Coming to the end of her tether

My partner suffers from Multiple Sclerosis but in answering this question please try not to focus on that, as so many do in the professional field. She had laser eye surgery (lasik) Sept 2010, complications of Optic Neuritis arose two days later. Diagnosed with Optic Neuritis Oct 2010 (second bout since diagnosed with MS 6 years ago). Had eye infection (related to lasik surgery) in Nov 2010, given antibiotic eye drops. Diagnosed with Shingles (located halfway down back on left side) Dec 2010, given Aciclovir. Suspected Flu in Jan 2011, given Tamiflu. Diagnosed with Sinusitis in Feb 2011, given Eurythromycin. Current symptoms include.. severe chronic headache at rear of head, severe chronic pain behind eyes, severe chronic facial pain (forehead, nose, cheeks), tinitus (blocked ear), weak muscles esp. down arms and legs, severe chronic neck & back pain, pain switching between left and right side of body, symptoms often worse in morning, severe loss of appetite, nausea without vomiting, coughing up phlegm, extreme photophobia, blurry vision. Has been given MRI scan (awaiting results), various doctors given various answers but has had no continuity - some think MS related, some think upper respiratory infection/MS, some just don't know. All bloods are normal, no fever present, no rash present.

My partner does not believe it to be wholly MS related, she says it feels different.. that sounded strange to me at first as some of the symptoms are undeniably MS related and she herself admits that, but she knows her body and her MS symptoms well (better than doctors do). Although I am not completely disregarding MS as possible diagnosis (been suggested it is a new development, perhaps new lesions formed), I do believe what she is saying.

[supermum_ms]

I think she could be right, she would know her body and her MS better than anyone on earth. Its not uncommon though for MSers to get really bad when they do get an infection, plus their MS ramps up too. I read a study the other day that mentioned MSers seem to cough for weeks and sometimes months, long after the infection is cleared. No definite conclusions as to why but esophageal muscle spasms are thought to be part of the problem. Its also possible that this is a new sx for her, MS related but still new to her or even a shifted or worsened sx that is now different to what she's become familiar with.

We often mention MS as being a MySterious disease, it doesn't play by the rules, thats for sure. I hope the answers come soon and she gets some relief!

Cheers........JJ

[shermay]

Hello and Welcome,

I think that you have to remember that not everything is MS related.

I too have blocked ears at the moment:/ but it has nothing to do with MS.

As JJ said this is a MySterious disease, and maybe your partner knows what is going on - and realises that it not MS related.

I would however urge your partner to go and visit the Neuro, just to check things over, and see what they have to say.

Debs

[essdipity]

Hi. It seems your partner is weakened by a long series of respiratory infections. A chronic sinus thing could explain a lot of the head and face symptoms. Maybe a CT scan would help?

Of course it is likely to be more complicated than that. As others have said, several things may be going on, especially when you consider that infections often trigger MS flares.

She IS the best judge of her body. I think going full bore on both fronts is what I'd do. Find the cause of the new things while treating the MS symptoms. Not with steroids, though.

Let us know how she does.

ess

[HVAC]

I have MS and severe sinus problems.

My sinus problems cause bad headaches which go into migraines which are both typical and atypical. The atypical effect my vision and make me go numb in a different way down my left side. I sometimes get so sick to my stomach I throw up for days. My eyes are so sensitive to light I will often where an eye patch on the left which is the worst when I get a headache. The area under my eyes hurts to the touch. I am allergic to just about everything. I also get vertigo and no one knows whether that is sinus or MS. I also have asthma.

I flush my nose out with warm saline several times a day. I take generic Musinex twice a day to thin out the mucus. I take generic zyrtec for allergies the others dry my sinuses out which makes the pain worse. I also am on migraine medicine. If I keep up the saline and musinex I do not need the migraine medicine that much.

My theory on my condition and it is only a theory is the sinus inflammation ends up especially when it gets into migraine may be setting of nerves triggering the nerve damage in my brain.

The difference between MS symptoms and sinus/migraine is with sinus/ migraine treatment the symptoms go away.

Alex

[twopack]

Here are some things that puzzle me because they seem unusual (at least to me).

LASIK procedure in 9/10 is blamed for an infection that doesn't show up until 11/10 (isn't healing from that usually pretty fast?)

Usual treatment for ON is IV steroids.  I don't know if they were used.  Certainly understand if they weren't given immediately after LASIK.

Shingles visible on left trunk in 12/10 followed by a multitude of head and neck symptom (not to mention the ^fatigue and GI and respiratory symptoms.

