Any advice really welcom

New diagnosis and before diagnosis
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Hi everybody. I’m not sure if I should even be here, as I haven’t had an MS diagnosis, but I’d be really grateful of any help and advice you can give me, I’ll be as brief as I can….

I’ve had problems for nearly 20 years, I have relapses. The time between them is getting shorter and the relapses themselves are getting worse and lasting a lot longer. It has been suggested to me by three healthcare professionals that it is possibly MS. However, I was also given a diagnosis of lupus which seems to be clouding the picture. The Lupus ANA fluctuates , so lupus is repeatedly on and off the table.

I have a lot of spinal problems evident on the recent MRI. Rheumatologist sent me to spinal specialist who said I need to see a neurologist. I have been told there is currently a three year wait. Eight month. Wait if I go private. I can’t travel too far as I am in a lot of pain. I am on the waiting list for private appointment for my nearest three counties.

Symptoms….
Massive fatigue,
Dreadfully pain
Pins and needles in hand arm leg all on one side.
Muscle weakness, hands and legs gave way on one side. Can’t hold a cup or brush my hair when I’m in a relapse.
I keep dropping things.
Had horizontal on nystagmus , lightbox effect, bursting stars.
Head is becoming fuzzy.
Electric shocks if I lean forwards, cough or sneeze.
Bladder problems.

I’m at my wits end. Some days I can’t get off the bed, this is more and more common. Life is on hold and I’m desperate.
ANY SUGGESTIONS REALLY REALLY APPRECIATED, THANK YOU . PS , GP says, nothing they can do and I just have to wait This current relapse has lasted eight months ,

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Hi; are you on any medication for the symptoms you currently have? If not, then time to badger the GP for medication to help with the pain (I’m assuming it is neuropathic pain) and fuzzy head.

Gabapentin or Amitriptyline (or a combination of the 2) can work really well for neuropathic pain; and Vit D3 / Vit B12 can help with the fuzzy head/cogfog. Also a referral to Urology for the bladder issues is in order, if it isn’t already in the pipeline.

Once the pain is at a level you can tolerate, and the fuzzy head is a bit clearer it should be easier to cope with the rest of it - when my pain levels get too high, everything else becomes that much harder to handle.

Meditation can also be a very useful practice for handling pain, stress and other symptoms.

1 Like
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Thank you so so much. Coincidentally I already take Vit D and B12. Just because I’m vegetarian.

I will certainly follow up on the other ideas, thank you so so much, Your help and advice is really so appreciated. I find the waiting game to see a neurologist difficult, I keep thinking what if they don’t find what it is and I’m back to square one, But I guess everyone looking for answers with health problems probably has the same fears.

Thank you again for your help.