New member with strange neuro issues

[Diagnosistbc]

Hi There,

Hoping there may be someone in this group that may unfortunately be in a similar situation and can shed some light on what’s going on

I’m a 26yo female, I have been experiencing a combination of strange neurological and pain symptoms for the last few years which I have never had previously, such as:- visual disturbances (similar to migraine auras, but no pain), tinnitus, erythromelalgia, raynauds, patchy goosebumps, horrible widespread nerve and joint pain, allodynia, nausea/ vomiting, tingling, dizziness, Chevoski’s sign, numbness and tremors along with bad bruising (sometimes 20+ bruises for no reason).

I have have a myriad many specialists and nobody is able to pinpoint a cause.

MGI of brain is normal. EMG is normal. Positive ANA, decreased alpha-2 globulin proteins and think there was another coagulation test that indicated something.

Any insight would be so greatly appreciated.

Thank you!

- G

[Hidden]

With the caveat that I’m not remotely medically qualified…

Before I even got to the tests you’ve had, my immediate thought was autoimmune. Joint and nerve pain, raynauds, allodynia…these are symptoms all found with a variety of rheumatological conditions, including various types of inflammatory arthritis, and potentially fibromyalgia, which is a diagnosis of exclusion. Although it doesn’t always correlate and you can have a positive result without any underlying disease, a positive ANA would also lend itself to an autoimmune process, particularly if neuro scans are clear. I would also say that it’s entirely possible if not probable that some of the symptoms aren’t linked, though: you can have migraine without pain, with auras being the only symptom. It’s also worth noting that Chvostek’s sign can be found in completely healthy adults, so potentially not of any relevance. The same with the goosebumps.

Whilst finding one answer for everything would make life quite simple, my own personal experience is that’s rarely the case. Chronic pain can have an extraordinary effect on the mind and body, directly leading to other manifestations that you wouldn’t necessarily expect.

[Diagnosistbc in reply to Hidden]

Hi Charlie,

Thanks for your response. Very interesting. Appreciate it! Here’s where it starts to get a little tricky:-

A number of specialists have leaned towards autoimmune but we haven’t found one that fits 100% which is similar to what your saying. We also trialled steroids for a short period of time and they didn’t help.

They have ruled out that it is fibromyalgia or some type of functional disease early on.

We had trialled migraine medications to treat it with no change. It’s believed it’s not necessarily a migraine but just visual disturbance.

Thanks!

[Hidden in reply to Diagnosistbc]

I was categorically told - even by rheumatologists - I couldn’t possibly have an autoimmune disease because my bloods were all normal. It took me 10 years, progressive joint deformity, and a 250 mile move to a different UK country to finally get diagnosed with a form of inflammatory arthritis, but even that was luck; had my new gp not sent me for an ultrasound of a single, swollen little finger joint, I might well have remained undiagnosed even longer. She freely admits that she almost didn’t request the ultrasound because my bloods were so utterly normal. The reason I’m telling you this is not because I think you have a form of IA - if you had inflammatory arthritis, steroids would help, although it’s worth bearing in mind it can take a week or two depending on the severity and duration of your flare - but to demonstrate that not all doctors are created equal, even specialists. My form of arthritis routinely leads to normal bloods, and should have been an obvious conclusion from my medical history had anyone asked, but was missed even by rheumatologists. Whilst it’s a lot less common than rheumatoid arthritis, psoriatic arthritis is not considered particularly rare.

I know you say they’ve ruled it out, but there are no conclusive diagnostic tests for fibromyalgia, so getting a diagnosis is a case of ruling out everything else and that being the only possible thing left. Have you yourself looked into fibro as a possibility? Many of your symptoms would fit, not just one or two. It’s increasingly considered to be a neurologically based condition, although remains part and parcel of rheumatology. You may find this link useful:

sruk.co.uk/conditions/fibro...

If you haven’t been seen by a consultant rheumatologist, that would seem sensible under the circumstances. In any event, I hope you get some answers.

