Cerebellum Abnormality on CT Scan

[rideabike]

I've been on HU for over a year maybe 2 and really didn't know if I had PD even though some symptoms seemed to fit. Just saw the movement disorder specialist who examined the CT and found an area on the scan with abnormality (he showed me) in the cerebellum. It fits many of my symptoms because I have trouble with balance and walk like I'm a little drunk, uncoordinated, dizzy, head tremor... (which he says is NOT dystonia, essential tremor nor PD. Even eyes not focussing can come from cerebellar disorders. He ordered an MRI.

I'm a little confused about BP ---sitting was 152/86 (abnormally high for me) ----standing 134/74 Mayo Clinic website says OH but he never addressed it and I am dizzy quite a bit. Not sure what I can do since I have no GP and use the walk-in clinic.

Wants me off L-dopa (Mucuna) and lithium orotate 2.5 mg. Complained I was self medicating. I haven't really been getting much out of L-dopa lately anyway. I think the amino acids are helping me a lot anyway and I want to keep him happy because he's all I've got to get to the bottom of this.

I still have dystonia in left leg that sometimes gets the ankle twist inward and writhing muscles. Wondering if this could be all part of atypical Parkinsonism.

Mostly concerned about orthostatic hypotension that he didn't address. Any input is welcome. Thanks

[Yanno]

Hello and as always, sorry you need to be here. My wife Jackie has nOH (neurogenic orthostatic hypotension) which has been getting worse of late and so I have done a little research into this - I was like you and didn't really know what it was all about.

At the recent MSA-NJ Conference in the USA there was a session on nOH and it is available on this link vimeo.com/464423304 .

Also the MSA Trust here in the UK have some very useful factsheets on their web site including one on postural hypertension (nOH). msatrust.org.uk/wp-content/... .

I hope these are helpful and please just shout if you have any further questions.

Take care, Ian

[rideabike in reply to Yanno]

Thanks Ian, for the quick response. Yes I seem to be here now and not on the PD site although I will to keep up with some things there. They're like old friends now. New friends here and that's great!

[CanAmK]

I do think you need to be an advocate for yourself if you think something is working. I thought a medicine was doing no good for my husband and told him I guess I wouldn't refill it this month and he informed me that it is SO helpful. So, I think sometimes only you can tell the benefits.

[rideabike in reply to CanAmK]

I agree. I'll have to wait and see if going off completely is better or not. I usually relied on lithium orotate to get me through Canadian winter's lack of sunlight but the combination of amino acids seems to be doing the trick....it's early yet. Levodopa was already losing its effectiveness and I will wait a bit longer and then try some again. He didn't say anything about amino acids and but they're harmless at the amounts I'm taking. Most of these specialist, esp. younger ones, have probably never been sick a day in their life and don't understand . Thanks for the encouragement. I'll keep on adjusting as needed. No drugs for me if I can avoid them.

[CanAmK in reply to rideabike]

And by the way I am originally from New Brunswick!

[Rhyothemis]

Just want to make sure everyone here knows that lithium therapy (at doses similar to those used to treat bipolar disorder) has been shown to cause harm in MSA patients:

pubmed.ncbi.nlm.nih.gov/229...

The patients showed signs of lithium toxicity at blood levels which would not normally cause problems.

Rideabike is taking a very low dose of lithium. Personally, I would still be wary, but I'm glad she has found something she feels is helpful to her.

[rideabike in reply to Rhyothemis]

I was using lithium orotate 2.5 mg, the natural one, not lithium carbonate the pharmaceutical. Lithium orotate is often found in water sources. It's on the table of elements.

[Rhyothemis in reply to rideabike]

I agree that form and dose can both play a role in how a substance acts in the body. I really wish someone would study this in experimental models (mouse, organoid) as I think it would help our understanding of both MSA and how lithium interacts with the CNS in general.