Your girl has certainly had enough stress to get old MS symptoms stirred up and maybe even start adding some new ones.  If she has brain stem lesions from the MS it could be the issues in her face and around her eyes are related to that.

Another possible option is that the shingles didn't confine themselves to her trunk.  Although you see shingles erupt on the skin, the herpes virus that causes it hangs out in the nerves until triggered.  The blistery rash follows the nerve pathways.  That's why it is so painful.

It isn't unheard of to have herpetic pain without the rash.  If you want "outside the box" thinking, consider that herpetic pain could be involved in triggering the cranial nerves that reach out across the face.  

It is also possible to have herpes virus in the eye.  With surgery so closely followed by a shingles outbreak, I would want to be sure an ophthalmologist had cleared this off the menu of possibilities.

The after effects of Shingles can be very hard to treat and last long after the blisters heal.  Look up post-herpetic syndrome to learn more and check my info for accuracy.  

I'm no infection expert and I'm probably way off here.  The point is, your partner knows her body and knows what's happening isn't right.  She is fortunate to have you beside her, accepting what she describes is gospel truth.  Many here long for a partner like you who is willing to help maneuver over and around health care hurdles.  Please don't stop until you find the doctor who will understand this and work on figuring out the cause and how to relieve the suffering.  Relief is long overdue, imo.

Let us know please and thank you for loving your girl so actively.
Mary

[sllowe]

Hi there,

Welcome to the forum. I'm glad you found us. Would be nice if all these docs would get together and actually start weeding in, or out a culprit.

She's definitely right to feel this is not her MS working on her. I don't know which way to direct you in regards to getting someone to look at the whole picture except for a really good MD or internist, but what I thought may help if you do find one is if you had a timeline (if she's not done one already).

You gave us some great info already, so I pulled some of that and list an example:
(you can cut and paste this into something to work off of)

~Dx'd w/MS in 2004 (taking disease modifying therapy? if so, place here)
~Lasik in Sept 2010
~Optic Neuritis Oct 2010
~Eye infection (related to lasik surgery) in Nov 2010
~Diagnosed with Shingles Dec 2010
~Diagnosed with Sinusitis in Feb 2011

Current symptoms:
~severe chronic headache at rear of head
~severe chronic pain behind eyes
~severe chronic facial pain (forehead, nose, cheeks)
~tinitus
~weak muscles especially arms and legs
~severe chronic neck & back pain (describe what pain feels like here)
~pain switches between left and right side of body, symptoms often worse in morning
~severe loss of appetite
~nausea without vomiting
~coughing up phlegm
~extreme photophobia and blurry vision

Current testing (what type of doc ordered it)
~MRI scan (brain?)

I sure hope we can help you and she out. You'll find loads of support and info here with us, thanks for joining us.
-Shell

[dannyboyee82]

Thank you all for your kind words and advice. I'll try and answer everyone in what I say but I apologise if I miss you out. Also, I'm from England so if I use language that seems strange to you then that's why! Finally, if it all gets confusing.. as it is extremely confusing, I apologise. Just ask me in your post to clear up the part you don't get. I'll be sure to tell her the 'MySterious' thing.. but I bet she's heard it all before.. it's usually the case that I'm behind with all this stuff!

I've lost count of the trips to consultants, neurologists, admissions to hospital, doctors and so on. As I mentioned in my last post, each person has a different diagnosis. Her neurologist believes it to be a flare up of her MS, prescribed her pregabalin in late Jan 2011. Shortly after she went to see doctor and was told she had sinusitis, to stop taking pregabalin and see if things clear up with antibiotics. She said they helped a little, but the severe pain is still there. She was admitted to hospital by our local doctor only a week ago. When the doctors at the hospital did their rounds (she saw two throughout the day), the first believed it to be some kind of respiratory infection and wanted to do further tests. The second that came in the evening believed it was her MS, wanted to do an MRI and wanted to put her on a three day course of steroids. We discussed it and decided against the steroids but accepted the scan. She should avoid steroids like the plague, so I'm told.

So you can see our frustration, nobody can say for sure 'this is what it is, this is how we treat it'. The time-line of things I gave in my last post are of things she has definitely, without question, had. Regarding her eye infection in Nov 2010, the Lasik procedure is less invasive.. however it still takes 6 months to fully heal. The 'danger zone' for infections is the first two weeks, but that doesn't mean to say you can't get an infection after that, only that it won't effect the outcome of the surgery as badly. What they are effectively doing is cutting a flap on your cornea with a laser, shaping the cornea beneath the flap and then placing the flap over the top to heal.

