Thanks @A MyFibroTeam Member, MS was something that was investigated as my first neurologist said my symptoms were classic MS however I don’t have any lesions showing on the MRI. My GP tells me that it is medically understood that 5-10% of MS sufferers worldwide never show lesions however Australia doesn’t recognise this so no lesions means I can’t access the meds. I’ve started to wonder about early onset Parkinsons as my new neurologist took me off Sifrol (a known Parkinsons medication) to try me on something else. Since coming off it I now shuffle, cannot lift my feet very high so stumble a lot, my balance is shot etc. I see the GP tomorrow to see if the new meds are working so she can report back to the neurologist who I speak to next week via a telephone consult. I will raise these issues with her. Part of my problem is that things never show in tests with me. When I was 19 I had a spinal fusion. The tests were inconclusive but showed a possible ruptured disc. I came out of surgery to have the surgeon say there were actually two discs that needed fusing. I had a precautionary appendectomy years ago and the surgeon said, “It doesn’t look like an inflamed appendix, but I’ll send it to pathology just in case.” A day later he sheepishly returned to say it was appendicitis. I had a rapid resting heart rate 20 years ago which should have been showing the second blip missing. (Sorry for the non-Medical language). Finally, a cardiologist asked if he could do exploratory surgery and try and trigger the response. I came out of surgery for him to say, “Not only do you have an extra electrical pathway, but it’s one of the fastest I’ve triggered.” My body seems to hide what is really going on and I can’t help but wonder if that is happening again.
The only pain meds I take is 2 mersyndol forte of a night time. Maxalt when I have a migraine which is not often, but I’m not sure that’s a pain med.
Thanks for your help. I’m rather frustrated and confused.

Mentioned Users

A MyFibro...

Hi @A MyFibroTeam Member, my GP and my own research does confirm this. Evidently lesions can be very small or in areas of the brain where the MRI cannot see in 5-10% of cases. Of course, some of those people will show lesions in the spine, but some will not show lesions anywhere. I've also been told that a neurologist, in Australia at least, may not give a diagnosis of MS even if they suspect it because if you don't have lesions there is no point giving a diagnosis as no lesions means no access to MS meds. I don't know any more than this sorry. The medical world seems to be a rather secretive world. Pass on only the info we want to. Please excuse my skepticism.

Mentioned Users

A MyFibro...

@A MyFibroTeam Member

Thank You for your information I have had a MRI that also said that I didn't have lesions for MS for sometime, they thought that I had Paget's Disease in the Skull as well but I have had more, tests for that and it came back Negative.

So it is still possible to have MS even though the Doctors think not.

Appreciate the information. Blessings to You and your Family.
🙏✝️🙏✝️🙏✝️🙏

Mentioned Users

A MyFibro...

Morning Mumof7,

Yes, swallowing can be an issue with FM. I have anxiety so we tend to eat too fast so between that and the FM I have to be mindful when eating & drinking that I don’t end up choking.

I’ve read your symptoms and wondering if you have any weaknesses in your limbs? Particularly the ones that have a tremor.

You have all the hallmark symptoms of fibromyalgia (FM / FMS) but it does mimic diseases like Parkinson’s (PD), Multiple sclerosis, Lyme disease & Lupus. Lyme is apparently unlikely in Australia but no unheard of. Usually picked up overseas. But with our changing climate & ease of global transportation it’s possible that local infection could happen.

The last 3 conditions have definitive tests to rule out. PD however does not. At your age it would’ve considered early onset. Only a neurologist can give you some direction here. And I’ve heard stories of negative diagnosis of people that have gone on to develop PD. And to complicate matters there is variants of the disease.

Some doctors still classify FM as a diagnosis of exclusion. Meaning once everything else has been ruled out then FM is all that is left. Personally I think it’s a condition or disease of it’s own. It’s just that this word “fibromyalgia” best describes the most dominant symptoms of the conditions.

You’re on a lot of pain medication. I trust your doctor isn’t allowing you to take it together. As depending on that much medication could make your condition worse in the long run. I recommend you insist to your doctor to rule out the big and serious conditions As quickly as possible so if it is FM you can start a treatment program that is beneficial for the long term as it is a chronic disease.

Best wishes for better days ahead and keep asking questions I found no better place than here for support, understanding and knowledge about fibromyalgia.

Thanks everyone. What about swallowing? My absolute worst enemy is water. Believe it or not, it gets stuck! If I keep drinking to try and push it down the water will just back up. Speech Pathologist told me not to keep drinking as I might drown myself. Scope cleared me of any obstruction. And vision? Every morning I have double, blurry vision. It can be other times during the day too but I can count on it being there every morning.