Aa
Unable to Walk
28 year old male. I am reaching out on here as right now doctors here only want to see patients who are already diagnosed since there is such a shortage of doctors and even then, wait lists are up to 2 years long.
Back in September 2023 I went to the hospital with what we thought was a normal, really bad POTS flare, however within a few hours I was in a coma and intubated in the ICU. Doctors are not 100% certain what caused be to become unconscious; it could have been my severe hypotension, I had major vitamin deficiencies, I tested positive for Moraxella Osloensis (Lumbar puncture was done which also showed increased IgG levels in the CFS) and possibly some other infections, septic shock, or a combination of things. Upon waking up I had no movement in my left arm/hand (that has since returned) or my lower legs. I now have minimal movement and pins&needles feeling in my right foot but still nothing in the left and have not walked since October. Other symptoms include pins and needles in hands, foggy vision in right eye, severe memory and concentration issues, hard time finding/forming words and stumbling over my words, increased nausea and vomitting, increased fatigue, ontop of my regular POTS and brady-tachy symptoms. Looking back, I had these symptoms before entering the hospital as well.
I had an MRI and EEG done in hospital, both which showed findings, however the findings were just brushed off as being linked to my migraines. I think that this may not be the case and that they may be part of all this. The EEG showed encephalopathy (we were not told this, I read it on reports) and the MRI report is:
There are a few scattered foci of T2/FLAIR signal hyperintensity within the supratentorial white matter. The differential diagnosis would include migraine angiopathy and early microangiopathic changes. Although in the differential diagnosis, demyelination and vasculitis would be considered much less likely.
I know that this is a lot of information, and there is more that I could share, however I am just very much looking for answers and for someone to help me figure this out so that I can hopefully get the treatment to start walking again. I have my hunches as to what it may be, but until it is officially diagnosed, no doctor here will do anything.
Back in September 2023 I went to the hospital with what we thought was a normal, really bad POTS flare, however within a few hours I was in a coma and intubated in the ICU. Doctors are not 100% certain what caused be to become unconscious; it could have been my severe hypotension, I had major vitamin deficiencies, I tested positive for Moraxella Osloensis (Lumbar puncture was done which also showed increased IgG levels in the CFS) and possibly some other infections, septic shock, or a combination of things. Upon waking up I had no movement in my left arm/hand (that has since returned) or my lower legs. I now have minimal movement and pins&needles feeling in my right foot but still nothing in the left and have not walked since October. Other symptoms include pins and needles in hands, foggy vision in right eye, severe memory and concentration issues, hard time finding/forming words and stumbling over my words, increased nausea and vomitting, increased fatigue, ontop of my regular POTS and brady-tachy symptoms. Looking back, I had these symptoms before entering the hospital as well.
I had an MRI and EEG done in hospital, both which showed findings, however the findings were just brushed off as being linked to my migraines. I think that this may not be the case and that they may be part of all this. The EEG showed encephalopathy (we were not told this, I read it on reports) and the MRI report is:
There are a few scattered foci of T2/FLAIR signal hyperintensity within the supratentorial white matter. The differential diagnosis would include migraine angiopathy and early microangiopathic changes. Although in the differential diagnosis, demyelination and vasculitis would be considered much less likely.
I know that this is a lot of information, and there is more that I could share, however I am just very much looking for answers and for someone to help me figure this out so that I can hopefully get the treatment to start walking again. I have my hunches as to what it may be, but until it is officially diagnosed, no doctor here will do anything.
Hello, I am very sorry to hear of your difficulties. For some reason which we don’t know (do you know?) you became very deficient in vitamins and presumably minerals? I hope you don’t mind me asking but do you have eating problems? Are you on the autistic spectrum? The reason I ask is that some people with autism have sensory problems which results in restrictive eating and nutritional deficiencies. Without further information from you, the nutrient deficiencies are unusual and inexplicable.
It seems you have had encephalitis which is serious and has resulted - maybe along with nutritional deficiencies - in severe after-effects. I realise doctors are busy but your situation is disabling enough that they should be helping you. Please pester for more help and rehabilitation. It is not acceptable that you should be left to cope with such symptoms without at least a physio and care plan.
Restoring the nutritional deficiencies is important. You may already have done this. Was the infection successfully treated? I think, being young, there is great hope that you can regain function but it may require good physio and an excellent diet.
Please let us know how you get on.
It seems you have had encephalitis which is serious and has resulted - maybe along with nutritional deficiencies - in severe after-effects. I realise doctors are busy but your situation is disabling enough that they should be helping you. Please pester for more help and rehabilitation. It is not acceptable that you should be left to cope with such symptoms without at least a physio and care plan.
Restoring the nutritional deficiencies is important. You may already have done this. Was the infection successfully treated? I think, being young, there is great hope that you can regain function but it may require good physio and an excellent diet.
Please let us know how you get on.
Are you maybe dehydrated? Fixing that might provide a lot of benefit, and quickly so.
How did you end up with nutrient deficiencies?
How did you end up with nutrient deficiencies?
Would using a screen reader help you? I hate to recommend browsers like Edge (or Chrome), but Edge has a built in screen reader that might be handy for you.
Hopefully you are already zooming in web pages with the mouse scroll wheel to enlarge the text.
Hopefully you are already zooming in web pages with the mouse scroll wheel to enlarge the text.
I'll try to help as I can. For starters, try this youtube:
https://www.youtube.com/watch?v=LW20F3-NjSk
You don't have to watch it, just listening is good enough. I'd listen at least half a dozen times before moving on to another.
