Questions about MSA

[rideabike]

I'm new to this forum and live in British Columbia, Canada where there is really no support right now. I was diagnosed 2 years ago with dystonia (oral facial) that is responsive to L-dopa but it's much more than dystonia. I wrote a list for my appt. with the dystonia clinic...when? I won't even guess. I feel like I could have MSA and don't think I'm over reacting because I see a fast moving decline for me at age 69. I would really like some of your expertise on MSA so here's the long list. Be honest please. I've done quite a bit of research on it and would be surprised if it's not MSA. It doesn't seem to fit PSP or CBD. I'm not at a stage where I'm unable to stand or need supports to walk but the legs going weak is disturbing since I'm on my own. If anyone had that symptom did it take a long time for it to progress? OK here's the scoop.

Poor digestion....slow and uncomfortable after eating almost anything.

Poor swallowing. Assessment showed decreased tongue base movement. I choke a lot, sometimes on air or saliva.

Shortness of breath as day progresses with chest stiffness. Breathing is rather gaspy sounding and loud (to me), but not stridor.

Vocal cord problems at times and crying or singing hurts, painfully.

Very uncomfortable by 11am with stiffness in jaw, face, head, neck and internally. If I don't take levodopa by then I don't really function.

Dystonic neck tremor when off levodopa or tired, lying down before I sleep or when waking up and often the first thing I feel in the morning and the tremor is in my upper chest as well.

Walking and movement slow down as day progresses. I feel occasionally that my head is not connected to what my feet are doing. I have to step down carefully and concentrate at curbs. Feels like I'm walking drunk occasionally, esp. when physically tired. Equilibrium is off more than balance.

Occasionally drag left foot if I've done too much in a day. May slightly stoop forward while walking.

Feel like I disconnect from everything around me. Will sit for hours doing the same thing almost obsessively.

No interests socially and much worse since COVID.

Fatigue causing sleep for hours in the daytime.

People and conversation seem to hold no interest (I'm glad when its over) and I don't read facial expressions easily and feel my own are not expressive.

Occasional slurring of speech.

I find it difficult to follow a conversation or keep my eyes focussed on the subject whether it's a talk, conversation or book and lose track of discussions or characters talked about. Typing....can't find the keys, reverse letters.

Cold hand (only my rt.) often in cold weather and Reynaud's syndrome occasionally any time of year in both palms.

Temperature sensitivity. Cold and heat feels intolerable at 22-25 deg. makes me feel faint sometimes and close to passing out.

Anhedonia (loss of pleasure) as well as apathy about taking supplements or L-dopa, calling friends and visiting them. I am not really depressed and can laugh about life easily. Don't enjoy eating or notice smells of food but I enjoy making meals.

***Weakness in my legs comes and goes. Weakness in forearms which always feel overused.

Left ankle occasionally turns inward and cramps up while sleeping or walking. (dystonia). Leg can stiffen up and feel painful at night, like a hip to foot cramp, not just in one set of muscles.

Something snaps like a rubber band in center of right palm but has progressed to right middle finger contracting inward and whole hand is stiff. Fingers get stuck bending at joint in both hands.

Recently had forefinger and thumb tremor while resting in bed. Very fast tremor. Happened once to same forefinger about 5 years ago....like a flutter.

Bladder feels like I have to go much more often and leak after going. Urge happens after emptying and even a small drink of water forces another trip to the bathroom.

Constipation is an ongoing battle.

Recent eye specialist report diagnosis.... Convergence deficiency and exophoria, eye muscle wants to move it outward).

Extremely dry skin and dry eyes.

Fatigue like sleeping 1-3 hours during the day often and needing it.

Sleep is difficult at night so I take a lot of supplements to help me relax. (L-theanine, 5Htp, melatonin, etc. High anxiety... (one of the first symptoms).

Levodopa helps with relaxing my jaw and neck and I feel more like smiling at people and socializing but as soon as it wears off in 4 hours I'm back to square one. It seems to help chest and internal stiffness and walking for a short time as well. Sometimes it doesn't work that well.

Do you see any of these as early symptoms and am I right to feel warning bells?

[Yanno]

Hello and welcome albeit as we always say, it's a shame you need to be here. The first advice I would give is to look at the web site of the MSA Trust here in the UK. There's loads of advice on the site including details of the symptoms associated with MSA.

One of the troubles in defining MSA is that everyone has a different journey, no two people have exactly the same symptoms. Some of the things you describe are familiar to Jackie and I, others are not.

We all become experts on our loved one's 'set of conditions' but maybe not on everyones. I am sure others here will be able to add advice more wisely than me.

For us, the high anxiety is not something I recognise and Levodopa from what I have heard does not have such a dramatic benefit for many with MSA. Jackie takes it but it is very marginal in it's benefits.

Let's see what others have to say and if you have further questions as you are outside of the UK you can email the MSA Trust for advice - details on their website.

Good luck and take care, Ian

[rideabike in reply to Yanno]

Thanks for taking the time to reply. I read the same about levodopa and also that it may work longer in some more than others. I keep wondering what it must be like to not have it to fall back on.

[Crodiet]

Hi

Unfortunately you only get a proper diagnosis on autopsy. So here’s hoping that’s a way away. As Yanno said everybodies experience of MSA is different. My sister got her ‘provisional’ diagnosis 20 years ago from Prof. Quinn, with the prognosis of 4-20 years, so when we went for her review they did a whole bunch of tests again to see if the MSA was a mistake but as far as they can tell it is MSA. It’s important not to rely on websites for diagnosis and treatment, again as Yanno said contact the MSA trust they are super helpful, I don’t know if any of their nurses is able to talk to you since you aren’t in the UK, but we(I) have found them really a life saver when dealing with new, scary symptoms.

Good Luck.

Best advice I can give is find yourself a good support network, even if it means moving and don’t dismiss help from professionals, because tried it before, I’m not depressed etc. Sometimes you have to keep trying things and sometimes things like SSRIs work for things other than depression. BUT ONLY DO THINGS AFTER TALKING TO A PROPER MEDICAL PROFESSIONAL NOT AN IDIOT LIKE ME!!!!!!

[rideabike in reply to Crodiet]

I've been on HU for over a year and have learned a lot. I'm in an area where there are few specialists and long wait times.... 7 months before COVID took us all by surprise.... but now more likely a year or more.

A lot of us will be in this predicament as our healthcare systems are stretched so support groups might be the only resource we can get.

I moved recently and the specialist is now 1 1/2 hours away, close enough but I don't expect the local walk in doctor to be much help, although he did refer me to the dystonia clinic.

I've never had shortness of breath or my insides constantly squeezing swallowing mechanisms and breath nor had my legs go weak on me as well as the many other unusual symptoms in the past 5 years. Dystonia and PD are not known to cause some of the things so I am trying to find out what else could be doing this to me. As you said an autopsy will tell but is a little late to be of any help.

It is a comfort to know members of sites like this will share information. A year until my appointment could show some drastic changes so if anyone wants to share their early symptoms it would be appreciated. I'm not the type to panic but ignorance is not "bliss" either and I may need to put things in order for what's ahead. I have no family nearby.

The movement disorder specialist that diagnosed me with dystonia sent the report to 2 doctors who did not inform me. Levodopa was not advised (?) and so I was another year without knowing and denied the only medication that could help me. I learned a lot about supplements on the PD website and many other things and L-dopa has been extremely helpful. I finally asked for a copy of the report and since then have done everything for myself by research. Thanks for your reply and any others who have the ability to add to my research. Take care and stay safe. I care!