Rapid scary symptom onset

[Jojo79]

Hi all, my symptoms have become very severe and I'm confused about what's happening. It doesn't look great. I don't know if any of you have had anything like this:

Severe migraines set off the more severe problems recently with terrible low blood pressure and trouble breathing. Also horrible feelings of anxiety and jitters all day long sometimes. 

The awful scary thing is that my swallowing function has gradually become severely incapacitated in space of a few weeks. I cannot safely initiate a swallow. It feels like I have lost control of it and the weakness is profound. So I can now only manage liquids and that's even scary. Sometimes it goes down and falls down my throat almost which sets off awful panic as there is no control of if. I also have been getting scary sleep apnea. I've been in hospital and had a brain scan and they just said no deficit there. But there massively is. Feels like a stroke! Been seeing Prof Matthias for tests but I worry there will be no clear explanation. Awaiting outcome of tests this week. I've been checked for primary muscle disease like ALS and this is clear. Im guessing this is a polyneuropathy of unknown cause as I have suffered from sfn for a while. 

I often feel like my brain is falling asleep and I can't control things. If the autonomic reflex is gone from such damage I guess there is no coming back from that!? Feeling scared and confused. 

Edited September 16, 2017 by Jojo79
Typo

[Guest KiminOrlando]

You may want to have them rule out Multiple System Atrophy. It is very, VERY rare, so don't panic. You would also have more symptoms, but maybe you aren't disclosing them all. I highly doubt this is what you have and this should be quickly ruled out.

Then maybe they can look at Pure Autonomic Failure. After that,  you could see a gastroenterologist for swallow tests. It is more likely you are dealing with something like hyperPOTS with gastro involvement - much more common, and somewhat treatable, but maybe not the swallowing part.

None of this will show up on brain scans. What types of tests did they do? You mentioned that you were waiting on results.

I know this is frustrating. Hang in there.

Kim

 

[Jojo79]

Thanks Kim. I have mentioned MSA and therr was no suggestion this is happening but maybe only time tells. I have had a large range of tests but fear there will be no explanation for the swallowing. I am seeing a wonderful neurogastro in London and we are starting with endoscopy next week then go from there. 

It's hard waiting while you lose important functions. I had a fluroscopy where you drink liquid and they video on x ray. I have slow motility of eosophagus but said swallowing is fine. It isn't fine, it runs out of energy quickly and then doesn't work properly. 

I'm prepared for something horrible like MSA. Waiting and the uncertainty is the hardest 

[yogini]

HI, need some more background about your diagnosis, symptoms and doctor's advice.  But it isn't unusual to have a rapid onset.  And actually people with rapid onset have the best chance for recovery.  It's scary, and it takes a while to recover, but the best thing to do (since there isn't any other choice!) is to read up and just keep plugging forward.

[corina]

I've been having the swallowing problems on and off. They have been pretty bad up till a moment I was in a restaurant having lunch, starting to cough and really thought that was it. Fortunately I got through but I do understand the scariness! I agree it may be an idea to get things checked out but MSA is quite uncommon fortunately!

[Jojo79]

19 hours ago, yogini said:

HI, need some more background about your diagnosis, symptoms and doctor's advice.  But it isn't unusual to have a rapid onset.  And actually people with rapid onset have the best chance for recovery.  It's scary, and it takes a while to recover, but the best thing to do (since there isn't any other choice!) is to read up and just keep plugging forward.

Hi yogini, things have been bubbling under for a long time but nothing major. I had tummy issues, bit of tachycardia, some adrenaline surges buy nothing major. The new issues are what came on overnight almost.. 

Severe migraines, pressure all round my head and eyes, eyes not working properly, breathing difficulties, tachycardia, spasms all through digestion. It may be a coincidence but I took some codeine the night this all started so badly and couldn't feel my face or arms and felt on another planet. Then the swallowing gradually worsened and now can hardly even swallow liquid. My entry jaw and face runs out of energy. 

I saw the best neurologists over the last few years and had every test, muscle biopsy the lot to check for neuromuscular issue and they have said repeatedly that they do not see that happening. I do have small fibre neuropathy so guess that is causing alot of damage. I will say that my head and neck just don't feel right, like every muscle in neck and face is being pulled all the time. 

[Jojo79]

9 hours ago, corina said:

I've been having the swallowing problems on and off. They have been pretty bad up till a moment I was in a restaurant having lunch, starting to cough and really thought that was it. Fortunately I got through but I do understand the scariness! I agree it may be an idea to get things checked out but MSA is quite uncommon fortunately!

Hi Corina, you can never say never with MSA diagnosis I feel as I know it's so hard to diagnose. The suggestion was that all the tests I have had will possibly hint towards whether that's happening or not. It doesn't totally fit for me but nothing does. 

I totally understand the swallowing thing, it is truly awful 

[yogini]

I don't have trouble swallowing but I think it has come up in the forum. You might want to do some searches.

A lot of times people have co-conditions with dysautonomia that account for the symptoms that can't be explained by POTS or NCS. I think that would be more common than MSA. Also, my understanding is that in MSA atrophy is usually gradual over a long period of time. I think you are seeing a very well-regarded docotor and so you are in the best possible hands to figure it out. Good luck. Keep us posted.