11 months post VM passed from doctor to doctor...

[Countrylife]

I am 11 months post VM and was originally wrongly diagnosed by more than one GP. It started with a stiff neck and then very sore muscles and then the temp and crashing headache developed over a 24 hour period. On day 2 the vomiting started and I developed a dark red rash on my legs the GP I told on the phone didn't seem worried as the rash did blanche when I touched it. I decided to take myself to A&E on day 3 when I was vomiting non stop and with a temp of 40 degrees I had never felt so unwell in my entire life.

I was diagnosed after a lumbar puncture and put on IV morphine ,anti virals and antibiotics as it took them almost a week to rule out bacterial. I was in hospital just over a week. My left knee swelled up and was very painful while I was in hospital and the doctors had to remove the fluid they did say that it was just fluid and not an infection inside the joint which was a relief. I have found the recovery very difficult. I have 2 young children and every time I am unwell I feel so guilty that I am not able to be there for them as much as I would like it be. A few weeks post VM I developed pain in a lot of my joints and was referred to a rheumatologist who said I had reactive arthritis and gave me a steroid injection in the worst joint and then a course of physio which really helped. I recently started to get pain again in my joints so I went back to her she sent me for a load of tests (MRI,ultra sounds and blood tests) and put me on a course of steroids. I went back yesterday and she said all my tests were fine so I actually don't have reactive arthritis and there was nothing more she could do for me so she is referring me to a pain specialist. I feel very confused and frustrated I was led to believe since January that I had reactive arthritis following the VM but now I don't know why I have all the symptoms I have. I am seeing an Immunologist on Monday to check my immune system and I will start physio again. I do luckily have an amazing GP who listens to me and is really trying to help me. The symptoms I have are: exhaustion,painful joints, swollen hands and feet,swollen lymph nodes, low immunity,headaches, night sweats,dizziness especially when lying down, mouth ulcers, itchy sore eyes. If anyone has experienced anything similar and has any advice I would love to hear from you I am just finding the recovery very frustrating.

The thing I have found helpful is the huge amount of vitamins my doctor put me on since I came out of hospital here is the list. Some of them are pricey but they work. It's important to have good quality vitamins I am not a doctor just a patient but if you ask about this list of vitamins in any good health food/vitamin shop they will probably advise you to get them. You don't have to get these brands they are just the ones I use.

Solgar Vitamin C Esther 1000mg (twice a day)

Biocare Vitamin B complex (Twice a day)

Solgar Magnesium (helps headches and stiff neck among other things) (1 twice a day)

Dr Udo's super high potency pro biotics (very important to repair the gut after medication like morphine and repairs the immune system) (1 twice a day)

A womans multi vitamin (I use Natures plus) (usually 1 a day)

Solgar Flax seed oil capsules (Helps repair the gut and other things) (usually 2 in the morning)

There are also 2 kinds of immune boosters which I can't remember at the moment but will post when I do.

Thanks!

Hannah x

[Vespalover]

Hannah,

I wonder what virus you actually had? I had VM 6 months ago and it stemmed from the Shingles virus (zoster varacella) that migrated into my meningies. So as well as menigitus (stiff neck, crushing head pain) I also had the shingles rash on my right torso and shoulder.

I wonder what virus you had because your joint swelling may be a symptom of that particular virus.

I too was in hospital for over a week. They also gave me antivirals and antibiotics as they can not see if the menigitus is bacterial untill they take the sample from the LP and grow it in a petri dish for 7 days. If bacterial does not grow then it is viral but they have to treat for both. I too had IV morphine which didn't really get near the pain.

I take a load of vitamins too to boost immunity and try not to over do things. I have found if I do too much either physically or am stressed, I get a headache which feels like the VM but only at a pain of #4 (1-10). I also appear swollen in my face especially around my eyes.

You sound like you have a great Doctor. Keep doing what you are doing....a great friend of mine that owned a head injuries hospital and dealt with patients that had longterm brain damage from menigitus told me that it would take at least a year to get over VM, if I was lucky enough to get over it without permanent brian damage.

Hope this helps,

Ana

[Lemie]

I have the same symptoms!! Going back 2 the doctors tomorrow.

[Tiga]

have had a look on Google for you, but you can call the meningitis hot line which is 24 hour

Freephone UK number:

0808 80 10 388*

Freephone Republic of Ireland:

1800 523 196

nurse-led helpline is available 24 hours per day, 365 days of the year

[Countrylife]

Thankyou for your comments. I had a good appointment with an immunologist today. He explained the joint pain is caused by something called arthralgia it's a bit like arthritis without the inflammation and luckily causes no damage to the joints. He also thinks I have ME and has prescribed weekly B12 injections and folic acid to help my energy levels and thinks all my symptoms are a post viral reaction to the meningitis and in time I will hopefully make a full recovery. I'm feeling much more positive it makes such a difference having a doctor explain it all to you my rheumatologist was not so helpful last week which left me worried. Now I'm just waiting for immunoglobulin test results and if they are fine it's just a case of asking it slowly and bring patient with the post VM recovery.

Good luck to you all!

[daffodil in reply to Countrylife]

Hi- I also have ME and one of the mains symptoms is arthralgia which as you have been rightly told is like arthritis but without the inflammation.You will not get nywhere with a rheumatologist unless its found you have an autoimmune type pain.

When I had Meningitis in 2008,my .ME relapsed badly and I have never really got back to pre Meningitis levels of ME

You sound as if you have a wonderful doctor - few will even admit that supplements will help,so consider yourself very fortunate to have a forward- thinking GP!I am sure that given the correct treatment and also by resting and listening to youir body you will recover.It is when we are either not given any follow up or push ourselves too much that recovery seems to stall?Take care and be kind to yourself,especially if you have ME as it is imperative you dont push through the fatigue.I was wrongly told I couldnt possibly sleep 20 out of 24 hrs and if I did my muscles would waste away.I attribute listening to my GP and forcing myself to get up and lie on setee all day insated to my 10 yrs of ME and indeed to my immune system being so compromised I got Meningitis

Take care andkeep posting..

[siobahn]

I had vm in 09, I also had the joint pain in nearly every joint. 3 yrs on and I have been feeling well ish for 4 months :).

I was diagnosed after vm with viral fatigue then chronic fatigue ( 6 months down the line) then m.e ....... I have found this third year my fatigue levels r better though I doubt il ever return to full health though remain hopeful.

I would have your vit d levels checked, mine was v low and after taking supplements the fatigue got better. Pranayama breathing has also helped me.

I wish u the v best, hang on in there, it does get better.

X x