes - two who have type 1 and one with type 2 - out of the three of them two have (to some degree or other) nerve damage (neuropathy) caused by their diabetes. Nerve damage can pretty much strike anywhere including the limbs and internal organs such as the stomach and heart, although this certainly isn’t the case for everyone who has diabetes.

I’m not by any means suggesting that there isn’t an additional problem causing some of your symptoms but what I am saying is to have some faith in the doctors rather than searching the internet and self diagnosing. Whilst I can understand your reasons for doing so, it’s not helping you.

If the blood tests your GP has run do come back normal and he does decide to refer you to a neuro, then as Karen (Rizzo) has suggested, make a list of your most troublesome symptoms, keeping the list brief and concise. There are many many conditions that can have similar symptoms and no self respecting neuro will give out a formal diagnosis of ms until other conditions have been ruled out, so it may take a while to get to the bottom of what’s going on…

I hope you get some much deserved answers, in the meantime look after you and try not to Google too much.

Good luck and let us know how you get on.

Debbie xx

5

Clinical exams are designed to test and retest different parts of the nervous system and are really quite refined. And MS actually isn’t very obscure at all: it tends to be pretty evident in a clinical exam. So, if someone is currently having symptoms, they will almost certainly have some abnormal signs (and, tbh, I put the “almost certainly” in more to account for a poorly done exam than the chance of someone not having any abnormalities).

You really really must not tell the neuro that you’ve been googling and think you have X, Y or Z. Try and pretend you are talking about someone else - just presenting a top-line history about another case. Don’t embellish it in any way. Don’t use the word “think” at all! Cold, hard, (calm!) facts only.

There is a benign cause that can cause all of your symptoms and more btw: your brain acting subconciously. We know quite a lot about it, but the brain is still mostly an enigma and can do some extraordinary things without us telling it to! One of those things is what is known as “functional neurological disorder” in which very real neurological symptoms are caused by a perfectly healthy brain. Have a look at www.neurosymptoms.org.

Kx

6

Hi, mmm, it`s been interesting reading your post and dialogue between karen and yourself.

I too am still looking for a diagnosis.

i`ve seen 13 neuros and will see the 14th on Friday. They dont take kindly to self diagnosing, yet sometimes they dont seem to take everything on board that we tell them.

Perhaps this would be a good reason to keep your questions and details to a minmum.BUT we must ensure we tell them the most recent and intense symptoms, eh?

luv Pollx

7

Thought I’d add my two pennyworth, when I first saw a neuro I had no idea at all what I could or could not have, in fact it was she who straight away noticed something wrong. I never, never google symptoms as Karen has said you can imagine that your symptoms match a certain illness. It’s not worth the anxiety, just let them tell you what you have or have not. I wish you luck but please listen to Karen, she is really good and knows an awful lot.

Janet

x