Here is the takeway from that vid: try these recommended OTC meds for two weeks and see if you get any better. Since they are OTC you don't need a doc.
- non-sedating H1 blocker like Zyrtec
- the H2 blocker Pepcid
- a mast cell stabilizer like quercetin, or an array of them including fisetin and luteolin (the prescription MC stabilizer called cromolyn was developed out of such Flavonoids from plants)
- I'll add one that the video doc Yellman doesn't seem to know about, an OTC leukotriene inhibitor: frankincense (Boswellia Serrata)
I think most of your diagnoses can be considered to be offshoots from your prime underlying problem, which is an overactive immune system and that specifically being MCAS.
So your overall strategy is to be as anti-inflammatory as possible. That means taking anti-inflammatories as just described. That also means avoiding everything pro-inflammatory that you can -- that includes maybe dust, mold, heat, certain foods that only you can identify. Unfortunately, too much "studying" can also be bad. As is stress and lack of sleep.
So, with someone who is suffering as much as you have been for months, how can you not feel overwhelmed and stressed out, right? We can maybe figure out some ways.
It also helps some people to listen to patient account videos from similar sufferers.
Do you happen to have hyper-flexible joints? That would point to Ehlers Danlos Syndrome, which is associated with MCAS.
https://www.youtube.com/watch?v=LW20F3-NjSk
You don't have to watch it, just listening is good enough. I'd listen at least half a dozen times before moving on to another.
Here is the takeway from that vid: try these recommended OTC meds for two weeks and see if you get any better. Since they are OTC you don't need a doc.
- non-sedating H1 blocker like Zyrtec
- the H2 blocker Pepcid
- a mast cell stabilizer like quercetin, or an array of them including fisetin and luteolin (the prescription MC stabilizer called cromolyn was developed out of such Flavonoids from plants)
- I'll add one that the video doc Yellman doesn't seem to know about, an OTC leukotriene inhibitor: frankincense (Boswellia Serrata)
I think most of your diagnoses can be considered to be offshoots from your prime underlying problem, which is an overactive immune system and that specifically being MCAS.
So your overall strategy is to be as anti-inflammatory as possible. That means taking anti-inflammatories as just described. That also means avoiding everything pro-inflammatory that you can -- that includes maybe dust, mold, heat, certain foods that only you can identify. Unfortunately, too much "studying" can also be bad. As is stress and lack of sleep.
So, with someone who is suffering as much as you have been for months, how can you not feel overwhelmed and stressed out, right? We can maybe figure out some ways.
It also helps some people to listen to patient account videos from similar sufferers.
Do you happen to have hyper-flexible joints? That would point to Ehlers Danlos Syndrome, which is associated with MCAS.
"increased nausea and vomitting"
Has nobody suggested the anti-histamine (h2) Pepcid?
Any skin symptoms: flushing, severe itching?
Lung symptoms? Allergies?
What were your earliest odd/mystery health problems?
Has nobody suggested the anti-histamine (h2) Pepcid?
Any skin symptoms: flushing, severe itching?
Lung symptoms? Allergies?
What were your earliest odd/mystery health problems?
Let' see: mystery illness, multi-system, and specialists are no help...
MCAS is an (auto inflammatory, not autoimmune) mast cell disorder, said to be seen by many doctors but recognized by few. MCs have over 100 receptors and produce over 200 powerful 'mediator' biochemicals -- so they can do a lot of things when they run amok.
It has even recently emerged that MCs can be involved in neuropathies, via Substance-P and CGRP.
"Looking back, I had these symptoms before entering the hospital as well."
That fits with the way that infections can kick an innately overactive immune system into ultra high gear.
"I know that this is a lot of information, and there is more that I could share"
Do post the more. Every clue helps. A good Functional Medicine Internist would be interested in detailed HX and also Fx. Specialists typically aren't - "to a hammer, everything looks like a nail".
You do very well despite the brain fog, so I've sort of given signposts. You seem able and willing to put in the mental effort. That's admirable and necessary. Hopefully you will reply. I'll point you to an intro video talk or two.
MCAS is an (auto inflammatory, not autoimmune) mast cell disorder, said to be seen by many doctors but recognized by few. MCs have over 100 receptors and produce over 200 powerful 'mediator' biochemicals -- so they can do a lot of things when they run amok.
It has even recently emerged that MCs can be involved in neuropathies, via Substance-P and CGRP.
"Looking back, I had these symptoms before entering the hospital as well."
That fits with the way that infections can kick an innately overactive immune system into ultra high gear.
"I know that this is a lot of information, and there is more that I could share"
Do post the more. Every clue helps. A good Functional Medicine Internist would be interested in detailed HX and also Fx. Specialists typically aren't - "to a hammer, everything looks like a nail".
You do very well despite the brain fog, so I've sort of given signposts. You seem able and willing to put in the mental effort. That's admirable and necessary. Hopefully you will reply. I'll point you to an intro video talk or two.
1 Comments
Diagnosis I have:
-POTS
-sick sinus syndrome
- Gastroparesis
- Raynauds
-History of clots (these had a clear cause)
Everything in this post and above was pretyped. Very difficult to read and can only see half computer screen these days. Desperate for help/andswers
-POTS
-sick sinus syndrome
- Gastroparesis
- Raynauds
-History of clots (these had a clear cause)
Everything in this post and above was pretyped. Very difficult to read and can only see half computer screen these days. Desperate for help/andswers
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