Ataxia- autonomic dysfunction or MCAS

[Awol cast iron stomach]

Any one with Ataxia often have symptoms that could fall under MCAS, POTS, or autonomic dysfunction? 

Since returning to work I've been working hard to keep some Celiac\DH symptoms under control. I have been doing well for most part. Even stopped eating in work lunchroom to ensure I am safe from cc. I have had struggles on\off last 8 months with  neuropathy , lightheadedness, hypoglycemic like symptoms, temperature ( to be fair my body is challenged as my workplace has to do AC /HVAC worked on as when I move from one wing to another there are dramatic differences in temps. For example in one wing my co-worker wears sleeveless and the others in another wing was so cold she had her winter coat on in June. Hopefully it gets worked on. I have to move among wings so I try my best to wear layers.

I have begun to wonder if I'm struggling with other sub clinical autoimmune fall out issues since my diagnosis in 2016. 

While the My symptoms fall under those syndromes listed above I am wondering if celiac and ataxia destroys our autonomic nervous system. Or throws off the autonomic/parasympathtic system or makes us vulnerable.  Does this just take longer to heal? Or do most of you still get symptoms from time to time even if the celiac/DH is under control.

I recently switched/ begun to see a different acupuncturist with additional certification/licensing in neurological in addition to her autoimmune credentials. She is currently pursuing doctorate PhD work as well. 

Just need to know if anyone else has had this crop up. As I am trying to get this manageable as I am hired back for fall session and My husband needs/wants me to keep my job and benefits.

Thanks 

[Ennis-TX]

I sometimes wonder if my ataxia did something that effected my body temp, I spent a few months with a constant 101-104F fever, docs found nothing wrong, or sign my body was dealing with anything. It has been tapering down to a average 99F this last week.
There was also the nerve issues a chiropractor confirmed, with damage nerves around the T7 and a few others showing below normal readings when they did this odd electrical testing for nerve functions last year.
They say spine/nerve/brain damage can take years for some to heal.......

I do normally have issues with walking, balance, dropping things, feeling hot/cold, after a exposure. It tapers off after a few weeks, the hot/cold issues lasting months.
 

[Posterboy]

On 6/11/2019 at 8:29 PM, Awol cast iron stomach said:

I have had struggles on\off last 8 months with  neuropathy , lightheadedness, hypoglycemic like symptoms, temperature ( to be fair my body is challenged as my workplace has to do AC /HVAC worked on as when I move from one wing to another there are dramatic differences in temps. For example in one wing my co-worker wears sleeveless and the others in another wing was so cold she had her winter coat on in June. Hopefully it gets worked on. I have to move among wings so I try my best to wear layers.

Awol Cast Iron Stomach,

If you are having issues with keeping your hands warm especially you might have Raynauds  syndrome. RS can happen 2ndary when you have other autoimmune diseases to your original autoimmune disease. ...like Lupus or Sjorgens disease as an example.

Here is a couple good links about it .

https://www.organicfacts.net/home-remedies/raynauds-disease.html

https://www.verywellhealth.com/natural-remedies-for-raynauds-disease-89306

https://healthfully.com/545281-magnesium-raynauds-syndrome.html

I hope this is helpful but it is not medical advise.

Posterboy,

[Awol cast iron stomach]

On 6/11/2019 at 8:42 PM, Ennis_TX said:

I sometimes wonder if my ataxia did something that effected my body temp, I spent a few months with a constant 101-104F fever, docs found nothing wrong, or sign my body was dealing with anything. It has been tapering down to a average 99F this last week.
There was also the nerve issues a chiropractor confirmed, with damage nerves around the T7 and a few others showing below normal readings when they did this odd electrical testing for nerve functions last year.
They say spine/nerve/brain damage can take years for some to heal.......

I do normally have issues with walking, balance, dropping things, feeling hot/cold, after a exposure. It tapers off after a few weeks, the hot/cold issues lasting months.
 

