h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Yes but it's probably that you start off slowly & then build up once the muscles are accustomed to the exercise. As far as I know, none of those are specifically for weight loss; but excellent for relaxation, toning muscles & posture.

I've got to have the Bloody Knee operated on next week, i am absolutely petrified, to the point of considering cancelling it. I am totally phobic about needles, cannot stand the thought of an epidural; which i am convinced will leave me paralysed. I can't explain in French about the demyelin stuff, can't understand if they are proposing to repair the menisce or remove it totally. The latter is a very bad idea 'cos there's a hish risk of arthritis later on *but* apparently they routinely do this for older & non sporty patients on the grounds that they don't really need to be active.

If i have a general anaesthetic, at least i am spared being awake knowing they are carving me up; i am hysterical just thinking about it. But loads of risks with that: asthma, heart condition, very dodgy liver. When i go to sleep "normally" when i wake up it's usually 'cos of agonising cramps & the only solution is get straight out of bed & walk around, i can't do this after the op. Plus i get massive coughing, often to the point of vomiting, often blood stained yuk 'cos my oesophagus is shot to hell.

I am scared stiff i am going to choke to death all on my own (there sure as hell won't be a friendly familiar face there when i come round!)and even if by some miracle i survived, everything i have read says it's pretty much essential you have a carer of some sort at home at least for a week or so; this simply isn't an option; i doubt very much Yoda is going to help me upstairs to the toilet or help change dressings.

I really can't face this on my own.

zdt

Thinking of you Terri.
Hated to leave this looking as if nobody would answer if a new person came along We have talked so I have nothing to add right now.


You are likely to get some type of arthritis anyway Terri.
It is the human condition for most. I think this surgery will help you get around better for longer, once it is over.
***********

Cheerful I am wishing you luck with the exercises and easing your hip pain, sounds like a reasonable plan.

Well, it looks like it may have happened at last. My first relapse in a year. I've been having attacks of vertigo. They're particularly bad in the morning when I've just woken up. Often they fade after an hour or two, but yesterday (Friday 17th March) the vertigo went on for most of the day. If I'm lucky, it's an ear infection or something similar, but vertigo is a known 'symptom' of MS attacks. If it is an attack, I don't mind too much. Yes, it's annoying. It hampers what I can do - I have to lean on both walls as I go downstairs. Yesterday I almost fell over when I straightened up after filling the washing machine. Having said all that, it sort of proves that the DMD I'm on is working well. DMDs, like interferon-beta, are reckoned to reduce the severity and frequency of relapses. Before I started Betaferon my relapses were getting more frequent and closer together - 3 within 6 months, the last one lasting for 9 months. Like I said, this is my first relapse in a year, so I'm not complaining - much.

Forgot to mention. When I had flu last year, my hips stopped hurting and started again as I recovered. Now I'm having this vertigo thing and my hips don't hurt so much. There's still a mild sensation there, but nothing like as bad as normal.

Is there an immunologist (or something) in the house? I'm sure the hip pain is linked to my immune system as it seems to get better when my immune system is doing something else. I saw a neurologist about a month ago for an annual check-up. He says the hip problem is *not* MS-related, but he doesn't know what it is. He found it strange that the pain went during the flu attack. Apparently, things like that often get worse during illness.

Hey everyone

Ok, so I've been very neglectful of the DMN page Is there anything that needs doing?

*

Cheerful, have you talked to 2legs about the immunology issues? I hope you have had some improvement or relief since your last posts.

*

I'm just checking in really, as DMN seems very quiet now. I'll bump up the chat thread too.

Hello Kea.

This thread title is very apt for me right now. Won't go into details.

Good to hear from you JEllen

Is 2legs an immunologist or something? There's nothing in his personal space to say what he does.

Anyhow, the vertigo cleared fairly quickly, so I'm not sure what it was. I have had one definite relapse since then - sensation in left hand was affected, but it cleared up in a few weeks. My hips are still a problem and my mobility is becoming seriously affected. The amount of time I can spend standing seems to be decreasing, as does the distance I can walk before I need to rest. Hubby says I need to see the doctor and get something done about it. I know he's right, but part of me is afraid that they won't be able to do much, even if they are able to diagnose it. Earlier this year the physio told me that not all conditions can be diagnosed, which is true but not very helpful.

Oh, well. I'm off to make an appointment with my GP.

I find doctor visits a mixed thing too, sometimes useful sometimes frustrating.

I'm not sure what 2legs is but his post graduate degree was in immunology I think (he's not a clinician though).

Well, I saw the doctor today. It really surprised me that I was able to get an appointment within 24 hours. Anyhow, despite me saying I didn't think it was rheumatoid arthritis, the doctor didn't think there was anything else it could be. It's definitely not osteo-arthritis and I'm convinced it's not muscular - the pain doesn't increase as I move my legs. So he's referred me to a rheumatologist, but he can't say how long it will take for an appointment to come through.

