Is this Vasculitis? Scalp

[Digsy]

35 male, I have been to numerous docs over the last 10 weeks but no one has found out what I have.

It started with headaches, then a sinusitis type of ache behind nose and above ear especially when bending over. Then tinnitus and these large cloudy floaters in my eyes. Then I got aches in the scalp and it appears to be raised blood vessels. They feel stringy like muscle. Not pulsating. I realise these aches all appear to be around blood vessels.

I've had numerous docs, MRI of the head, CT of sinuses and thorough eye exam. All normal.

After an ENT visit for my tinnitus and clogged ear feeling, which he found a slight hearing loss and that's all, I told him my symptoms where my scalp has these slighty hardened vessels. He noticed them but didn't go any further stating its nothing to do with the ears.

So I am just enquiring, with Vasculitis, could these slightly enlarged blood vessels in the scalp be a symptom? If they are indeed blood vessels (not sure what else they could be). When I run my finger along the scalp above my right ear especially its like soft shoe laces under there. They are only occasionally sore but usually itchy.

They are no bigger than this. No one notices them. I have another hardened spot on top of my head and I woke up this morning with the vessel in the middle of my forehead (just below the hairline) hardened to the size of a small pea.

Hardened vessels or what??

Sorry for the ranting on. Cheers.

[hamble99b Volunteer]

hi Digsy, oh you're having a time of it at the moment. It's not ranting, it's sharing concerns, and where else is better to ask? I have sinus and floaters and some small raised bumps, but not the veins. regards, sandra.

[Digsy in reply to hamble99b]

Hi Sandra. Thanks for the reply. The small bumps you stated. If they are not on the vessels, what are they? Mine actually are not on my vessels either.

Cheers, Digs

[Ayla Volunteer]

I, too, have lumps on my scalp and soles of my feet when flaring but they are not like shoelaces at all, more like domed 2p pieces. I have had smaller, harder, round lumps elsewhere as well, usually around knuckles or elbows. Doesn't sound the same but what you are gong through sounds debilitating. I sympathize and hope some light is shed on the cause of all this soon, Digsy.

Just had a thought. I am not near my copy of the Route Map at the moment but isn't there a photo in there of someone with Giant Cell Arteritis with this sort of swollen vein pattern on their scalp?

Ayla

[Digsy in reply to Ayla]

Thanks Sandra and Ayla for the response. Appreciated.

Hmm... I do read that Vasculitis sufferers have raised bumps but mine are more along certain spots in the blood vessels in my scalp. Not domed, but more strings of 2p in length. Well, I think they are blood vessels, lets call them strings shall we as they don't pulsate.

I had one string harden up just in the soft part behind the right eye, in front of the temple. Not noticeable but I could twang it like a guitar string. It went away but just noticed it flared up again this morning. Not sore.

I would put it all done to muscle but there are ones right at the top of my head. Doctors said it can't be muscle, but what do they know

I'm just trying to rule out conditions. It doesn't appear sound like vasculitis to me as besides these strings my main concerning symptoms tinnitis and the strange cloudy eye floaters (more like one big cloud in each eye).

Thanks again.

[BronteM]

One of the problems with this group of diseases is that you can have so many strange symptoms, and that some of them don't seem worth mentioning to your GP. Some years ago I noticed that it often hurt to brush my hair because my scalp was so tender. Then I had problems chewing, all this alongside the constant pain in my arms and my endless ability to drop things at the wrong moment! Then, who do you go to for some symptoms? Two years ago I went to have my eyes checked because I was getting episodes when I would be talking to someone and their face would break up like a jigsaw puzzle - but the checks showed nothing wrong, so I just took paracetamol and lay down for an hour or two when it happened. It wasn't until early this year that everything came together, and the scans confirmed the vasculitis diagnosis. Even so, no headaches, and a clear temporal artery biopsy.

So, try to write down a list of even the strangest things; they may all connect in the end. Good luck

[Digsy in reply to BronteM]

What scan did you have done Bronte? Hmm I have no scalp tenderness or chewing problems. But this eye thing is definitely strange. I was at a friend's house tonight watching TV and when I moved my eyes left to right the cloudy spot would zoom past.

I enjoyed a visit to the 5th doc. Within 10 seconds of sitting down, all I got out was "I have these pains in my scalp." I knew it was the wrong start. I should have revised my speech again as the doc immediately replied from his slouched position in his chair "NERVES! Its nerves! This is what keeps us alive!"

I don't know why, but I laughed.