I am still working on it. I appreciate the feedback. I do often have similar symptoms to you. I am not sure if it is an immune issue or more of a neurological issue. As you said I may just be unrealistic about how long the neurological stuff takes. So many of our organ systems can get challenged or need to heal. Meanwhile I am trying to return to the workforce and My body may be a bit challenged by that.

This week I had shooting nerve pain in one leg all the way to tip of toe. The new acupuncturist with the emphasis in Neuro got it under control. I also made sure to get my b vitamins, mg, and others supplement s. 

thank you again for your input . Always appreciated.

[Awol cast iron stomach]

On 6/18/2019 at 5:19 PM, Posterboy said:

Awol Cast Iron Stomach,

If you are having issues with keeping your hands warm especially you might have Raynauds  syndrome. RS can happen 2ndary when you have other autoimmune diseases to your original autoimmune disease. ...like Lupus or Sjorgens disease as an example.

Here is a couple good links about it .

https://www.organicfacts.net/home-remedies/raynauds-disease.html

https://www.verywellhealth.com/natural-remedies-for-raynauds-disease-89306

https://healthfully.com/545281-magnesium-raynauds-syndrome.html

I hope this is helpful but it is not medical advise.

Posterboy,

Thanks for the information poster boy. Yes,the last few months have been hard on my body. As Ennis pointed out I might be unrealistic about the ataxia/neurology component and healing. As MCAS was something my diagnosing team diagnosis and I didn't fit / check all those boxes. Some days it makes me wonder did they miss something. My husband reminds me they did the tests, scopes, etc and it didn't show anything else.

The Raynard's is another good point. My celiac cousin early on let me know about that as she was knowledgeable about that too. While I do get cold toes it is not regular and for the most part I am told my hands are warm.

It is almost like my body gets stressed by the drastic change in temp in the same day and can't keep up. I am hoping that the new acupuncturist can help. 

Thank you again for giving me the info.

[Iiv]

I used to think that I might have ataxia. 

But it turns out that I had diamine oxidase deficiency instead (or at least) . This means that I can't metabolize biogenic amines properly, foremost histamines, because I don't have sufficient of enzymes to do that. 

Everything I eat adds to my bucket of Biogenic amines, and it tips easily over since my treshhold is a fraction of a healthy persons. 

I used to have a body temperature around 96,4-97,2. Always. I couldn't work up my own body temperature if cold, but needed someone else or a hot bath. 

Today I seem to have a body temperature always a bit above 98. And it just takes a few minutes to get warm again. 

This issue has caused a lot troubles, like hypotension, shivers, convulsions, fainting, loosing balance, blackouts, extreme fatigue, difficulty swallowing and walking, pain everywhere (osteopathic, nerve, soft tissue, muscles, chest, throat, headache, abdomen and sinuses), shortness of breath, tingling under the skin. Confusion and what I like to call a wrenched brain. 

Sometimes it feels like running a marathon just to stand up. And exercise increases the risk of a collapse. Sometimes I have no strength at all, cannot press my fingers together. Sometimes I have apnea while "awake". 

I don't know to what extent this deficiency is causing my issues, since I could have other unknown issues. But overdose on antihistamines reduces my symptoms tremendously. Both h1 and h2 blockers. 

 You could still have issues with excess histamines as in mast cell disorders or allergies, but because you lack enzymes to hunt histamines down. This can be a secondary disorder caused by damages in guts. 

[I-CHA]

Yes, I have MCAS, EDS-3, PoTS, ATaxia, Gluten sensitivity, migraine with aura- hemiplegic and basilar, as all linked. MCAS is linked with EDS and PoTS as MCAS cause histamine related vasoconstriction, subsequent migraine with aura both types. That cause brain damage - ataxia with gluten sensitivity and autoimmune ataxia and other neurological symptoms and diseases like MS. Unfortunately  GP and specialists do not make sense of the link between them, and I spent lots of years for research as wrongly diagnosed with FND. Now when lost many years to proof my diagnosis the conditions gradually worsened and some of them irreversible. Good luck to everyone and do not give up!