I believe that due to the stress both emotionally and physically of the Lasik procedure, she had an attack of optic neuritis (which can be treated with steroids, but they are apparently not very effective). This in turn weakened her, allowed the eye infection to set in and weaken her further so that the shingles began.. and so on, a domino effect of problems. But as for now, we just don't know what's going on. She is back on pregabalin after the advice given by her MS nurse. She had an MRI scan on Monday, the results will take a further week to come through. Before she was diagnosed with sinusitis I had said to her that the symptoms she is describing are very similar to the symptoms I had when I had sinusitis. There are many symptoms, some that go together and some that don't. For instance, if she sleeps on her left side, the next day the symptoms are on her right side.. MS would not cause this to happen. Nor would MS cause excessive phlegm. But then sinusitis would not switch to opposite sides of her body.

Mary, what you say about the shingles is what we thought it to be in the first place and 'out-of-the-box' thinking is exactly what we need. We kept going to the doctors and saying this but they shrugged it off and said that shingles cannot affect more than one nerve.. to have shingles on her back AND on her face/eye is apparently impossible. The symptoms are very similar though.. I've done a lot of research about 'post herpetic neuralgia' and such but it all boils down to the apparent fact that it cannot affect multiple nerves. The pain associated with post herpetic neuralgia would be localised to the area she had shingles. She has an appointment with an ophthalmologist coming up in March as a follow up to her optic neuritis bout last year so her eyes will be properly checked out then.

The MRI will show us more hopefully, it will also show any sinus infection. I believe it to be a mixture of different things, but some doctors just can't see past the MS.. it's almost as though she has a neon sign above her head saying 'I have MS... my symptoms can't possibly be anything but MS'. Even her neurologist looked at her in a very patronising way and just said it is you MS. This is a dangerous way to treat people.

Again, thanks for your replies.. you have been great. Sorry for going on about it, but it feels good to get it out and get something back.

Danny

[dannyboyee82]

~Dx'd w/MS 2004
~Various MS episodes mainly linked with muscular-skeletal symptoms 2004-2010  
~Lasik Sept 2010
~Optic Neuritis Oct 2010 (no treatment other than painkillers)
~Eye infection Nov 2010 (related to lasik surgery, given antibiootics)  
~Diagnosed with Shingles Dec 2010 (given Aciclovir)
~Suspected Flu Jan 2011 (given Tamiflu)
~Diagnosed with Sinusitis in Feb 2011 (given Eurithromycin)

Current symptoms:
~severe chronic headache at rear of head
~severe chronic pain behind eyes (pain = burning)
~severe chronic facial pain (forehead, nose, cheeks) (pain = burning)
~tinitus (dampened hearing)
~weak muscles especially arms and legs
~severe chronic neck & back pain (pain = burning)
~pain switches between left and right side of body, symptoms often worse in morning
~severe loss of appetite
~nausea without vomiting
~coughing up phlegm
~extreme photophobia and blurry vision
~crying makes some symptoms worse
~sleeping on one side will effect opposite side following day
~severe depression

Current testing  
~MRI scan (brain & spinal cord) - ordered by doctor at hospital (awaiting results)

Current medication
~Tramadol
~Pregabalin

Upcoming appointments
~Disease modifying clinic - March 2011
~MS Nurse - Feb 2011
~Ophthalmologist - March 2011

[Sumanadevii]

When I was a young woman I had many of the symptoms your partner is describing.  I had so many sinus infections, we lost count.  Finally I seemed to stay with the worse headaches of my life with pain behind my eyes. my neck and back spasming, coughing up phlegm, no appetite, and constant nausea.  A good ears, nose and throat man finally dxed that it was an infection that had never been under control.  He put me on antibiotics for about three months.  Like magic, it disappeared.  

Whatever it is, continue the battle.  It is worth it.

[dannyboyee82]

Sounds like we need your 'ears, throat and nose man'!

Quick update: currently looking at 'Trigeminal Neuralgia', how it is linked with sinusitis, how sinusitis is linked with MS, how MS is linked with infections (particularly upper respiratory infections). It all seems to be along the same lines as my partners symptoms, at least to my un-medically trained mind. Lots of morbid stuff about brain infections and so on. Her results from the MRI scan are crucial for a true diagnosis I feel.

She keeps saying 'I wish it was my MS, I know it would go away if it was'. I'm hoping for something, I don't know what.. but she needs to know.

