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Possible mis-diagnosis...? Idiopathic problems

Dear All,

Hello. I’m new to your forum and so very glad to have found you! And long post alert!!

Ok, I’m not an uncomplicated case, as I have Grade 3-4 ankylosing isthmic spondilolisthesis (since my 20’s) and degenerative alterations to C6-7 (arthritis and bulging discs) accellerated by whiplash injuries. Both of those are under control, though disabling.

I’m here today because I’ve had yet another return to the symptoms which had me suspecting transverse myelitis in 2007 and my GP suspected MS in 2008 (I was 45 yo).

Because of a brain MRI that year which concluded there were “no obvious lesions” and ruled out MS (Q: are MRI’s best / only way to confirm/rule out MS??), I’ve seen umpteen specialists and had umpteen diagnoses. My sense/experience is that each specialist diagnoses in line with his/her pet theory - sorry for the cynicism - rather than empirically or even holistically.

Ruled out (pretty much in order):

  1. cauda equina
  2. hypertension &/or stroke
  3. anaemia
  4. cystitis
  5. type 2 diabetes
  6. hypothyroid
  7. migraine
  8. transverse myelitis
  9. MS
  10. cancer

In 2011 they came up with a diagnosis of Functional Neurological Disorder (a variation upon PTSD) which feels like another way of saying “we don’t know so here’s an umbrella to stand under”.

Am I just a wee bit stupid in thinking: IF a person has list of neurological symptoms and they are diagnosed with condition X, AND receives treatment and medications and makes life-style changes etc., THEN he/she should feel some benefit or reduction in symptoms, right?

So, why am I constantly - annually - returning to being nearly crippled and often bed-ridden for months by:

  • pain that’s off the scale bad, but without real injury or cause
  • stiffness in knees, hips and shoulders, kinda like they’re locked
  • falling when my leg collapses underneath me as if it just wasn’t there
  • loss of balance, coordination and strength
  • being so tired I don’t know what to do with myself
  • vision probs (loss of night vision, field of vision reducing, seeing as if through fog, can’t focus although eyesight is fine at vision test)
  • changes & confusion / lessening of senses (all of 'em - not just touch or heat, but sound, taste & smell, too. Why do I think yellow when I taste something salty/metallicy?)
  • hypersensitivity to heat, cold and touch
  • can’t focus, concentrate, remember, take in information
  • probs pronouncing words - and I’m a linguist, ironically
  • coughs when I swallow wrong which turn into choking which lead to vomiting and hiccoughs in seconds
  • weakness & loss of sensation or mix-up of sensation [pressure>heat] in of the legs and arms
  • tingling in left hand and left foot
  • bowel and bladder probs (somehow, they’re the proverbial last straw)
  • reactive depression (no surprise there)

The above are chronic and at my best I can overcome or even ignore them. I’m never pain-free, however, and have very restricted mobility. At my worst, I’m house (bed or bathroom and nowhere else) and wheelchair bound again. Been keeping a diary for nearly 5 years now and can’t find a pattern or trigger. The above and other symptoms don’t always all present together and at this moment, I’m not - hurrah!! - struggling with tiredness or reactive depression.

I’ve had panic attacks in the past and slayed that dragon. My circumstances are hugely improved since then, so I think I’m right in ruling them out. As far as “affect” goes, I’m cheerful, positive, engaged and wanting to do more than I’m physically able to. Can it be as simple as a deficiency of vits or minerals? I don’t think it’s SAD, as there is no seasonal pattern. My huge frustration right now is I can’t accept any invitations or make plans because I don’t know a) if I can move or b) if I can go longer than 30 minutes without needing my adapted bathroom

Does anyone have anything similar?

What’s never been talked about is fibromyalgia, oddly enough, even though fluctuations seem to be affected by weather (particularly cold and humidity), my cycle and events (stressors).

Should I bring fibromyalgia up with my GP?
Or is what I’m experiencing more like MS?
Is there a form of MS without obvious brain/spinal cord lesions?
Also what part does menopause play?

Eeek! So many questions. I think you can tell it’s kinda eating at me. I used to be such a fit person and really really hate feeling like 90 when I’m 50.

Thanks so very much for reading.

Angua x

PS: Dunno if this helps fill out the picture and apologies for the length: I’ve had a roughish life (major car accidents, abuse, homelessness, and been concussed a few times), but never been hospitalised overnight 'cept when had my son (epidural, caesarean etc etc), and am lucky enough never to have had drinking or dug probs… there but for the grace of God

PPS: You deserve a medal if you made it this far :slight_smile: