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Imbalance walking & weakness arm/leg

Posted , 5 users are following.

Gilhawlf
Gilhawlf

Hi, i hope someone may be able to help.

Shingles 10 months ago, C4 right jaw down neck around in ear. Took 5 days antiviral, following week flu chest infection where i took antibiotics. Then few fainting episodes. Ever since..... my life has been forever changed.

My balance walking is terrible. I feel weak right side head and arm leg, and like I'm falling to left. Some days i need to hold onto someone.

Some days my right arm shake or twitches. My right arm and leg can feel weak dead sometimes.

And pain fullness in right ear going down to tonsil.

Fast forward I've had MRI MRA CTA CT of head. They found tiny anyeurism right ICA but its too small low risk to do anyth but monitor.... its possible was caused by shingles. I've seen neurologist and neurosurgeon.

I do daily vestibular exercises. Its only mildly improving.

Am i just pure mad... or has anyone ever had anyth similar?

I'm hoping to go to ENT ear nose throat specialist... will they help at all?!!

Will i ever get back to normal life walking working driving etc?

Thanks so much

Any advice at all v appreciated

Fiona

0 likes, 14 replies

14 Replies

  • babs99203
    babs99203 Gilhawlf

    Posted

    My first thought is are you on gabapentin or similar pain medication? Neurontin/gab can cause imbalance issues and jerkiness. I'm sorry you're going through this. An ENT may help if you have an undected vestibular problem. You may have several issues going on, including an ear infection, Meniere's or other balance issue. But all the symptoms you mention can occur with gab.

    • Gilhawlf
      Gilhawlf babs99203

      Posted

      Thanks so much for the reply. No I'm not on any medication other than daily antihistamines for allergies.

      Prior to shingles i was healthy 35yr looking forward to life.

      Now all i want is to be healthy again.

      I'm back with my neurologist this week. I'm starting to get scared of other horrible diseases. I'm sure I'm worrying too much tho.

      Have u heard or know anyone with shingles in ear? And long term impacts.

    • babs99203
      babs99203 Gilhawlf

      Posted

      Yes, shingles can impact the ear. I don't want to play Dr. Google hear, but Ramsay Hunt Syndrome can occur after shingles in the nerves around the face and ear.Your have many of the symptoms. The May Clinic website had information. Merry is a very active participant in the forums and is very familiar with it. Obviously this may not be your issue at all, but I would think a neurologist or ENT would consider that. Your problems can be caused by numerous conditions so unfortunately, you need a very good diagnostician to help you with this. You could consider going to a larger facility such as a teaching hospital.

  • joseph_73900
    joseph_73900 Gilhawlf

    Posted

    Very sorry to read what you are going through, balance I can understand. I am being treated for CLL and have got a double dose of shingles. Like you I walk about 8 to 10 klms a day, I get upset if I miss my walk,but some days my balance is completely off and it is embarrassing when it happens. Now after six months it does not happens as frequently, so hopefully it will get like that for you.

    • Gilhawlf
      Gilhawlf joseph_73900

      Posted

      Thank u for the reply and inspiring story. Best of luck also with your treatment for CLL.

      I think my problem is that I stopped walking anywhere for a few months because ears were bad.

      In retrospect my vestibular physiotherapist says to continue trying to exercise.... to help the ears and brain learn balance again.

      I definitely think i may have some long term ear damage from shingles. Hoping ENT will help next.

  • Merry19451
    Merry19451 Gilhawlf

    Posted

    Dear Fiona

    I have had Herpes Zoster Shingles every 3-5 week for the past 22 years in my right ear, with ataxia, ie vestibular ... balance issues. (Ramsay Hunt Syndrome)

    The right leg and arm loss of sensation is either caused by a neurological or cardiovascular dysfunction, but not specifically by

    Ramsay Hunt. Where exactly is the loss of sensation? Have you lost any movement or strength in your arm, leg, or hand, fingers?

    Did they amplify the area around the inner ear in the CT scan and cerebellum, both areas concerned with balance.

    You need to see a neurotologist or otoneurologist, an ENT/neurologist , usually in a university setting.

    The fainting spells are not from shingles. You need to see a cardiologist, as the fainting could be due to arrhythmias of the heart

    I also have had two strokes, and part of my balance issues are due to a dehiscence (rupture) of my semicircular canal in my right ear due to Herpes Zoster, and lesion in

    my cerebellum due to a stroke.