Anyway, my eyes are beginning to go funny.. you know, when you have been at the computer most of the day and you look around you and suddenly everything seems somehow smaller and further away than it is? Or perhaps bigger and closer than it is.. I can't decide! No? Must just be me then! Time for bed I think.

[rendean]

HI and welcome!

I thought I'd throw my two cents in the mix by telling you that an MRI is not the test of choice for sinusitis. It often portrays the sinuses as more infected than they are, here is an excerpt with references:


Note: MRI is not as effective as CT in defining the anatomy of the sinuses and therefore is not typically used for suspected acute sinusitis.
Alternative Names

MRI of the sinuses; Magnetic resonance imaging - sinuses; Maxillary sinus MRI; Cavernous sinus MRI
References

Wilkinson ID, Paley MNJ. Magnetic resonance imaging: basic principles. In: Grainger RC, Allison D, Adam, Dixon AK, eds. Diagnostic Radiology: A Textbook of Medical Imaging. 5th ed. New York, NY: Churchill Livingstone; 2008:chap 5.

O’Handley JG, Tobin E, Tagge B. Otorhinolaryngology. In: Rakel RE. Textbook of Family Medicine. 7th ed. Philadelphia, Pa:Saunders Elsevier; 2007:chap 25.

Rosenfeld RM, Andes D, Bhattacharyya N, Cheung D, Eisenberg S, Ganiats TG, et al. Clinical practice guideline: adult sinusitis. Otolaryngol Head Neck Surg. 2007;137:S1-S31.

Hulett KJ, Stankiewicz JA. Primary sinus surgery. In: Cummings CW, Flint PW, Haughey BH, et al. Otolaryngology:Head and Neck Surgery. 4th ed. Philadelphia, Pa: Mosby Elsevier;2005:chap 53.
Update Date: 3/18/2009

Updated by: Benjamin Taragin M.D., Department of Radiology, Montefiore Medical Center Bronx, N.Y. Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.


I just wanted to add this piece of information to the mix so that the problems are not all blamed on sinuses because an MRI shows inflammation.

Sending wishes for luck in defining the problem,
Ren

[Lulu54]

Hi and welcome,. You have some solid answers here, so I won't reepeat those.  What I do want to ask about is the desire to avoid steroids.

Yes, they can have some nasty side effects, especially after prolonged usage, but they are very effective in giving relief to MS symptoms by reducing inflammation. they can cause weight gain, insomnia, bone thinning, etc. but most of that comes from prolonged usage.  What they use for MS is often just a 3 day course.  I hope you and your partner will reconsider the opposition to IV steroids and discuss the pros and cons with the doctors.

good luck,
Lulu

[essdipity]

But Lu, there's a big probability here that she has an entrenched infection, maybe several. Not a good time for steroids,

ess

[rendean]

Good point Ess!!

[dannyboyee82]

Until we know for sure what is causing this steroids are not an option. The other reason for us choosing not to use steroids was that the doctor who was prescribing it was not A) a neurologist or somebody experienced with MS and B) he was not her usual doctor and did not know her full history. If her neurologist had recommended the steroid treatment it would have been different. He has said to her in the past that you should only use steroids in extreme circumstances, for example.. if her optic neuritis affected both eyes, she could no longer walk. Although, right now things are extreme.. but it is because it has been going on for so long. The pain is gradually wearing her down.  

Well, today I was out at work and when I arrived home she seemed in good spirits. We had a laugh about a few things that happened at work and one of her friends had left a gift for her on the doorstep with a card. Her friend lives in London and doesn't get much opportunity to see my partner, but with the way she is she doesn't feel up to seeing her. Maybe tomorrow.

Unfortunately, now she is back to being in extreme pain. Any slight sound or movement seems to trigger it off. It must be so, so hard to deal with. I feel helpless.

[rendean]

Dear dannyboy,

Your partner is a very lucky person to have found someone so willing and understanding. Your empathize  is to be applauded! I am so sorry your partner is feeling so poorly. Sending wishes for a quick recovery.

I also like the informed thinking you put into your decision making. Thanks for clearing up our speculations regarding the steroids!

Ren

[essdipity]

It is tough when the patient is the one with medical knowledge. When I had my ankle surgery I was in the hospital longer than expected, but decided to go home (myself) because I didn't have my Avonex and it was past the time for it. Part of the reason I hadn't brought it was that it is supposed to be refrigerated, and who knows whether they would have taken care of it. They even lost another of my prescriptions.

I explained what Avonex is for, and that it is an interferon. Several people chirped up with, 'Oh, we have interferons. We can give you that.' I would have run screaming, if I had been able to run, or even walk. Lord save us. So I went home, where I understand my meds better than they do.

