I’ve picked up a lot of tips and advice from you lovely people in this community and am hoping for some on this subject. My husband was initially diagnosed ( as many others have been) with MS. Twenty years on an MRI proved it not to be the case and he was referred to Queens and diagnosed with Idiopathic Cerebellar Ataxia, that was back in 2010. He has been under local Neurology since the beginning with little support. Over the past few years pain has been his worst problem with nothing relieving it with the list of things tried filling an A4 sheet ! At the moment he has extream pain in his left leg from the front of his thigh to his knee. All tests have come back negative (bloods, CT, MRI.) Sleep is a premium, we don’t go out together, meals are prepared around ‘the pain’ and conversations limited because the pain is all encompassing.
Sorry I’ve waffled on …..we are so desperate to get our lives back to some normality and for me to see my poor hubby pain free (ish)
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Linsue
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Thanks Wobblybee unfortunately we have tried literally everything including physio, the whole range of so called pain relieving tablets like Gabapentin etc . The new neurologist says she can find nothing wrong and it could be emotional 😡 (my reply to that is not printable here !) She only works two days a month and leaves four month between follow up appointments so we go from month to month to month
I’ve seen other people mention having had lots of testing…and still being no further forward in finding the exact cause.
🤔 Sometimes…the cause is Neuropathic Pain, and this type of pain can be very difficult to diagnosis…but if it is found to be the case it can be treated.
Have a look at this link, it is lengthy but..it’s possible it could be helpful.
Curaleaf Clinic is a licensed and regulated private clinic with specialist doctors who can prescribe medical cannabis to eligible patients with a range of conditions.
Hi there, sorry to hear your hubby is having such a horrible time.Just a long shot here but has he got a definite diagnosis of what type of ataxia he has? If it's still idiopathic (they don't know) then it's worth looking into gluten being cause of ataxia. The autoantibodies can cause pain in the muscles and joints.
Hi i have so much pain and thé only pain killer that works is tramadol they tryed many others i know maybe it very strong but i cant do anything with pain i take 2 in thé morning 15 minutes later i have no pain i avoid 2 a night and use hot water bottle if its too bad i take 2 tramadol Good luck i know people that refusé pain killer i dont i m not brave my Kids freak out about me taking tramadol but too bad they can keep there arnica 😆
I must add my neurologue asked for à body scan they have found 3 fractures in my back that explains a part of thé pain so thats another specialist and another story must have happend on one of thé many times i ve fallen
It could be something not revealed. I had letter to gp copied to me with MRI results telling of cyst on the spine and consultant was quite angry that it had been copied to me. He said i didn't need to know as it is benign and inoperable. I'm convinced it's the cause of sural nerve pain from top to bottom of my leg . Pregabalin 75mg twice a day dulls the pain. Also raised leg on recliner relieves it so I spend many hours there ! Patsy x
I find the more inoperable I am, the more pain I deal with. Recently, I have been trying to be more consistent with my workout at the gym which I feel helps hugely. For my physical and mental state. I also use pregabalin 75 mg once a day and nortriptyline 25 mg once a day.
Because my neurologue asked for thé body scan henné we have seen thé 3 osseuse fracturé i m having bloodbtests yo seebif my body can support à transfusion to strenthen my bones to hopfully stop any more fractures when i fall even though i m very careful unfortuatly it still happens Only saying but maybe à Rhumatologue could help your husband with thé pain 🙏
Hi, sorry to read this. I had exhausted a list of medications for pain. I was invited to attend a pain clinic, you learn about pain how to deal with not easy though. Part of attending the clinic I got to try Tai Chi this helped calm the mind with gentle movements, it got so repetitive so now do not attend. I could also try acupuncture for 10 sessions and honestly this worked for me, brilliant. After my legs, body felt lighter, my mood was very good, pain levels dropped considerably. Would recommend this, needles you hardly feel inserted left in for about 25 minutes, I listened to wind chimes of my phone, closed my eyes and so relaxing. It was worked out I would need it every 3 weeks after the sessions, being expensive I never followed it up. I also find music helps with pain, it helps release feel good hormones. Now for pain I am on 700mg of Gabapentin 3x a day this helps. I get very painful pain and spasms in the right Latissimus Dorsi muscle for this 8mg of Tazanadine up to 3x a day. Does make me sleepy though. Find this helps a lot plus it may not affect others the same way, only take when having the pain. I have FA and to control my pain is not always easy it’s present every day, medication only help to ease it to some extent. Acupuncture is the most effective for me.
My wife has ataxia SCA3 and has extreme pains in her back and right upper leg and after a lot of investigations no cause could be found. Recently she received in a pain clinic injections with Kenacort and in her case it helps well for 6 to 8 weeks and the effect diminishes when the weeks pass. Injections are only given in the pain clinic every 3 months. Everone’s situation is different so i don’t know if this will help for your husband. I hope the best for your husband!
Information from Copilot about the effect of injections with Kenacort in situations of extreme pain:
Kenacort, also known as triamcinolone, is a corticosteroid used to reduce inflammation and relieve pain. When injected, it can help alleviate extreme pain by reducing inflammation around the affected nerves or joints. This can provide significant pain relief, often lasting several weeks to months. However, it's important to note that while Kenacort injections can be effective, they may also come with potential side effects such as:
- Temporary increase in pain
- Infection at the injection site
- Nerve damage
- Allergic reactions
- Temporary increase in blood sugar levels
It's always best to consult with a healthcare professional to determine if this treatment is suitable for your specific condition and to discuss any potential risks.
I’d like to thank you all for your replies and advice. I have made notes and will be taking them to the consultation I have manage to secure for Friday.
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Looking for support / advise
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Newbie with SCA3
