bone changes in autism?
 

Is low bone density, joint pain, arthritis, tight muscles, and anemia common in some autistics? My autistic friend is in very stressful life circumstances and now has a scary physical decline. Now the person is using crutches and is losing leg and arm coordination. I was just curious if the autism is a factor? Are there any progressive neuromuscular conditions that co occur with autism?

Hi funnylegs4,
Is your friend an adult who didn't have these issues up until recently?

Bone density can be an issue with Vitamin D deficiency and that in turn can cause muscle and joint pain, cramps, fatigue, depression etc.. Some children who are on Autism spectrum are at risk of iron deficiency anaemia also.

I remember another post you wrote mentioning fatigue and I guess it's the same friend as you're talking about here? Both D deficiency and iron deficiency anaemia could make a person fatigued.

It is suspected that there is a link between D deficiency and autism in some people. You could find studies in PubMed if you type in the keywords.

If all these symptoms that your friend is experiencing are new and they haven't always had them then they certainly need to be checked out. It is a spectrum and no one person is going to have exactly the same comorbid conditions. More common comorbidities are conditions like epilepsy, tics, ocd or social anxiety. Things like that. However, that doesn't mean that everyone on the spectrum has them.

Ataxia is something that affects coordination and people with ataxia can have problems with their nerves and muscles. Some medications can cause ataxia as well.

Just curious, but has your friend had any type of illness prior to this all starting? A Strep throat for example or were they ever diagnosed with Rheumatic Fever when young?

Motor impairment would have showed up when young but from what you've said this sounds as if it's come on in adulthood, but I don't know how old your friend is now.

Well, that's just some ideas off the top of my head.
take care there.

Thanks so much! I really appreciate the vitamin D tip. This is very helpful. This person is 27 and was healthy up to this age(the other individual was related to a student of mine and had other neurologic issues as it turns out} except for a side to side dragging of the feet gait when walking and some autism related sensory problems. Then back in December this person got exposed to COVID19, but never tested positive and then developed seizures. Despite the seizures being rather obvious the first doctor told this person wrongly it was anxiety attacks so control of the seizures was delayed resulting in the seizures being much worse for at least a month and when the seizures started they developed pain in the joints, anemia which is very difficult to treat because they are deathly allergic to iron when given as treatment, and a scary loss of limb coordination so I'm thinking something in this person's nervous system is shutting down and may lead to death but doctors don't seem to be catching on fast enough to how serious this is because I can see physical changes just on video call...very terrifying to see.

Have they had a full physical exam & work up?
Or second opinions if first exam raises more questions..

Stressful situations especially if long term..can really affect our health..
Nutrition or lack of good healthy foods also.

Bone changes density
 

Indeed. They really need to see their doctor again.

If your friend has already been diagnosed as having bone density problems, I would imagine the doctor has already tested for Vit D and Calcium and Parathyroid or been referred to Endocrinologist?

Something like Vitamin D levels should be checked by blood test particularly if there are already physical changes. It's not always safe to just start taking high amounts of Vitamin D in the hope it'll help. I sometimes see people self-medicating on very large amounts that can in fact be harmful if done without knowledge and/or supervision.

Also, we should never underestimate possible side effects from psychotropic medications.

Regarding the Covid... do you think it's possible they actually had Covid but were tested at the wrong time so it came up negative? Any virus has the potential to cause longer term problems. My daughter, 20 years later, still deals with Post Viral Syndrome (Chronic Fatigue) after having Epstein Barr Virus. She'll be fine for months and then when she gets over stressed, bam, it hits. Never ending story.

Let us know how your friend gets on.
take care

Thanks so much for your input! My coworker has had chronic fatigue for years and definitely thought my autistic friend was exhibiting the same symptoms. A few days ago my friend felt dizzy and now my autistic friend is exhibiting COVID19 symptoms, sounds horrible when they speak like a terrible sore throat, fatigued, and upset stomach like I have seen in others with the new variant of COVID19. They don't have access to a COVID test yet. They are quarantining away from others. They are fully vaccinated and boosted. I hope they recover soon.