Danny, you were right to turn down steroids.

ess

[Lulu54]

that all makes sense to me.........  especially that it wasn't her neuro recommending their use.  

I hope the pain stops soon and her health makes an upward turn.

Lu

[Sumanadevii]

I don't blame you for turning down the steroids if it was not recommend by her regular neuro.  I do know that my neuro wouldn't allow me to take steroids if she thought I had any kind of infection...so I am not understanding another that would allow it.  It's too bad she can't take a round considering the pain she is in.  It might be from inflammation and the steroids do help with it.

[dannyboyee82]

My first comment in a few days, have been busy at work and home so haven't had an opportunity to drop by. In preparation for tomorrow I have compiled a complete list of symptoms and other bits of information. She goes to see her MS Nurse and doctor tomorrow. For what it's worth I'll post it here for you guys to look at, maybe you have experienced similar things and could shed some light. Hope everyone is doing well.

ONGOING HEALTH ISSUES

~ Multiple Sclerosis
~ Endometriosis
~ Asthma


TIMELINE SINCE RECENT HEALTH ISSUES BEGAN

~ Lasik Surgery Sept 2010
~ Diagnosed with Optic Neuritis Oct 2010 (given Tramadol)
~ Diagnosed with eye infection Nov 2010 (given antibiotics (name?) eye drops)
~ Diagnosed with Shingles Dec 2010 (given Aciclovir)
THIS IS POINT WHEN CURRENT SYMPTOMS START
~ Diagnosed with Flu Jan 2011 (given Tamiflu)(had Flu jab Dec 2010)
~ Diagnosed with Sinusitis in Feb 2011 (given Eurithromycin)
~ Diagnosed with urinary infection March 2011 (given Trimethoprim)


CURRENT SYMPTOMS

~ Severe chronic headache (switching areas)
~ Severe chronic pain behind eyes (pain = burning)
~ Severe chronic facial pain (forehead, nose, cheeks, jawline) (pain = burning)
~ Severe chronic neck, shoulders, arms & back pain (pain = ache, sensitive to touch)
~ Severe chronic earache, drumbeat in ear (tinnitus?)
~ Severe chronic tooth pain
~ Pain/symptoms switch between left and right side of body rapidly
~ Weak muscles especially legs (MS related?)
~ Worse than normal pins and needles in hands (goes away when arms at side)
~ White discharge from eye (occasional)
~ Eyes feel dry
~ Difficulty focusing
~ Severe loss of appetite
~ Severe weight loss (1 ½ Stone in 2 months)
~ Nausea without vomiting
~ Constipated
~ Diarrhoea (liquid)
~ Dehydrated
~ Shallow breathing
~ Chest pain
~ Pain when breathing
~ Coughing up phlegm
~ Phlegm running down throat
~ Sore throat
~ Dry throat
~ Nose constantly runny/blocked
~ Difficulty swallowing
~ Hot & cold sweats
~ Extreme photophobia and blurry vision
~ Phonophobia
~ Dizziness, blacking out upon standing
~ Unusual fluid during recent peroid
~ Pain when passing urine
~ Difficulty passing urine (MS related?)
~ Constant tiredness
~ Mood swings
~ Severe depression
~ Anxious, nervous
~ Irritable
~ Nightmares
~ Memory loss
~ Dazed feeling


THINGS THAT AFFECT SYMPTOMS

~ Often worse in morning
~ Sleeping on particular side will affect opposite side following day
~ Stress/crying makes symptoms worse
~ Sitting up in bed eases symptoms
~ Breathing fresh air eases symptoms
~ Wind/cold air makes symptoms worse
~ Heat soothes symptoms


CURRENT TESTING

~ MRI scan (brain & spinal cord) - ordered by doctor at hospital (awaiting results)

CURRENT MEDICATION

~ Tramadol (x6 50mg a day)
~ Pregabalin (x2 25mg a day)
~ Trimethoprim (x2 200mg a day)(3 day course)

UPCOMING APPOINTMENTS

~ MS Nurse – Early March 2011
~ Ophthalmologist – Mid March 2011
~ Disease Modifying Clinic – Early April 2011

[sllowe]

Danny!

Excellent, excellent job with this timeline, Danny!

What I anticipate is that the doctor you are seeing will be able to attibute what you have on this list to those things he or she is versed in.

What you may find helpful at the onset of the appointment is to mention that you've completed this timeline so a doctor can scan through it and zero in on the "whole" picture of what is going wrong.

