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And still waiting

Hi After years of being told that my pain and numbness was from my lower back. Last summer a spinal specialist told me “this is not coming from your back it is neurological”. So after normal blood tests an mri showing multiple t2 hypertensis and a normal nerve conduction study I am now waiting to go back to the neurologist to see what happens next. Symptoms are right sided. Trunk and leg and foot numbness pain and tingling. Aching arms and numb hands. Pain and numbness in head and face. Numbness in throat. I also have weakness in my legs when walking. Plus lots of other symptoms which vary from time to time. I’m still waiting for a diagnosis one way or an other so that I can then get on with my life. And after a bad nights sleep from pain and numbness I get up to some unknown entity squeezing the life out of my poor ribs. Still I maintain a sense of humour England on the box and beer in fridge. Does this sound at all familiar? The waiting around for a diagnosis that is, not the beer in fridge. Cheers

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2000 i had first symptom. 2016 final diagnosis of PPMS, in between loads of things happened. Its a game of patience this diagnosis malarky. Hope you dont have to wait so long though. xxxx

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Hi Crazy Chick, Thanks for the reply. Had a letter from Neurologist this morning saying she will see me in 3 months. So have to wait a while longer. My problems started about 4 years ago. The amount of times I’ve told the many specialists about the growing numbness that started in my leg then spread to my hip and buttocks has now spread up my right side and across my stomach and back. The numbness is there all the time and some days it is more severe than others. One specialist told me my symptoms didn’t add up, she made me feel as though I was making it all up. But now looking back this was about 3 years ago why didn’t she refer me to a neurologist then. I feel like I have spent several years going from person to person and being fobbed off. It was only last summer at the spinal clinic that I was told it was likely to be neurological. What a re-leaf it was to finally feel as though some-one believed me. But as you say it’s a game of patience. Hopefully sooner rather than later the waiting game will pay off and that I will find out for sure what is wrong with me. I’m sorry to hear about your ppms. When I have tried explaining my symptoms and the possibility of m.s. to family and friends I realized how little people know about it. My Mum was quite horrified and said OOH where did you get that from no-one in our family’s got any thing like that. I was tempted to tell her that I caught it off a toilet seat. Thanks for the support Crazy chick. Feel like a weight has lifted. Although somebodies still squeezing the ribs though. Wilma

Hi Wilma, I can relate to you. It is very frustrating when you have symptoms and madw to feel like it’s all in your head. I have had problems since 2008 and only recently been taken seriously despite MRI scan showing lesions/hypertensities. I have numbness,tingling,migraines,memory problems,balance problems,fatigue,pain etc the list goes on! It can take a long time. I hope your appointment goes well. Has ypur gp given you anything to help? Lina

Hi Linamumof4 . Thanks for the reply. I am only taking pain killers at the moment. Have had Gabapentalin starting with small dose. But after a month of feeling dizzy and some days couldn’t get out of bed Doc told me to stop taking it. But really need to go back to see him. The numbness is becoming more wide spread. Pain tingling you name it. Ribs have been squeezed for the last 10 days or so (Whoever named it the hug hasn’t experienced it). Scary thing though I get numbness and tingling in my mouth and throat. Sunday had a choking fit. Only swallowed and throat went into a spasm. So really must go back to the Docs. Regards Wilmamumof2 grannyof3 wifeoflongsuffering husband.Bless Him. And still maintaining my sense of humour.

Hi Wilma

If you’re experiencing nerve pain, paracetamol and ibuprofen won’t touch it (you’ve probably figured this out for yourself!)

Assuming your pain does come from a neurological cause, and it’s the tingling / burning type, Amitriptyline might help. And that’s a drug you can get prescribed by your GP. It comes in 10mg tablets and you should start at that dose, only building it up as needed once you become accustomed to the dose.

If you decide to try it (and your GP agrees, which they should, it’s a common drug), you should take it in the evening. It has a mild sedating effect so would help you sleep as well as control pain. But you need to take it by around 7-7.30pm to avoid any drug ‘hangover’ type effects the following morning. People tend to get this kind of side effect when they take it too late.

I’ve been taking it for some years and it’s not a drug that you tend to develop tolerance to, so increasing the dosage doesn’t happen (for me at least).

And for the spasms, regardless of the cause, a drug like Baclofen might help. It’s a muscle relaxant and one that you can take through the day. Again starting with low doses. It might help with the lovely cuddly ‘hug’ as well as other stiffness / spasms. You could ask your GP for that too. Some people find that it makes their muscles too weak, so dislike taking it (your muscles need a certain amount of stiffness to be able to work!). Apart from that, it’s pretty well tolerated.

Although obviously, decide which symptom you’d rather sort out first, take a drug to help that and leave it a few weeks before starting another drug. That way you’d know what side effects (if any) apply to which drug.

Best of luck.

Sue

When I was getting no where and everything took for ever. I sat in front of my GP and said pain pain pain… I don’t care what I have but help with the pain. If Gabapentin doesn’t ‘do’ there are lots of others. I recommend the above GP-chair-pain!! Good luck, M x

Hi THanks Sue and hellms Will go back to see Doc. I have not done the chair pain pain thing. But have done the chair cry cry thing. Felt much better afterwards but such a fool when I had to walk back through a waiting room of patients on the way out with a red face and swollen eyes not a pretty sight. But will make an appointment and discuss the alternatives. Thanks guys.

Hi Wilma You grab the initiative, what is most important to you? For me it was pain but I could not deny that I was feeling ‘down’ - Amitriptyline dealt with both and let me sleep! We are a positive bunch here. Take care,be safe M

Hi M, Appointment booked. Many Thanks Wilma

Hi Wilma, Hope you get sorted asap. Lina

Thanks Lina. Everyone has been so kind. I do appreciate it especially as everyone here has their own struggles .Best Wishes Wilma