Mum has mild benign MS, Dad had rheumatoid arthritis. I know that gives me a genetic tendency towards auto-immune problems, but having *both* would be too much!

Oh, and we were late getting hubby to work this morning so I had to walk from his office to the surgery. In the 'old days' it would have taken me 5 minutes or less. Today it took me 10 minutes and I was desperate to stop by about halfway.

Fibromyalgia can cross both lines or be found in the same families with the diagnosis your parents have.

ME - myalgic encephalitis(sp?) written about here in the Nation also.

My family of 11 other siblings , plus runs the gamit in auto-immune diseases. They would have been a good one to study!

Rhuematologists are the best when confused with bones muscles-tendons-ligaments, 100+ types arthritis, CFS -Fibromyalgia-ME. They are not all treated the same, nor get the same results in all.

I have fibromyalgia, electrical spinal cord injury and degenerative joint disease of spine primarily. I was diagnosed in a backwards sort of order. A long road to a diagnosis finally agreed on by a professional sports doctor, nuerologists and an MS expert.

SYmptoms can be confusing to all

There is a higher incidence of MS and many other things 10- 20 years later down the road among people diagnosed with Fibromyalgia-ME- CFS. Some some were misdiagnosed. People can have unreal ( not normal reactions) non-sensical type muscle problems and fatigue with fibromyalgia same as many other things.

FM or ME can interefere with physical therapy - healing from surgery or recovery from anything physical. It can appear after a surgery or a severe accident.

I have noticed a tendancy for the medical profession to stop at one diagnosis unless the patient really pushes. Many problems coexist and it helps to have the whole story for the best results. It can be confusing with conflicting information and fluctuating symptoms.

Good Luck getting the answers you want quickly.

The only way to get answers quickly in the UK is to go private and that costs money we just don't have. So I'll have to wait, possibly for months, and that's just to get the first appointment. I know that we have guidelines about how long people should wait to see a cancer specialist, but I can't find any information on how long I'll have to wait to see a rheumatologist.

Good Luck.
Keep us posted Cheerful Dragon


I have better pain control in general but still not much help for left pelvis/hip/leg. A lot of it is the muscle probelm from Fbromyalgia but some is lower lumbar.

I am going to try an epidural for L4-5.
It is one level below a laminectomy done 8 years ago.
It seems to be only space they think they can get into.
It is not possible in my neck. Perhaps it will be used in my mid back if I tolerate it low.

It may help the chronic inflamation of the nerves, may not.
I have never been able to tolerate prednisolone or even nasal steroids so they better understand and explain that part to me first!One doctor yelled at me - Babies take streiods , I give them all the time Well months later he finally said the nasal steroid was giving me far more serious problems than it was helping although it was un heard of to him. UM EXCUSE me! You have just heard and seen for yourself now. Twinny had them and her organs starting shutting down.

My biggest pet peeve with medicine is going with the percentages.
Once somebody has checked out all the likely problems within the reasonable percentage they really need to start looking beyond the heavy side of the percentages.

I wish I'd heard of somebody having had the thermal probe that burns,melts away the protruding part of a disk. For now I wish I knew the proper name! I have seen writings and gotten one unsolicited brochure years ago which felt invasive. I forget to ask a docotor about it.

Doctors are reknowned for not being willing to try alternatives, even when the 'accepted' treatment isn't working or isn't suitable. In the UK, the only treatment for relapsing-remitting and secondary progressive MS is DMDs - basically, interferon beta or glatiramer acetate. Beta interferon isn't suitable for people with a history of depression, not sure about copaxone. Anyhow, there's an 'alternative' treatment - low dose naltrexone (LDN). Naltrexone is used in the treatment of heroin addicts, but some people are taking it in low doses for their MS. Unfortunately, the people who are taking LDN aren't being monitored and the drug's manufacturer is unwilling to pay for clinical trials for use in MS. Consequently all the information on the effectiveness of LDN is anecdotal, so a lot of doctors won't prescribe it. I can see their point and the situation is unlikely to change until somebody is prepared to put a clinical trial together. Personally, I'm quite happy on Betaferon (Betaseron in the US), but I know that some MS sufferers who can't use interferon are quite upset because their doctor/neuro won't even consider LDN.

Other than that, hope things go well with your epidural.

I saw the rheumatologist on Monday. I didn't expect to get an appointment in just 2 months! He made a diagnosis on the spot, without saying he needed to do tests or scans. He does want me to have a blood test and some X-rays, but that didn't affect him making his diagnosis.