Also mention what you did here to us that most doctors attribute this always to her MS. And, stress what you said about this being dangerous practice because we all know there is no "fix" to MS.  I do not believe by any means that all of this is her MS.

Look this doctor straight in the eye and ask "Are you willing to look at the whole picture and start an investigation on at least one of the biggest problems?" And, then name that problem. If doctor says it's out of his/her league - ask for a referral to someone who does this for patients.

You can also (before you go to appt.) help her to zero in on one of the largest problems (that leads to the smaller ones) so if this doc is willing to take on the investigation, you've got a game plan - kind of a priority list of sorts.

Wishing you both all the best of appointments tomorrow. Know we're pulling for you.
-Shell

[kelly97]

First of all, thanks for being such a caring partner.

I've read through everyone's posts, including yours.  I was wondering if there has been any testing for neuro-sarcoidosis or has anyone suggested it?  

I've read on avg it takes about 7 yrs to be diagnosed with it once the symptoms start. The reason why I thought of it is that it is one of the MS mimics.  It carries a lot of the same symptoms as MS. However, the symptoms that you listed like facial issues, eye problems, sweats, sinus issues, loss of appetite & weight loss, psychological issues, muscle weakness on both sides, and issues with breathing all are symptoms that typically present with neuro-sarcoidosis.  

I hope they can figure all of this out quickly for her.
Good luck to both of you.
-Kelly

[Lulu54]

The neurosarc is an excellent thought - good catch, Kelly.

how did the appointment go today?  Give us an update when you can gather your thoughts.

Lu

[dannyboyee82]

Hi guys..

Well, first of all thank you all for your concern. I really appreciate it. She still has no report back from the MRI.. the doctor dealing with it has been off sick the past week so who knows when we'll find out. Secondly, her trip to the doctors yielded yet another theory on things.. Anxiety, psychosomatic disorder. She was given Prozac.

Perhaps there is some truth to it, I just don't know what to think any more and nor does she. She has certainly deteriorated psychologically over the last few months, but with everything going on who can blame her? It is yet again another example of a doctor unwilling to open his mind and instead just throw drugs (the fashoinable one seems to be anti-depressants) at the problem. Slowly but surely she's losing her faith in the medical service here.

I suppose, as Shell predicted, one thing he did do was investigate her eating/weight-loss/bowel issues. She has been referred to a Gastroenterologist. He also gave her some laxatives, which have worked quite well in getting her bowels moving again. I suppose he sees this as a particularly high level of threat to her health and it is something he can clearly see by examination.

He admitted that with all the symptoms, it just cannot be her MS.. at least not entirely. He also admitted that he simply didn't know what it could be, he said that it is extremely unlikely that all those symtoms (symptoms) could be caused by one single thing.

She has begun to reduce her Tramodol intake, which has made her bladder issues easier to deal with. But on the whole, nothing has really changed. She needs proper care, an open mind and a doctor qualified to deal with her. Sadly, we have yet to find this.

[Lulu54]

Is it possible for her to get a referral for a psych eval so that doubt can be erased?  We talk about it quite often here, but I'm not sure how it works on the NHS.  

Yes, there is a real mental side to living with a life long chronic disease.  You are a wise man to recognize that it would affect anyone this way.  Throwing prozac at the problem does nothing to help - I hope she sticks with looking for answers.

I'm glad she has the GI doctor referral- that is really important to be treated.

take care, L.  

[shermay]

The NHS is famous for it's post code treatment.

Giving a prescription for Prozac is not the answer really, you have real issues going on here.

IMO, I would seek out another Neuro, and if possible, to go privately, and not go through the NHS system.

This is what I did many years ago, and you would be amazed at the different approach to a patient - they LISTEN and not just try and mask the problem, they see a cheque book there and they bend over backwards to help - believe me I know.

At least your partner has meds to treat her bowel issues - which many of us have had from time to time.

Fingers crossed,

Debs

[sllowe]

Danny,

I was so hoping for a bit more from the doc - I'm just as anxious as the next where good care is concerned. But, referred to the gasto, agrees not all MS, and then the additionally the psychosom. Any referral for that? Or, just the script?

Was a follow-up scheduled? Did you get the feel of a blow-off? I hope not. Shermya (Debs) knows her way around the system, hope you can work your way through w/that advise...

-Shell

[dannyboyee82]

Hey all,

A follow up was scheduled for two weeks time. I'm just so angry at the level of care we have (or don't have) here in the UK. Things are about to get a whole lot worse with the new Conservative government, but that's an entirely different thread there.