I will write everything down for the neurologist who I am seeing in a weeks time. I don't really want to (due to cost and the fact that I have such weird symptoms).

SO you think the best bet with these docs is to hand them the sheet of paper with the symptoms clearly set out on the onset?

Can I also ask you all, what does alcohol do with your symptoms - worse, no affect or better?

[BronteM in reply to Digsy]

Several scans! When A and E finally realised that I had genuine problems, they admitted me and I had an ultrasound on my arms which showed blockages in my main arteries and explained my weird blood pressure readings and lack of a pulse in either arm.

They followed this up with a CT scan. The results of that meant that they did a temporal artery biopsy. And started me on steroids.

A couple of weeks later I had a PET scan; active disease in some places, not others. I've Just had an MRA scan; results are as expected, confirming diagnosis and treatment.

But I did also have(still do) the sweating, intermittent weight loss, muzzy feeling in my ears, and joint pains that other people talk about.

In the last few months I've learnt a lot! And one thing seems to be that vasculitis is a series of symptoms, and everyone seems to have a different selection. Also that the names they give the different types may be helpful, but that many people have symptoms that cross over from one definition to another.

Hope that helps.

[Digsy in reply to BronteM]

It does!

Can I ask, did you ever have a ESR or SED blood test done? I just had one done today. I know its not definitive but wondering how many here had it done and whether it indicated signs or not of inflammation.

[braindamage]

Please insist on a test for vasculitis! Mine started in just the manner you describe and nobody took any notice until I saw my own GP. Luckily, he sent me straight into A&E.

I wish you all the best and I hope you don't have WG!

[Digsy in reply to braindamage]

I will at the neuro. Looking at the symptoms though...

Frequent sinusitis: Not found by any doc

Fever: never

Chronic ear infections: I have what feels like an infection, the tinnitus is extreme, but the ENT said I didn't

Nose bleeds, pain, and sores around the opening of the nose: No

Loss of appetite: No

Skin changes: Yes - a couple of strange small marks on my face that are not going away

Eye problems: yes

Chest pain: nothing major

Cough: Yes

Joint pain: Yes

Shortness of breath: No

[Digsy in reply to braindamage]

I just had a ESR/SED blood test done. Did you have this and did it indicate anything?

[Tony-LakeDistrict]

As you have joint pain, & a cough. May I sugest if you also have fatigue, then a renal specialist might help.

I hope you find your answers soon

Tony

[John_Mills Volunteer]

Have you had a kidney function blood test ? I think maybe you should ask for one as soon as you can that is if you have not already had one.

All the best Susan

[Digsy in reply to John_Mills]

I believe so. When I went to the ER they did the usual blood work. I think this was included.

Cheers

[John_Mills Volunteer in reply to Digsy]

I should make sure they did.. I remember going to a presentation in Cambridge. A consultant gave the presentation and she said that if someone who has vasculitis has a tingly bumpy scalp it could be a sign that the kidneys are not functioning properly.

take care

Susan

[Digsy in reply to John_Mills]

Just found the report, states that I had a blood work for C-Reactive Protein and a Liver function test. I guess the ESR is the only one to do??

[Chris-Bromsgrove in reply to Digsy]

Having recently been through all of this, one important measure of kidney function is the creatinine level in the blood. Creatinine is a sort of waste product produced by the muscles and filtered out by the kidneys. High levels of creatinine in the blood indicate that the kidneys are not functioning properly, so it is worth checking whether this test has been done. Blood in the urine is another indicator of kidney malfunction, which be easily tested at your GP's surgery.

Hope you get it sorted

Chris

[Digsy]

Well the good news is I grabbed my tests off the medical centre (I couldn't see my doctor) and over the phone they would just say its normal. They took blood and x-ray on Tuesday.

It reads I was tested for dna, anca, ESR, Ana, Crp, RF, CH. The only tests it seems that I can find a result for are ESR (2mm/hr), CRP (0.17 mg/L) and RF (7 IU/L)... so all very normal. I guess the ANCA is still at the lab?

I guess I can safely rule out vasculitis from this? The chest x-ray they won't tell me (or give me) the results of until the doctor has seen it. Its been sitting there for a couple of days now. Anything serious I'm sure he would have called me.

Thanks again everyone, very helpful advice from all on what is a strange and hard to diagnose disease.

I have a neurologist appointment Monday but not sure what she can do more. Hopefully some insight into this and the link to my cloudy vision problem which is my biggest worry. I can live with little bumps and strange head pressure! After all this, I could become a doctor!!

[Oztrax]

Digsy what was your final diagnosis for this ?