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Update post 85: The heck is wrong with me

It was odd that it didn’t get a whelp like I do when I get bit by mosquitoes/deer flies/etc. So certainly not one of my usual suspects

My first thought was tick borne something, too. Good luck.

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Yup, me too (third, fourth, fifth, I’ve lost track!)

Tick stuff can just be a bitch to diagnose and treat but definitely start working through it.

The other thing that came to mind is a really weird presentation of shingles (without a rash…)? Or post shingles pain?

I really hope you’re able to figure it out, and soon! Good luck!

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Thanks :slight_smile:

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I’ll definitely be following up on the tick stuff.

A work friend of mine thought of shingles too so I’ll bring that up as well.

Thank you!

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https://www.mayoclinic.org/diseases-conditions/hemochromatosis/symptoms-causes/syc-20351443

My poor aunt suffered horribly from joint pain from undiagnosed hemochromotosis. 2 of my siblings have it and are bled monthly by a physician.

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You need a “tick panel”. Lyme, Erlichiosis, Babesia. Lyme most likely as I believe you are in Florida. Feel better!

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Thank you!

Just throwing a few more things out to ask your drs about

arachnoiditis …it’s rare but you never know!

https://my.clevelandclinic.org/health/diseases/12062-arachnoiditis

And MS……my brother in law started with nerve pain in one arm, it started spreading to his legs etc! Different places to yours, but the fact yours is also spreading gives me pause!

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I saw the neurologist today. I really liked him. He gave me a “soundness” exam, which was funny to me. He noted weakness in my right leg (the one where I get the most nerve pain). He jumped right to ordering a Lyme test when I mentioned the bug bite. He ordered several MRIs (brain included) and mentioned we may have to do a spinal tap to check for WNV. A CT scan maybe too.

His first question was have I had COVID (no). Second question had I been vaccinated (yes). He said he is seeing cases of spinal inflammation as a vax reaction (he had a name for it but it escapes me). MS is still a possibility he will be checking for though since I’m not having numbness or bladder issues it’s not a typical presentation.

He didn’t think the PT was doing anything but making me hurt so advised I quit that. Also didn’t think the muscle relaxers would be helping. He thinks my pain is all nerve related. Gave me a shot in the hip of some nsaid and advised to rest.

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Too bad we can’t legally use neurologists to do soundness exams on our horses. Of course it would be expensive, but if you could not find a veterinarian I think that neurologists are fully qualified to see gait abnormalities. The neurologist may not know WHY, but probably could identify the lame limb or possible spinal problems.

I am glad you liked your neurologist. In my opinion it can be one of the most thankless branches of medicine–your patients rarely get cured, especially without involvement from a doctor from another branch of medicine.

We are lucky to have MRIs for neurological diagnosis. Before the MRIs suspected MS patients were given an “evoked potential (or was it response?)” test and were often accurately diagnosed from that, but I think neurologists get great comfort from being able to point at the brain or spinal MRI “picture” and say, here, this is probably the origin of your problem.

Your neurologist obviously LISTENED to you. Good neurologists can get really good at listening to their patients, brain damage often affects the ability to speak coherently.

Thinking back I had MS for decades before the bladder and numbness issues started. I was always clumsy and had horrible balance throughout my childhood.

I am GLAD you are getting an MRI.

Your neurologist sounds like he may be worth listening to.

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Yes, there are a lot of tick borne diseases, and many are not routinely tested for.

There is also an upswing in Chagas (I hope I spelled it correctly).

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I’m glad you like your neurologist and he’s not ruling anything out! My brother in laws only signs of MS was at first an injured shoulder that wouldn’t heal and eventually leg weakness! His bladder etc was fine

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@lenapesadie, so glad you a) found a neurologist and b) like him. Also like that he’s not the sort that comes from preconceived notions, but wants to check out various possibilities. Well done! Please keep us in the loop. Jingling for you!

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I’m so glad he is listening! Continued good thoughts for a good diagnosis and healing!

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I’ve not heard of that. Interesting. My neurologist did some physical testing of my reflexes and said I had a hyper reflex. He was flicking my finger nails and it made my thumbs twitch. He did it before and after watching me walk.

I could tell he was sad. Like you said, I imagine a lot of his work is symptom control and not curative. He seemed eager to try and rule out any possibilities though, which was comforting to me. I guess he’d rather I have Lyme than MS too.

The shot he gave me provided a lot of pain relief, thank goodness. I dunno how long it will last but I’m grateful to have a break from pain.

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Right! I showed the big bite on my leg to two different medical practitioners and neither offered to test me for any bug diseases.

Thank you for sharing

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Thank you. It was a long wait to get in to see him but I’m glad I was finally able to. He seems a good sort.

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Thank you