Update - Report from Consultant. Thoughts please.

New diagnosis and before diagnosis
1

Hi all

Been a bit quiet on here of late as have been rushing around to various medical appointments and also occupational health for work and also had to do some catch up calls for work to helpthem while I’m off.

A copy of the report from my consultant (Rheumatologist) arrived in the post today. It says:

"Diagnosis :

  1. Probable Fibromyalgia / CFS (+/- mild depression) - what does +/- mean?

  2. Left Optic Neuritis

  3. Treated Hypothyroidism

  4. Past history of microprolactinoma

  5. Recurrent vertigo

  6. Recently abnormal LFTs -?amitriptyline related

Findings / progress:

Mrs W’s MRI brain scan is normal , showing no signs of previous episodes of demyelination. On that basis, her current episode of left optic neuritis, which is improving, but which is yet fully to resolve, is a one off, so she doesn’t fulfil criteria for a diagnosis of multiple sclerosis. In the absence of any abnormality in the brain or spinal cord, her symptoms of pain, pins and needles, fatigue etc. can’t be attributed to MS or indeed any other structural neurological cause, though there is of course some evidence of abnormal nerve and corticol conduction thresholds in individuals with fibromyalgia/CFS…blah blah about medication replacing amitriptyline with Doxepin (apparently ‘cleaner’) and my liver tests etc.

…She is due to meet with her occupational health people at work. I have suggested that a reasonable schedule would be to aim to return to work, albeit probably in a part-time capacity initially, from the beginning of September, though that of course is going to depend on how things go. We talked about the importance of identifying achievable intermediate goals such as being able to take short walks, rather than getting straight back to more strenuous exercise. etc etc blah."

So am I a defo ‘not MS’ or in limbo ? Is Fibro/ CFS an adequate explanation given the ON and many other MS symptoms (not all listed above).

The Occupational Health Dr from work said (without seeing the above) that as I had private medical care through work, and given that I’m in a fairly senior position, my employer would be keen for me to also seek the opinion of a neurologist. I’m going to talk to my GP about this next week but I think she (and the Rheumy) may see this as unecessary given the above.

What do you guys and gals think I should do?

Also, I don’t know if I should laugh or cry (probably both given my ‘emotional lability’ symptoms) but I was feeling quite good when I saw these Drs earlier this week but last night and today, the pain has been so bad that I’ve had to crawl back into bed a few times today. Can’t even take a hot bath cos it makes me feel bad and start twitching like nobody’s business.

Your thoughts on any or all of this would be helpful right now. Sorry for long post.

Thanks,

Cx

2

Hi Claire I was Dx with MS on 11th June and my sister in law has fibromyalgia. Some of the symptoms can be similar although I know she has a lot more symptoms of pain than me. I am fairly sure she saw a neuro to get that diagnosis so maybe you should query getting a referral to a neuro anyway. We are both on gabapentin so similar medications also seem to be used for both conditions. I think you should clear up the ‘probable’ diagnosis to get a clear diagnosis either way. Not sure how accurate that all is but hope it helps sharing my experience …so far! Mish x

3

Wow - not sure what to make of that either. I think, if I were you, I wouldn’t completely rule MS out as all the possible diagnoses have ?s over them - probable is not definite. I reckon you should wait for a bit and have a repeat scan next year. They are funny regarding taking short walks etc like we’re complete numpties!!

How do you feel about it? xx

4

Hi Claire

I dont think I would be happy with that report. Its a kinda nothing report… probable surely means ‘I dont really know’!

I was diagnosed with fibro a couple of years ago, and now am having tests for either MS or an inflammatory illness. I was never happy with the dx of fibro as I always thought it was a cop out… I didnt see a neuro, just had a couple of blood tests. Changed my GP and suddenly I am having tests and appointments with various drs etc.

I didnt think ON went with fibro anyway? It just seems that the dr is looking at everything individually and not as a whole?

I really hope you get somewhere soon Claire.

P xx

5

A rheumy can’t diagnose MS, which means he/she also can’t rule it out. Therefore, if I were you, I might want a neurology opinion, but I would think twice because of that clear MRI - a neuro referral may not get you any further forward and so it might be better to wait until something new happens. Saying that, this depends on whether or not you feel that your symptoms have been properly investigated (e.g. have you had a spinal scan?) - only a neuro referral will get you more neuro tests.

Sorry, I don’t know what +/- means. Perhaps Reemz can help?

Karen x