Debs, it is something we have considered quite recently, going private that is. If we could afford the costs we would be there in a heartbeat. The fact is that the NHS is our only option realistically. It means going back and forth to doctors, putting pressure on them and finding the right one to deal with the situation properly. The doctor we saw is usually really good, but unfortunately with the way things work here they are only good at treating obvious illnesses or minor issues.

Perhaps a referral to a new neurologist is the way to go. But my partner has no fight left in her. As my thread title suggests, when I wrote my first post she was coming to the end of her tether. Things are now much worse. I try to inspire her every day, I do whatever I can but she is just as  stubborn as her illness. I'm trying my best to juggle work and caring for her whilst keeping strong and a level head, but today there is a dark cloud following me.. I feel like I could break down at any minute and the thought of going to work and acting like everything is OK is just awful.

Truly, I appreciate the time you spend to keep in contact with me. Right now, you are my only line out to the real world and a genuine support. Thank you.

[shermay]

Hi Danny,

Just read your post several times, and I can honestly appreciate your financial situation. The Conservatives are really messing with things - and affecting the people with the least money! and imo that is just downright cruel !!!

Having said that, to go and see a neuro privately will cost you approx £100 - I have just spoken with my own Consultant, and this is what he charges.

I also mentioned about a 'friend' - no names mentioned btw or website - that was having serious problems and he said that it would be money well spent as the Neuro would point them in the right direction.  For example - another MRI, a certain Dr etc., but at least you would have a direction in which to follow.

So basically what he was saying, pay to go privately for the initial consultation, and THEN let the NHS take over - with the advice of a Neuro.

As for the other point about your own Dr, are you talking about the Neuro or just a GP??

My Husband too has a dark cloud following, but he keeps a lot to himself, and does not let me see what is going on in his head - yes he does have times when he breaks down, I have not really seen him when this happens as I have been in bed, (but I have heard him crying) but he drags me around like a rag doll, and will not let it get to me, and he knows that when I go into depression - it's bad.

I know when he is mad at my MS, because he swears at me, and grabs hold of my arm, lifts me down from the 4x4, and shouts at me 'COME ON GET THOSE LEGS TO WORK' and I know what he trying to do.

If this is my Husbands way of dealing with MS - that's fine with me.

You have to do your best to be strong I know it's hard cariad, but coming here is a great place to start, we are one big family here as you can see from the other posts.

A good friend said to many years when I was dx to put your best foot forward everyday.

Sending hugs from a Welsh Girl, be strong cariad,

Debs X

[crwriter]

The psychological effects of this disease can be devastating.  I went years with doctors telling me nothing was wrong.  I so wanted to believe them.  But as I research MS, I see test results that I know were absolutely ignored in lieu of the easy diagnosis.  I became resigned to dying last year when I was being practically thrown out of emergency rooms.  The only thing that kept me going was my son.  He will be 34 in April.

I am hoping to put things in place to become more mobil, but I certainly fear some of the treatments.  They can impact other things.  And I am afraid.

I can face things now, but perhaps I won't be able to later.  I am so glad I found this site.  Although I am familiar with the Human psyche, I know very little about medical.  I told the MRI tech last week that this is like dying a squareinch at a time.  I'm afraid of becoming a prisoner in my bed with a working mind.  Actually, that terrifies me.  No one is going to do for me l like what has been done for Hawkings.

Fear, for me, is an important aspect.  You seem like you are becoming frustrated and that is okay. Calm is difficult.  I see so many heads of calm here.  Bless you all.  And, although I am not religious, Bless you, Danny, for caring.

[dannyboyee82]

Hi all,

It is sound advice you give there Debs, and thank you so much.. although I welled up when I read your post it helped a great deal. I wasn't aware that you could do that.. I mean, pay to see a consultant neurologist and then go back to the NHS. Well, I've suggested it already and the plan is to see how the MRI results turn out first. It was her GP I was referring to earlier Debs. Without doing any serious examinations, or taking the time to listen to my partner and I, or even properly reading the time-line I printed off that I have pasted in to one of my earlier posts, he just put it down to anxiety and gave her anti-depressants. I think between now and her MRI results we are going to try one last GP, the head of our practice here. This time I am not going to leave until I am satisfied with what he does and says. I want real examination, real diagnosis, real tests.. not a textbook medical school brush-off so he can fit in his next patient.