[Qualipop]

The migraine like auras I also get often. They are called ocular migraines and have no specific cause. Mine usually start off slowly over about 5 minutes so if I need to stop doing something, I can. They last around 10 to 15 minutes before fading- completely harmless.

[Diagnosistbc in reply to Qualipop]

Thanks for your response. Olcular migraines was our original though too. However, I have seen 3 x neurologists and orthamologist and they have ruled out actual migraines causing them. We also trialled anti migraine medication, which didnt change anything.

[Qualipop in reply to Diagnosistbc]

I've never had ordinary migraines, just the ocular ones. I just ignore them. I don't think there's anything that prevents them but they last for such a short time it's not worth bothering. I have a very mild headache after each one. It's very difficult when you have multiple syptoms because doctor's don't put two and two together. I was diagnosed with fibromyalgia over 30 years ago and I have a lot of the same symptoms but there's still no specific t est for it. It's just a case of ruling out everything else. I get sudden exhaustion, muscle pain, brain fog ( Called fibro fog) extreme sensitivity to medications and scents, costochondritis and dozens more. Treatment for fibro pain, although it sounds impossible is exercise. It does work. The more light exercise you do, the less pain you have. Do some research into it and see how many of your problems fit. It may not be but it's worth a look.

[Daesin]

I am not a doctor. I don’t play one on TV nor have I dressed like one at Halloween in many many years. You will not receive a bill for my opinion.

I think that we’re very complicated machines and nothing is going to cover everything. That’s where the doctors get confused. They want everything to fit into one box. and most of them don’t like to say I don’t know. It really tears at their ego.

Migraines, as has been said, can occur without head pain. You can actually get a migraine in your stomach as well as the other poster said ocular. It’s not really in your eye/stomach but that’s where you become symptomatic.

Anyhow. Yes, the aura can take the form of many many things. All sensory sensations and motor skills are at risk. Sometimes it’s a swimmy visual disturbance or even a sick stomach. A news reporter started speaking gibberish and they thought she was having a stroke. That was an aura. Other times it’s the traditional zigzag sparkly visual blowout that prepares you for God please kill me pain in half your head. I’ve read about others who lose muscle control in part of a leg. Get a headache and fall down. Weird stuff!

About half of what you’re experiencing could easily be placed under the umbrella of migraine. If you talk with someone who actually knows what they’re talking about they could probably give you better information on which symptoms fall where. I know that somethings may be triggered by a combination or by multiple issues. Or the lack of something.

But head pain does not necessarily have to happen for a migraine. I know, it threw me for a loop too. I’m Not complaining or missing the liquid lava in half of my head anymore, or not as often anymore. It just came as a shock.

Please talk with your neurologist about possible migraine auras and a complicated migraine. Which basically means you have a migraine with auras (even without pain). It sounds like you got other stuff going on there. I hope they get you squared away. You are so young to be experiencing this much chaos.

My only other thought is hormonal. We live in a soup of chemicals. Make sure that your gynecologist is part of your care team. If not one of the most important ones.

Best of luck

[Diagnosistbc in reply to Daesin]

Hi Daesin,

Thank you greatly for reaching out. That’s very interesting all of the different symptoms migraines can cause.

It’s a tough one, I have seen 3 x neurologists and many other specialists including an orthomologist and they have all concluded that the auras aren’t from a migraine. We also trialled anti migraine medication with no change.

Hormonal is interesting and I don’t think anyone has looked into that avenue , including myself. Thank you, I have some researching to do!

[Daesin]

I have tried every single migraine medicine out there as well with no luck. Every anticonvulsant you name it we’ve tried it, plus if it had an odd side effect I experienced it. I am the zebra. So I totally get your frustration at strange. When you don’t fit into the box. Don’t let them give up on you. Learn everything you can. Best of luck

[Diagnosistbc]

Thank you, and likewise! I know it’s not easy x