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Please could you help?

Hi there, I just wondered if you would please give me some advce. I am finding it incredibly hard to focus on any work or otherwise. I have 3 boys, including a toddler and I just feel anxious and worried all the time.

I have a few niggling little symptoms - do they sound like MS?

I have had problems with a stiff neck - on and off for a few years but not had it for a while until earlier this year (around March). I went to the doctor and told her my neck felt numb which is how i described it although as i could feel it when touched, it could be described more as stiff. As I have antiphosphilipid syndrome (Hughes syndrome) the doc sent me for an MRI immediately as she thought I could have been suffering form a mini-stroke.

Anyway, the MRI was clear.

My neck didnt bother me again again August and has been on and off since then.

Its the other little symptoms added to it which made me think of MS:

All these symptoms have happened this month and are on and off or very intermittent - I haven’t had any of them longer than a day.

  • sore heels

  • Joint pain in right knee and right wrist

  • I woke up once with sore feet, but this subsided after about 30 mins, then it was just the big toe that hurt for about 30 mins

  • I had achey muscles once after coming out of the bath - I had done a few yoga stretches before going in the bath. No probs when coming out the bath since

  • bleeding gums

  • very cold feet and sometimes tips of fingers

I don’t know whether these symptoms are just down to anxiety or something else. I wish I had never googled MS because now it seems like everything points to that and it makes me more anxious. I have been under a lot of stress lately with a couple of close relatives who are seriously ill (nothing to do with MS) and I have a fear of being ill and / or disabled.

Its the not knowing that makes it worse.

I have a referral to a rhumatologist - but have been waiting since March.

Please would anyone be able to tell me if my symptoms sound like I have MS.

Thank you very much for reading

x

I forgot to add that I have had some twinges in lower back - but I have always had a bad posture.

and some sciatic pain through right thigh - not lasting long.

Thanks again x

I dont know about MS but your symptoms definately fit with your APS. Are you on warfarin or a similar drug? I have a friend who has lupus and APS, she used to see professor Hughes in london before he retired. She lives in yorkshire and has had a lot of problems over the years getting the correct care which is why she travels to london. I hope you are getting good care, all the best. x

Thanks Blossom for replying. I suppose it does fit with APS, but I have this fear that it will be MS. I suppose I just have to wait and see the Rhumatologist and take it from there.

I’ve started taking asprin to see if it helps in the short-term. Also taking Tumeric, Wheatgrass, Cod liver oil, Garlic, B12, and Vit D - Did I mention that I am very anxious about this!!

x

I can undersand you feeling anxious. My friend suffers with most of the symptoms you mention. You should really be seeing a consultant who is specialised in APS. If you ever want me to put you in contact with my friend, then just private message me your email and I will arrange it. She’s a retired midwife and very knowledgeable about lupus and APS. All the best x

Just realised you mentioned you’ve been taking garlic supplements. Garlic can thin blood…you mention bleeding gums. Turmeric can have the same effect. It would be a good idea to think about gertting referred to a nutritionist. Be careful with supplements particularly with APS. x

You could be right about the supplements - I didn’t really connect them with the bleeding gums. Maybe its a little too much? I do think I should be seeing an APS specialist too, but my doc (who admitted she knows very little about APS) thinks I should see a Rhumatologist first. Thing is with the waiting list so long it could be a while before if the referrals are done one at a time.

Maybe I should call the doc again on Monday to request it,

I have had a further symptom which is a fluttery feeling in my legs and arms (mostly legs). It started yesterday, and then i’ve had it today since early afternoon on and off. I have heard of this happening in people with MS and APS amongst other conditions. its so frustrating!

It would be really helpful if I could speak with your friend, Blossom. I will pm you, if you don’t mind.

Thanks again x

People with lupus and APS do come under the care of Rheumatologist but they have to be specialised in treating APS patients and not all Rheumatologists are. If your prepared to travel to london then you can get an appointment there under the NHS, your gp just needs to do the referral. When you talk to my friend, things will become a lot clearer.