    The MRIs MRA CTs CTA all

    need to be done with strong new machines, or it doesn't pick up fine details.

    Hopefully, you were seen by excellent physicians

    in a University Medical Center.

    I will send this, and return in a few minutes.

    Best Regards,

    Merry Juliana

    • Gilhawlf
      Gilhawlf Merry19451

      Posted

      Hi Merry, thank u for reply. Wow it sounds like your shingles road has been long and difficult. Im sorry you've gone thru this.

      All my scans have been on newest 3T mri machines v high def. And yes i had the special mri of the ear canals with contrast done (IAMS i think is name). All were clear thank goodness.

      For me the balance issues come and go, some days ok some terrible. It's as if my right ear flares up, gets inflammed, and then its tough walking on my right side.

      I hoping ENT may be able to help. I have heard you can get steroid injections or antibiotics directly into ear which supposedly helps. I have also heard of people taking Serc medication long term to help regulate ear pressure.

      I sympathise hugely with your ataxia difficulties. Having lack balance is such a huge issue. Impacts whole life.

  • Merry19451
    Merry19451 Gilhawlf

    Posted

    Dear Fiona,

    With shingles, while it can certainly involve more than one dermatome, other symptoms are not shingles of the C4 dermatome.

    The fainting is again more cardovascular or neurological. The loss of sensation in your arm and leg on and off makes me think of TIA transient ischemic attack or mini stroke. Your cerebellum could be involved, and if

    the images were not done by a sophisticated ie newer machine, it might not pick up a smaller lesion.

    Did the neurologist do a thorough neurology exam?

    I am a Nurse Practitioner in the States.

    Best Regards,

    Merry Juliana

    • Gilhawlf
      Gilhawlf Merry19451

      Posted

      Thsnks Merry. Yes I had full work up with neurologist in Dec, then two meetings with neurosurgeons in Jan and then this week. I'm back with neurologist next week where i will ensure full review again. And ask for ENT referral too.

      Do u have any suggestions for further tests?

      In regards weakness arm leg, it again comes and goes. A bit like dead arm feeling. Im unsure if it could be muscular as i have neck issues too.

      I too have considered TIA given my symptoms but all specialists who have reviewed my scans seem to think no evidence.

    • Merry19451
      Merry19451 Gilhawlf

      Posted

      Fiona,

      If we reach a certain age, we all have problems with our neck and back. I am not marginalizing your leg and arm, but trying to give different reasons.

      The other issue to consider is, are you having flares? What's causing the flares? Could you possibly have an autoimmune disease such as rheumatoid arthritis, systemic lupus erythematosis, that would be episodic in nature? A rheumatologist would be a specialist to see regarding those issues.

      Best Regards

      Merry Juliana

    • babs99203
      babs99203 Gilhawlf

      Posted

      It may be you have multiple problems, most of us do, but not all impact our lives. Have you seen an orthopedic doctor? A CT/MRI of the head is not the same as having the neck/cervical spine area evaluated. If there's an issue with the spine, that can cause periodic problems. You say you have neck issues, so I'd assume you have had xrays and other diagnostic imaging of the area.

    • Gilhawlf
      Gilhawlf babs99203

      Posted

      Hi, yes i have had a full MRI of spine too. Neurosurgeon had suspected tethered cord. But report was all clear.

      It may likely be the most obvious reasons, shingles caused imbalance in ear, and my neck issues causing arm weakness and little bit leg.

      I do hope so. I'm obviously terrifying myself thinking of other worse case scenarios like ALS or something..... Im hoping though that all my neuro doctors would have picked that up.

    • babs99203
      babs99203 Gilhawlf

      Posted

      That unknown is so scary, isn't it. Let's go with your thoughts in that second paragraph, OK? I'd like to give you a quote from the actor and activist Michael J. Fox. I've always been very pragmatic, even a bit of a pessimist, but I've had to change that because of this illness. That negativity was hurting me. Here's what he said. "That's the way I look at things - if you focus on the worst case scenario and it happens, you've lived it twice. It sounds like Pollyanna-ish tripe but I'm telling you - it works for me."

  • Merry19451
    Merry19451 Gilhawlf

    Posted

    Dear Fiona,

    As you have neck issues, it certainly could cause decrease sensation in your arms. If you have back issues, it could cause decrease sensation in your legs. Either discs or stenosis of the spine can cause decrease sensation.

    An ENT certainly may may able to help you you. I am so sorry you are having a difficult time. May I ask your age?

    Best Regards

    Merry Juliana

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