My friend with autism recovered from what appeared to be COVID19 then yesterday my BF who is diabetic saw my autistic friend displaying symptoms of diabetes and told them to go the ER immediately.

Hopefully it's just something temporary and it's all sorted with the visit to the ER.
If you ever find out more about their "bone changes", I'd be interested in knowing.

Thanks Lara. This person is now a diabetic and their condition was so bad that they had an episode where they felt they could not breathe and it sounded like choking to breathe. Terrifying! The test related to her bone changes and pain will come back fully on Monday.

Wow. I think there are so many people in the world who are diabetic who don't know until they are in crisis like that. They must have been feeling so terrible for so long.

So update, my autistic friend went to the doctor again and found out her medications for her pre existing conditions(s) were at a dangerously low dose causing a lot of the physical issues she was experiencing so her previous doctors had been completely irresponsible. The diabetes type symptoms appear to be a separate problem from her GI track that may be treatable to reverse the diabetes. The seizures also appear to be epilepsy occurring separate from the medication screw up.

I hope they're feeling better very soon. It's so difficult with having multiple conditions. Sounds as if their doctor is helping sort it all out now. Epilepsy isn't uncommon for those with autism diagnosis unfortunately. I forget the stats but it isn't that low. My two never had seizures thankfully.

Autism and Seizures: Whats the Connection?- Autism Research Institute

take care.

So this person's other issues are due to Lyme disease that had been untreated.

Hi funnylegs, thanks for the update. That's shocking news about your friend but at least they have found the cause of some of those problems at last. I hate to think of how much inflammation has been going on in their body. Just terrible. Hopefully with treatment now their arthritis and other original issues can be helped and that there is not in too much ongoing damage and pain. :( I wonder how long she's had it. Undiagnosed, late stage Lyme can have so many terrible consequences.

This friend of mine is suffering nerve pain and nerve death seemly as a result of the Lyme disease. They use a wheelchair now. They still have issues with their blood and blood sugar levels that lead to being lightheaded and weak if they do not eat on a very specific schedule.

My autistic friend is now blind because the neurologic connection between the brain and the eyes has become severely damaged.

I wonder if your friend or someone caring for them has ever made contact with the Global Lyme Alliance. They have patient support services and information about clinical trials as well as up-to-date research.

Patient Support Services - Global Lyme Alliance

p.s. I just read an article there when I was checking the url and someone has written about how they were losing vision but are now doing better. They had developed swelling on the optic nerve. It's in the blog section.

Thank you so much! We had not seen this. I'll pass this along to my friend immediately. Unfortunately the swelling in my friends case seems to have caused optic nerve dysfunction to the point of 20/400 blindness and no attempt can be made to restore it now apparently. Believe me this person would want the vision restored even a small amount if it were possible. They have now linked my friends epilepsy to their other conditions and the fact that the seizures were uncontrolled for awhile seems to have further damaged the whole nervous system. Now my friend wishes to know how to safely swim as an epileptic.

So my friend finally found a doc that knew what they were doing and turns out my friend has spine damage and brain damage causing a lot of bizarre problems with movement but Lyme is still a factor as well as a reaction to a medication perhaps. MRI said
right thalamus damage
nodule
Tiny dominant of venous anomaly in the left corona radiata
bulging spinal discs at T4, T5,T7.

Is this result linked to seizures? Anybody else have insights on what this means?

My friend has EDS, Ehlers Danlos syndrome which means this person has joints that don't work, chronic pain, chronic fatigue, and seizures and it's genetic. They still have Lyme disease.

Pernicious Anemia
 

My friend has Pernicious Anemia and it was diagnosed after an acidosis episode. Apparently lack of vitamin B12 causes acidosis as well. My friend is at high risk of deadly blood clots.