Advice and thought please - newbie

Hi

I am new on here but have been lurking for a while to try and make sense of my symptoms!

I am 34 years old with 2 children. Instead of me writing an essay I have a list of my symptoms, which i use for doctors so I will paste it in!

constant widespread pain

  • severe fatigue
  • weakness, fingers, wrists and lower back particularly
  • lightheadedness/palpitations/breathlessness
  • migraines
  • excessive thirst/dry mouth
  • blurred vision (had laser eye surgery in 2011 but husband has noticed me squinting again :()
  • nausea and vomitting (almost every day - esp during period)
  • constant Stomache pain - constipation and diahrea (gluten intolerance)
  • Sleep problems
  • chest pain and tightness
  • Loss of concentration/memory/word finding
  • hot flushes/ cold sweats
  • excessive sweating
  • restless legs
  • itchy skin (especially on lower legs which breaks the skin and scars)
  • shakey/trembling hands
  • Depression
  • Emotionally unstable
  • dry eyes
  • feel a lot worse around menstruation
  • changes in ability to swallow (used to be able to swallow large tablets even without water)

Does this ring any bells with anyone? I have seen my gp who thought Fybromyalgia because my inflammatory markers where normal, but I am on 120mg (max dose) of duluxetine and they are doing nothing for the pain or any other symptoms (except maybe helping slightly with bipolar depression). So he is now thinking something else. I am seeing a rhumatologist in December and have a referral to uch nerology hospital but still waiting for an appointment. I have eds (elhers danlos) in the family but im not and havent ever been hypermobile so dont think it could be that. I am now having to use a wheelchair on trips to the shops and have been signed off work for a month but don’t think I’ll be able to return as I have a long commute and have two young kids to look after when I get home.

Any comments, thoughts or advice would be much appreciated.

Edpa99

xxxxx

Hi Edpa99,

It certainly sounds like something’s going on, and you’re quite right to want to get to the bottom of it, but whilst there is some overlap with MS symptoms, you have a few that are not typical at all. Thirst/dry mouth is not a usual symptom of MS, for example (although can be a side-effect of some of the drugs used to treat symptoms). Also, although sensations of irritation are common with MS, these are caused by faulty signalling, and there’s nothing wrong with the skin itself, so it doesn’t break or scab (Had a v. similar conversation with another poster just recently).

I have a hunch - and it’s only a hunch (I’m not a medic) - that Rheumatology might be the right way to go.

There can be quite a lot of overlap between Rheumatological and Neurological conditions, with some Rheumatological disorders having neurological complications. Dry eyes and mouth, and itchy, inflamed skin sound much more likely to associated with something in the Rheumatology spectrum, than with something purely neurological, such as MS.

I hope your appointment with the rheumy goes well. I very much doubt you will get any answers on the spot, as they will need to run a whole battery of tests (as with MS). But you might at least be progressing in the right direction.

Try not to get too hung up on the idea of it being MS, as it doesn’t sound a good match (unless you have something else too, that accounts for those symptoms that don’t fit).

I hope you get answers soon, and also some treatment that would help you feel better.

Tina

Hi, like Tina I am not sure your problems sound MS like.although some of them do sound to be neurological. But there are at least 350 known neuro disorders!! Amazing isnt it?

My symptoms/problems are VERY MS like, but after 14 yrs of tests, have been told it defo isnt MS. I have spinal cord damage and no-one can tell me what has caused it.

Lets hope your rheumy appointment can help.

luv Pollx

Thanks guys, will keep plugging away to get answers!!

xxxxx