I can relate in every way to your husbands frustration, I feel very much the same. Although MS affects people in a multitude of different ways, I think psychologically it is always the same. Much of what yourself and crwriter have offered up today is identical to the feelings my partner has. She is at the moment confined to her bed, and has been since Christmas when all this really began. She has an extremely sharp and intelligent mind and so I can relate to your fears crwriter, above all else that is what she finds the hardest.. especially at the age of 27. We have had arguments about the so-called 'Dr Death'.. a road I hopefully will never have to travel. With no family and only myself and a sister in London, we are the only things keeping her going.

Shell, I feel that the GP who suggested the anxiety as a major factor here was blowing us off really. I mean, of course she is going to feel anxious, depressed, frightened and so on. Anybody in the same situation would be. It isn't the answer to her problems. The problems were there a long time before she became severely depressed and anxious, it is partly to do with the lack of care from our health service that she is the way she is psychologically.

Well, tomorrow is a new day. She is eating better now, still nowhere near the amount she usually eats.. but she is getting there. Her bowels are moving again and the urinary infection has been taken care of. So in that respect she is improving. I'm not working tomorrow so I plan on taking her out for a short drive somewhere nice if she is up to it. She is quickly running out of audiobooks! We must have spent hundreds of pounds on audiobooks and prescriptions these last two months!

Danny

[crwriter]

Ironically - I have followed brain research for decades.  My conclusion (and this is only my conclusion - doesn't mean spit) is that we do not do enough of it.  We have far more powerful equipment that is really expensive to run which we do not use.  PET scan is one.  There is an MRI machine under development which should replace the PET scan.  Don't know much about it, but it made me jump for joy.  Attitudes very well could change in the coming decades.  Change is constant.  Let's hope these changes will prompt movement in the direction of cures for our trials.  She's 27?  I am sorry for her trials at such a young age, but her very youth gives time for change to occur.  I am 58 - I was in the technical field in the dawning of digital.  We have made fantastical strides in technology during these past decades.  I see me trudging through my remaining years with the possibility that I will not see enough changes to help me.  But I believe technological advances may depend on understanding the human brain and nerve impulses.  It may not swing things our way, but it could...  

Brain research appears to be fad oriented with studies of certain aspects driven by the search for grants.  Again - this could be a misperception on my part.  But even if this is true, it gives rise to hope.

[Sparkysarah]

I have come in on this post rather late as I have been away, but just wanted to say a belated welcome from a fellow in the UK. I live in Gloucestershire so where are you from? I am deeply touched with the love, compassion and understanding that you have and continue to show for your wife and she sounds like she found a good'un!!!

iWonder when the MRI scan results come in..let us know but you may want to start a new post?  We are here to support  you so feel free to have a moan and a vent..it must be very tough for you coping emotionally with everything.

Best wishes

Sarah

[dannyboyee82]

Yes, research is something that needs to be done.. and a lot more of it. Here in the UK J.K. Rowling, the author of the Harry Potter series donated £10m for a new research centre at Edinburgh University. Her mother died of MS aged 45 and like many of us she was frustrated by the lack of research. It is named after her mother and you can read about it here.. http://www.euanmacdonaldcentre.com/anne_rowling.html

I tell my partner that time is on your side, a cure may well be discovered in ten or twenty years. But, it's often something quite hard to swallow.. she feels she can't cling on to something like that because it may never come around. I fully understand her reasons. I hope for all people who suffer from neurological illnesses see more research and more effort and one day, hopefully a cure. Stem cell research looks extremely promising.

Sarah, thanks for dropping in on my thread.. and your kind words. I do only what comes naturally to me, the love for my partner knows no bounds (cliche, I know, but it fits) and I would do anything for her. We live in Yorkshire Sarah, almost as picturesque as Gloucestershire! I love your part of the country.

Hope all is well, keep your fingers crossed that the MRI results come in soon and yield some information.

Danny

[crwriter]

I know one consideration on my part is the burden I am to my son.  I keep my humor alive.  He comes home and calls me from downstairs and I exclaim, "Feeding time?!"  He loves me and I love him.  But when Dr. Death ripples through my mind, it is most often because I do not want to ruin his life.  I am not as bad as your partner.  And I have some years on me.  I do not want what little I have acquired to be eaten up by what is happening to me now.  I do not want his hope for a better future than mine to be squashed.  You've given me pause to think.  I hope I have done the same for you.  

Lulu suggested Dragon Naturallyspeaking to me.  My best friend of thirty years pounces on me to write five to ten minutes a day.  Perhaps journaling can be an outlet for her and help her explore those emotions flipping through her mind.  Life constantly throws us curveballs.  It's what we do with them that makes us remarkable.

Thank you for sharing.  Your sharing has helped me.