Was anyone misdiagnosed with carpal tunnel syndrome and migraines?

[vickylou01]

I have urticaria, numb fingers when driving,writing, hands by sides, at night and headaches every day. Urticaria lasts approx 48 hours and leaves a mark. I am cold all of the time.

[Nadine99]

Strange that you mention this. My husband has WG but before being diagnosed he was treated for and operated on, for Cubital Tunnel, to move the Ulnar nerve in his elbow. He has numb fingers, little finger, next & half of middle, typical symptom of cubital tunnel problems. He had an op to move the Ulnar nerve, lost all muscle in his hand & numbness still exists. He also has constant headaches in the mornings, with always cold hands and feet.

Don't know whether this was all part of the Vasculitis now??? we will never know

Best wishes

[Wellsie in reply to Nadine99]

That is very similar to what happened to me; release and transposition of the Ulnar Nerve. But this was pre-diagnosis of PAN. Several months later, the same thing symptoms appeared in the radial nerve. I got admitted to hospital and overnight my other ulnar nerve failed. I lost 3 stone in 4 weeks. Had fevers, night sweats, burning joints, proteinuria, and ESR and CRP went through the roof. They even found a massive amount of protein in my CSF lumber puncture.

I have nerve damage in all my limbs, it is all down to vasculitis. An NVC and EMG will be able to show where a conduction block exists in a nerve, and if that is in a common entrapment area such as the elbow, then release and possible transposition are typical surgical procedures. For the patient with vasculitis, the nerve death is attributed to ischemic processes and not external pressure, which is why surgery will not be successful, as there nerve does not require decompression!

[vickylou01 in reply to Wellsie]

Thank you. This all started a year ago with the numb fingers and severe forearm pain, I had steroid injections in wrists which did not help, i was signed off work for about 8 weeks and just rested them, then gradually over a few months they improved. Nerve conduction tests only showed mild in one arm. 6 months later symptoms returned, more steroid injections, this did help a bit but now 3 months later symptoms back and have been getting urticaria for about 8 weeks. it is not all over it is odd lesions on my arms, legs and stomach. They last approx 48 hours, itch like cray and leave a red mark/bruise when they go, antihistamines do nothing. My arms have now flared up again. I've never has typical CTS as all 5 digits go numb. They arm numb when typing, driving, speaking on the phone, hands by my side, in my sleep and forearms are painful, I have worm splits for a year now at night. I also have hundreds of tiny blood blisters on both my arms.

[DREAMONT in reply to vickylou01]

I have the same symptoms you're experiencing I was diagnosed with carpal tunnel went through several injections refused to have both of my arms operated on so glad that I didn't because it was never carpal tunnel it was scoliosis and herniated disc

[vickylou01 in reply to Wellsie]

Did you have a raised ESR and CRP initially as mine are normal?

[Wellsie in reply to vickylou01]

Yes, but I was well "into" the disease by then. At the start of a flare my ESR and CRP are normally low too; not everyone is the same, we all are different, and our inflammation markers vary. In my experience, mine tend to lag 3-4 week behind how I'm feeling and what I experience.

[vickylou01 in reply to Wellsie]

I had my repeat nerve conduction tests today which were normal. Yesterday all of a sudden I had a pain and pins and needles in my left arms my hand went completely numb to the point where my fingers stuck together and I could not move them. Keeping my hand raised like a sling helped and I got feeling back. Do nerve conduction tests show damage or entrapment. I know I am getting numbness just not the cause.

On a plus note I had two punch biopsies of my urticaria done today so hopefully I can get closer to some answers.

[HiveMind]

I have, since diagnosis, been found to have carpal tunnel syndrome and I'm cold all the time too (in between hot flushes!). I also suffered with quite bad migraines before diagnosis. I don't have migraines any more but I do have the carpal tunnel syndrome still.

[BronteM in reply to HiveMind]

Oh I do sympathise! I spend the night throwing off the duvet, then dragging it back on. During the day, I can even have a hot flush, but my husband complains that my hands are cold. Where did our thermostats go?

[hamble99b Volunteer]

hi vickylou,

have you had your thyroid checked? mine was slightly under, but significant for me. I had spent a very hot summer wearing chunky cardigans!

I do have carpal tunnel syndrome WG/GPA amongst others.

hope you find your answers and get help soon

regards,

hamble

[vickylou01]

Thank you all for your replies, I have now been referred to a dermatologist so the urticaria can be biopsied, my complement levels are normal. I am taking 40mg ceterizine, monteleukast and ranitidine daily, not helping the urticaria though. Mine does itch and nothing relieves it and leaves bruises when it goes. The joints in my thumbs are stiff and painful and it is affecting me at work with the numbness and pain in my fingers and forearms. Until the biopsy I won't know for sure but it seems that the urticaria came at the same time as the flare in my arms and hands and the stomach pains and the pin prick rash on my arms. but I definitely do not want surgery for carpal tunnel if that not what it is, as all my fingers go numb, the joint pain and stiffness is mainly limited to my thumb and index finger. My hands and feet have been like ice for years and I have trouble telling temperature with my hands and feet. I have to always check with my elbow when I run a bath for my son.

[vickylou01]

I seem to be gaining new symptoms, does anyone have muscle pain. I was sat in traffic on my normal coomute to work yesterday and when I got out of the car it hurt to walk on the leg holding the clutch, my legs hurt if I stand for periods of time, when walking up the stairs.

[vickylou01]

I am having biopsy tomorrow of urticaria, today I have a new symptom my whole left arm gets pain, pins and needles and my hand goes numb to the point where I can't move my fingers. I feel physically exhausted even having done very little. My muscle hurt to lift my arms. I felt ok until about 5 pm when it all started.

[AllyGY2013]

I found this post interesting as I got alot of pain and soe numbness in my hands/fingers and was told it was the start of carpal tunnel but since being diagnosed with vasculitis and taking preds then plaquenil these symptoms have pretty much gone, I just hadn't thought about it, although the sensation isn't quite right they aren't painful.

I have suffered migraines for about 30 years, on and off, but now suffer severe headaches that do not respond to my migraine meds, applying heat across my face (sinuses) and top of my head helps though.

I get cramp type pain in my legs and feet. I have noticed that they are more stiff and painful recently, the muscles ache after exercise.

Any new symptoms should be discussed with your GP or specialist.

Hope all goes well,

Best wishes

Ally

[vickylou01]

Yesterday went to a&e had pins and needles in my legs then very bad pain in both legs, slight incontinence which I have never had before(I'm only 33). Right leg got worse just above and behind the knee could not walk on it. Luckily not a DVT, no idea why? today it still hurts but rest has helped. Today I woke with patches of painful to touch areas in random places over my body ie the back of my head, under my chin, above my chest, below my arm pits and the top of my stomach, also numbness across the top half of my back. Has anyone ever had anything like this? GP is starting by sending my for an mri of my back.