Loss of skin sensation.

[Raphael_UK]

I have quite a large area of skin, left hip that suddenly I can’t feel. Although I can’t feel the skin to touch it feels like I have sunburn. Went to my GP, but he has no idea what it is and sent me to a muscular skeletal team but they have no idea what it is either. Has anyone experienced this? I have MPL/ET on Pegasys Injections and L/D Aspirin.

[Applesnpears]

Worth checking with your haematologist about possible side effects of Pegasys.

More likely to be a trapped or damaged nerve. You may need to see a neurologist.

[Trocken]

Is your circulation good around that area? If it’s not musculoskeletal, I would have thought the next teams to explore could be dermatology or vascular team. I hope you get some answers xx

[hansyhand]

I clicked on this as I lost sensation on my right hand. It's back to normal now but continued for a few weeks. I was very tired at the time but also on Pegasys.

[Anag]

O dear. I’ve been having a light burning sensation almost like a tearing while crouching or putting my clothes on on my buttock hips and thighs, now spread to my sides and abdomen. Several doctors don’t recognize it either. Frustrating. We can only keep looking and asking for answers. I can only tip that it either has to do with circulation or the nervous system. I did read something about the fascial system that is right under the skin. ??

What about this? meralgia paresthetica This is similar to my symptoms, but mine go further. It’s worth a try

Let’s pray for some answers.

[MELBS]

Hi, I've got ET and started Pegasys injections 45mg approx 5 weeks ago + take daily Apririn 100mg per day and I've been having trouble with a numb thigh of left leg ever since and don't know why?

But is very uncomfortable in bed not being able to lie on my left side due because of this. I'm due to see my Haemotologist in 10 days and will ask him. I've also been feeling strange with the occasional nausea/sickly, headaches and low moods. Different than when on Hydroxurea which I handled reasonably well apart from skin, hair loss & weight gain probs.

I hope your Haemotologist is able to help you with your symptoms. All the best.

[Raphael_UK in reply to MELBS]

Yes, it’s bed time that’s a problem for me as I can’t lay on that side and even the duvet touching that area hurts. I’ve taken to putting a back scratcher in the bed like a little mast so the bedding isn’t touching me, looks really funny but it helps. I hope you get sorted out, it takes a while to adjust to Peg, and this illness can bring on low moods, try to stay in the sun and think of the nice things in your life. I wish you all the best. Raff

[Applesnpears in reply to Raphael_UK]

Hi, me again.

When you saw your GP did they consider the possibility of a DVT? They are not confined to legs.

An obstruction to blood flow could cause some of your symptoms. Does the area feel unusually warm?

Just a thought.

[Anag in reply to MELBS]

Hi Melbs,

Unfortunately, my haemo has no idea what this is. I believe I’ve read something that fits your description and that has to do with an inflamed nerve at the front or the hip that affects the thigh.

Hope you find answers.

Anag

[jointpain]

Hi, ask to have a B12 serum blood test. There are many drugs that will deplete your B12 reserves which then causes areas of numbness, tiredness, odd pains, and other neurological symptoms.

[MELBS in reply to jointpain]

Thanks for your advise, I will ask for my B12 level to be checked on my next visit.

[Vissen]

I had the same problem in my left upper leg, just above my knee. I didn’t know what it was; When I scratched my nails on the skin it felt so different than at the other side.

Last summer, when I was diagnosed with PV and my hematocrit value had to go down, my leg got better and felt normal again. Maybe the thick blood was the reason of that unsensibily.