The good news is that my hip problem isn't rheumatic, or anything else to do with the immune system. It's trochanteric bursitis - the bursae (lubricating discs) in both hips have become inflamed. This is treatable, but I don't like the treatment. I have to have an injection of cortico-steroids into each hip. The doctor did the first one there and then, and it hurt like hell. Hubby was holding my hand to reassure me during the injection. His hand was near my mouth and I needed to stuff something in my mouth to stop me screaming. I nearly bit him! The doctor said the injection might make the pain worse for a few days, which it did, but it seems to be getting better now. He also recommended ibuprofen instead of co-codamol. Co-codamol is just a pain-killer, ibuprofen is anti-inflammatory. I've been taking ibuprofen for a few days and it's made a big difference to the pain in my left hip (the untreated one). I've avoided ibuprofen in the past as I'm asthmatic, but it doesn't seem to be affecting my breathing at all. I did have heart burn yesterday, but I don't know if that was the ibuprofen or my dinner.

My second injection is in 8 weeks, after we get back from holiday. I'd have liked it to be before we went, but the doctor wants the injection to take effect first. Don't know why I have to wait that long for the injection to be effective, as it seems to be working now. Still, with any luck I'll be walking without pain by the New Year. And I'll be taking ibuprofen on holiday with me to keep the pain at bay!

Hmm. This isn't nice. The muscles in my legs (especially the "bad" left one) are wasting way at a rather alarming rate. What is bothering me most is that now i dare not lie on my left side, i wake up with massive bruises. So i try & lie on my right side, which involves padding out the left leg with cushions. So now the right side is starting to go the same way!

I can only lie on my back for a short time, or i start coughing & both legs go into spasm, so i have to get up & walk around. It's exhausting really; very difficult to find a comfy position to sleep in, so i end up putting off sleeping, so i get more & more tired...etc.

Does anyone else with this sort of problem have any bright ideas?

It's the thigh/hip that are getting bruised. It seems to have come on really rather fast, over about a month or so & it's now severely hampering me walking, which is a vicious circle, 'cos my doc has always said "walk a lot, to strengthen your spindly little legs!"...er, actually, i do; i have no choice since i don't have a car & the shops are at the bottom of the hill!

But it hurts like hell.

Anyone have experience of how quickly things go downhill into "wheelchair zone" once it gets to this stage? I would rather know, so i can start organising stuff, these things take time. I would much prefer to stay in my little house & so far i can do stairs if i'm careful; but if it's going to go downhill fast, obviously i have to plan another lifestyle/accomodation.

zdt

This my hubby's response to your query. Hubby has relapsing/remiting MS (you know where we are if you need us )


"In my experience having had relapsing remitting ms since 1997.
When I was first diagnosed, I had already spent a week in hospital, getting prodded and pricked for days I was like a pin cushion.
Both legs were like lead heavy to drag round I walked with a gait like John Wayne, the diagnosis was some 3 months later.
I couldn't sleep, was mentally tired but not able to because of the pains. This went on for some time (so don't give up yet, girl).
A little exercise walking around the house or even to your shops (but only once a day) is enough. Don't lie down at times of rest during the day if you can help it.
I don't know if we have said this before but don't have baths they will prolong and excerbate the condition. A nice mellow cool or not too hot shower will help keep body temp down. MS doesn't like heat so sat in water is one of the primitive tests for MS.

My thoughts on the bruising is that maybe something you are taking (tablets or the injections) are possibly causing thinning of your blood resulting in bruising.
Check with your doctor or even on the internet if you have names of the medication.

I don't know if you are on amitriptlyine it is good for nerve spasams gabarpentin is good for pain.
I take codliver oil as is good for the joints.

The more you worry about the condition the worse you will be.
Think yourself well, stupid thing to say but, if you force yourself another two steps each day and think 'I have got it, its not got me!'
don't give up the fight."



Mags/Aaron

Aww, thanks for the advice.

I'm not on any injections, all i am on is Atenolol (beta-blocker) Aldactone (diuretic) & ventolin (asthma) plus i have been advised to take mega doses of B Vitamins. But yes, blood is thin apparently. And BP gets very low sometimes, it's a question of balancing it all out.

I'm scared stiff of having a shower; if i fall over, there's nobody here to help out.I have a bath when i can pluck up courage or when le viking (the on/off BF!) is around, otherwise i just do strip wash stuff; doesn't bother me, i lived on boats & in Africa.

zdt

Can you not stick a chair under the shower? I know that seems like giving in a bit, but if it helps...

Aaron cannot take baths at all, the heat of the water all around his body can be draining.

You know where are you need us

Hmm; yes if i had one narrow enough to fit into the bath, plus obviously not a slippery flimsy thing; gawd, that would be even worse; stranded like a beached whale entangled in a chair!

It's the getting in & out of the bath that's now becoming a problem, it doesn't look that high, but it feels it! I'm starting to realise what all those ads for "walk in baths" are about.

Bah, i suppose it's no big deal really; just literally a pain in the ass! Other folks have worse stuff; i have a new RL friend who has AS (Ankylosing Spondylitis)which can really limit things later, but he stays positive most of the time, we do have a nice grumpy moan together sometimes, which cheers us both up! It's nice to have RL fiend who understands when you say "garrgh, it's a bad leg day!"

zdt