a dozen different conditions and no treatments

[charlieab]

Hi

From having no health issues in 2015 I now have 12 conditions and have been struggling to get some sort of over-arching diagnosis. This jouney has raised the posibility of scleroderma, APS, and vasculitis. Vasuclitis still seems to be a posibility but negative blood tests suggest that scleroderma and APS are unlikely. Here are the conditions "picked up" in the last 18 months.

1. Severe tinnitis which went from two quiet noises to now eight plus loud noises. .

2. Tonic tensor tympanic syndrome.

3. Patuous eustachian tube disorder.

4. TMJ with clicking and other sounds.

5. progresive hearing loss.

6. Visual snow.

7. Posterior vitrous detcahment.

8. Light flashes, persisnet after images, shimmering.

9. Blurred double vision.

10. Osteoarthritis.

11. osteoporosis.

12. Raynauld’s.

13. Psoriasis.

14. Possible Psoriatic arthritis.

15 white matter lesions.

16. Almost constant headaches and frequent dizziness.

17. Joint and mucle pain and clicking in most of my major joints.

Together these have made life pretty tricky. And the fact that things keep getting worse is disturbing.

One possible piece of the jigsaw has been put in place in that two weeks ago the consultant rheumatologist told me that I have psoriasis and that I could well also have psoriatic arthritis. This would explain some of teh conditions I think (like the joint pains) but far from all the conditions.

I would be really grateful if anyone could tell me whether psoriatic arthitis could have caused the levido retucularis (lacy red-pule pattern on legs when sit down for too long) and any of the other symptoms i mention.

Thanks very much.

Best wishes

[Radley01]

I have psoratic arthritus and also tinnitus iv had an mri of my head nothing showed up..it started about the same time so im sure its part of it..doesnt seem to be an issue with my rheumatologist..i also have vitiligo all over except my face..which is another auto immune condition..i also have problems with my ears feeling heavy or blocked..i went to specsavers for a hearing test..he said my hearing was excellent for my age...nearly 50..so yes i think its all connected..before i got diagnosed with psa i had a stiff face..sore joints..thankfully the methotrexate has helped a lot with this..good luck with your diagnosis...xxxx

[charlieab in reply to Radley01]

Hi Radley01

Thanks for your reply. Sorry to hear about the tinnitus but good news about the hearing.

I think I will discuss posible medications when I see the consultant. Seems like a lot of ppl find methotrexate helpful, though I know a some have had side effects. Thanks again. Best wishes

[Hidden]

Hi there. Autoimmune conditions tend to like company so if you have untreated psoriatic arthritis it could explain some of the symptoms. I had severe shivers before diagnosis, teeth-chattering, needing 4 duvets and a hot water bottle (in May) etc. I think that was due to high levels of inflammation. Psoriatic can most definitely affect the eyes and the ears too, I believe.

In your situation I would do everything possible to get a firm diagnosis and appropriate treatment ASAP. Meanwhile, although clearly you are having a very tough time, please look after yourself really well. If you can exercise at all - I'm not talking cross-training, even a regular stroll in the sunshine counts - then that will really help your body. Exercise is one of the key ways of managing PsA, much as it seems to INCREASE fatigue, pain etc. at first, you may well feel that bit better or at least more stable over time. Eat well too, good nutrition, as much quality sleep as you need, without becoming sedentary, any sensible healthy lifestyle approaches will help to a degree.

So very sorry you've got this little lot to contend with. You must feel as if it's hard to know where to start. But take a deep breath and think to the future, there are some pretty good drugs for PsA if that is what you have. I have been extremely unwell with PsA in the past, but that now feels like ancient history. It's not going to be easy but what is very positive is that your rheumy is on the case ..... please keep us posted about how things develop. And please post if it all gets too much or even a bit too much, don't suffer in silence.

[charlieab in reply to Hidden]

Thanks Postlee. I thought Id replied but either I forgot to click submit or I imagined the whole thing! Brainfog seems to be in the driving seat atm. Anyways, hope you are doing ok and thansk for your kind and helpful words.

You are right about autoimmune conditiosn travelling in groups. I just hope that I dont have a coach load. And you are right about the diganosis. This has dragged on way too long already. I hope to make soem progress this week, with GP NHS referal and also booking aprivate appointment (as NHS waits are ridiculous atm). As regards exercsie, I was all ready to do a sponsored marathon (or at least think about doing it) but have now been told by the PSA helpline that I need to avoid impact sport. So have put an old exercise bike (gathering dust in the barn) onto the grass. Just needa sunny day now! Or a large umbrella.

Thansk again for all your help. I will post about what happens with getting referal etc .

Best wishes

[Hidden in reply to charlieab]

Wowzer! A marathon! I suspect you can still move some, well obviously you can! That's so good. I can see that high impact sport is perhaps best avoided right now, but clearly you must have a fairly good level of fitness despite all the things that are going on. And I realise that can often be the case. You're right to get professional advice about exercise but I'm sure you'll be able to do a lot more than 'stroll' LOL! And that keeping physically fit will benefit you hugely.

Good luck with the appointment. I'd be really interested to hear the outcome. If anything on your list is exacerbated by stress and uncertainty then just having a good consultant or consultants behind you, a firm diagnosis and a treatment plan that makes sense to you might have a very beneficial effect too. My PsA doesn't like me being all at sea ... it doesn't like a lot of things, brat that it is, but simply knowing that I'm getting appropriate treatment and having a rheumy I trust does seem to help with physical symptoms to some extent. Odd but true.

[charlieab in reply to Hidden]

Hi Postle

I was kind of kidding about the marathon. I had planned to do one when I first became a bit ill (i.e. some hearing issues) but things have got a good deal worse since then. There seems to be conflicting advice on exercise and arthritous. I would love to play a bit of badminton but need to 1. check that it wont cause more damage and 2. find some one prepared to play with a hobbling opponent. P{eople I use to beat at it might be kean for a rematch.

Glad to hear that things are kind of working out with your rheumy and thatbyou are getting the right treatment.

Thansk again for your reply. Look after yourself.

[Hidden in reply to charlieab]

I think the most frequent advice I've heard from doctors and other patients alike is 'just do it'. I moved very little when both knees were enormous, very stiff, very painful. But later realised that I should have done more, even if just the gentle (but still agonising!) physio exercises 'cos I lost muscle mass so quickly and that contributed to osteoarthritis in the joints I believe. Care with a flare but otherwise more good than harm ensues I'm sure.