About to approach the doc

New diagnosis and before diagnosis
1

Hey guys.

I’ve had general health problems for the last 18 months. Prior to that I’ve been super-fit, and still am in a lot of ways (BMI, BP, RHR etc).

My symptoms have been vast and multi-faceted. I approached the GP 18 months ago, who did countless bloods etc no results other than being remarkably healthy (which is nice to hear, at least). I was put on ADs for stress - I do have a stressful job, but told the GP I’ve always been stressed and I’m generally the opposite of depressed, but he told me try them. That drained about five months of my life and I’m finally off of them, thank goodness. I saw an endocrinologist, that all looked good. I was sent to a CFS specialist, and that came back as a no as I didn’t fit most of the profile. I’ve tried every food intolerance, and I’m now on an organic pescatarian diet, with no dairy or bread, and have been for a couple of months or so (I was always vegetarian, mostly vegan, but added fish in recently) - but I haven’t noticed any difference…

I was talking to someone at the weekend who suggested that it could be MS. I’ve done some reading. It sounds like it could be. Below is a list of my symptoms mapped to MS symptoms. Also a note about this strange general malaise that comes on that I haven’t seen in any MS research I’ve done.

I’ve got an appointment with my GP next week. I haven’t seen a GP for many months because I got tired of trying to get to the bottom of it, but I want to restart investigations. And I want to suggest MS or perhaps auto-immune. This is a new doctor (my last GP is one of those raised-eyes-and-sigh types) I do not know what she’ll be like though the receptionist says she’s lovely. I’ve also heard that you should never mention MS if you suspect that’s what it is - I’m guessing for these very reasons…

So… A couple of questions. 1. From the list below, does this sound like it could be MS? 2. If so, how should I approach the GP, without mentioning MS, and get him to take this seriously?

Thanks so much, guys :slight_smile:

Fatigue

  • Most days I am tired, I used to have one or two days a month where I feel like normal levels of energy, but that seems to be tailing off now
  • Some days it’s a profound tiredness
  • Some days I feel like I’m walking through soup, limbs are twice as heavy as they should be

Numbness and tingling

  • Occasionally around mouth, lips and tongue, comes and goes, maybe every few weeks I will get this for a few days
  • For periods I will have aches all over, that could be classified as tingles. It’s like flu-like aches, mixed with tingles. This can last short period (hours) or many days.

Spasticity- Every now and then, maybe once or twice in shortish succession, I do get a very, very strange, slight feel like a physical stiffness, like I could just seize up, it’s mostly in the top half of my body, I might have this for a few hours, then nothing for maybe a month or two

Spasms/jerking

  • No

Balance and coordination

  • A little, I seem have little stumbles more than I would, but I’m putting that down to poorer concentration, fatigue

Vision problems

  • I have times where it feels like my eyes are looking in slightly different directions: my right one was looking slightly too far diagonally up to the right; my left eye slightly down
  • Sometimes, if I take my glasses off, I get ghosting, I can still see the frames, this can last for hours
  • Sometimes it feels as if my eyes are just strange, impossible to describe, like thick and mushy, vision kind of looses definition and depth, almost like I’m looking at the world through an old TV
  • My eyes can get extremely tired, stinging, after minimal effort eg driving for an hour, but it’s not consistent

Pain

  • I can have had localised pain on the right side of my right calf, it comes and goes, it feels related to stomach problems
  • Pain in knees, like I’ve pulled something. The pain is great, makes me hobble, a pain I would relate to a serious injury, but then can be gone in a few days.
  • I seem susceptible to pulling tendon/joint, eg resting on one arm, can cause pain in shoulder that lasts for a few days

Bladder dysfunction

  • I cannot hold on, I need to go perhaps four times as much as friends, I have to be careful what I drink and when, so as not to be caught out

Constipation

  • Yes, lots. Also gas, bloating, abdominal pain.

Dizziness and Vertigo

  • Yes, a bit, comes and goes

Sexual dysfunction

  • Yes, this started maybe five years ago. The tablets seem to help.

Depression

  • No, I’m generally very positive and want to do things

Emotional Changes

  • No more than normal. Just frustrated about not feeling well.

Cognitive dysfunction

  • Yes, short term memory is bad
  • Ability to concentrate can be hard at times, I find myself staring into space, and that feels comfortable

Anxiety

  • Only when it’s appropriate, eg work presentations

Speech and voice disorders

  • My ability to recall words or phrases out seems to be a little impaired

Swallowing

  • Fine

MS hug

  • No

The Sudden Malaise

This can come on in moments, I can feel it coming, then it can last hours, or days. This happens regularly for a few months (every few days, to every week), then I might not get it for a month or so.

  • Reflux gets bad 5/10
  • Eyes get very tired 6/10
  • I get tired 6/10
  • I get a headache 5/10
  • Throat gets sore 4/10
  • Feel like I could bowel movement but generally can’t 6/10
  • Discomfort in stomach/bowel area 5/0
  • Feel like I want to stare off into space 7/10
2

Hi

None of us can read your words and say yes, that sounds like it could be, or no it doesn’t sound like, MS. It definitely sounds like there is something not right, but as to what that is, I reckon you need to rethink your approach.

Matching up what you’ve read about a given disease or disorder and trying to slot your symptoms into it is a pretty bad way of approaching any health problem. With MS, it’s worse than usual because although many of us share some symptoms, our actual experience of them differs immensely. And many symptoms that we may have are also shared with other disorders and diseases.

If you suspect there might be a neurological answer to your symptoms, you could try talking to your GP about what you experience and ask for a referral to a neurologist. A GP to some extent and a neurologist would listen to your description of symptoms, consider your history, conduct a physical examination and maybe order some tests depending on what they suspect. The tests would be to rule certain disorders in or out. Only then would they be able to make any kind of diagnosis.

But if you add ‘perhaps autoimmune’ to your query, the net is of course suddenly flung wide open, there are dozens of disorders with autoimmunity as a factor. I don’t think a GP would be able to isolate autoimmune causes and come up with an appropriate specialist to whom you should be referred. And however much I wish there were an autoimmune specialist at each of our local hospitals, there just is not.

So, in your position, if I were you, forget trying to fit your symptoms into any one disease. Sit down and think about exactly what appears to be wrong with you. Write a list of symptoms, take this to your GP and ask for advice and a referral to whichever specialist s/he thinks is most appropriate to your symptoms. You could use the areas into which you’ve tried to match your experience to MS as the basis, but start with your actual symptoms rather than areas of the body that could be affected by MS.

Best of luck.

Sue

3

Hi Sue

Thanks for your reply.

I think I’ve had bad GPs :frowning:

My last one - the one who prescribed the ADs. He would get animated if I had a theory to test, and disinterested otherwise… But as soon as a theory failed, he’d fallback to stress, until I had another thoery.

The GP before that thought I was a hypochondriac - “what do you think you’ve got” - (despite the fact that I’ve barely ever gone to the doctors prior to this). He was literally telling me to man-up and get on with my life.

Hence why I haven’t been to the GP for a long time and now want to go with a theory…

Ah well, this is a new GP. I will try it the way you suggest. Perhaps it’s been bad luck…

Thanks again for your response!

:slight_smile: